CSF Leak Diagnosis UPDATE // My Neurosurgeon Dropped an F-Bomb.

FIRST: watch the "Am I Misdiagnosed?!" Video ( • Am I MISDIAGNOSED?! //... )
I finally went to the neurosurgeon that I was talking about in the video above. This UPDATE is to let you know how that appointment went! Chronic illness is such a roller coaster.
Cerebrospinal Fluid Leaks get misdiagnosed frequently. Two weeks ago, I told you the CSF leak and intracranial hypotension symptoms I've experienced, the at-home tests for a CSF leak that I've done, and what my next steps were for diagnosing a CSF leak. This video is simply an update!
I've been potentially experiencing the symptoms of a cerebrospinal fluid (CSF) leak for years, but have never been through tests for a cerebrospinal fluid leak. Maybe someday I'll get to do a video about how I treated or cured my cerebrospinal fluid leak! wink
My glucometer: amzn.to/3aU7Ir7
Let me know if you have any experience with this, because I really want to learn as much as I can to potentially get to the bottom of my migraines, positional headaches, and all the other fun stuff!
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[@MommingwithMigraine]

Yaaaaaay update time!!! A bad step forward is still a step forward!!

[@hypnotherapy69]

I don't have a csf leak but I have Hydrosephalus nd I walked aroud with a fluid leak for years , the metalic taste, migrain and comfusion. it took me getting a head injury for them to investigate I got menhingitis and was hours from dying. I really hope you find answers soon and I do belive you have a csf leak (after all my reading+ my own experiance . Sadly women NEVER get treated seriously about their medical concerns keep but fighting and you will get there!

[@wanda9740]

I'm happy for the update! I am. But that woman?! "I am a brain surgeon." Me: "And?" 👀 Seriously? 😡 That Crazy dang heifer! (I am not going to cuss on your channel. But in my head, I. AM. FURIOUS. and cussing)

[@angelland4962]

Sending you confidence and wishing I could send you spoons!🥄 ♥️

[@LaCafedora]

That's good advice, and I want to take it to heart, but it's so hard. =( Most days I feel like I'm not moving forward at all.

[@TriciaS1986]

Who do I talk to about the possibility of POTS?

[@jessy2648]

As a therapist, I tell my clients "I'm the expert on mental health, but you are the expert on you, so let's work together and figure this out"

[@alliem8700]

Honestly, often if we have rare conditions, we're more the expert on that than the professional as well! I can't tell you how many doctors I've had to spell the names of my conditions for, explain what they are, or wait for them to look up information. Which is absolutely fine, working in a medical field myself I 100% get it, nobody knows everything. But don't talk over me or tell me I know nothing when you're literally reading from a book with 20+ year outdated information.

[@o0Theresa0o]

@@alliem8700 This. I have literally spent the last 20 years reading about this very specific topic and staying on top of the most recent literature. That is not at all comparable to the 4 month course you took in med school 20 years ago.

[@LiveLaughLoveAnna1]

I love this so much. I’m a medical student and will 100% be using this with my future patients. Thank you :)

[@Yahwehbeliever]

I literally teared up reading this. Though I thankfully was blessed with great doctors earlier on, I still had several who were dismissive and condescending. Thank you for being part of the solution & treating your patients with respect and kindness!

[@jadamoore3424]

@@Yahwehbeliever 🙏🏽🙏🏽 I’m in the process of trying to find a good doc. It’s not easy at all. In and out of hospitals with no answers. Did you get diagnosed with CSF?

[@aprilandersen6940]

I work in Nuclear Medicine and we do a test called a CSF Leak. A radioactive tracer is injected into the csf space in the lumbar spine. Pledgets are inserted into the sinus cavity. The pledgets are removed and measured to see if any radioactive csf fluid has migrated to the sinus cavity. Images can also be taken to see if the activity is in the sinus cavity. If it is a real slow leak, the Pledgets may be kept in up to 24 hours.

[@cavlizzy]

THIS sounds brilliant!! To the point with common sense.

[@jeanrenn5269]

WOW thank you for posting this, I will definitely be asking my daughters neurologist to order this test!!! Wow just WOW!!!

[@courtneyhimes2063]

This sounds like the perfect test!

[@nonakabyrd5759]

Refer to a doctor who orders testing for Jen.

[@maggieslifeisawildride512]

Diagnostic X-ray tech here...a huge thank you for pointing out the obvious tests that can be performed. We know what tests to do to show what they're looking for and I wish the diagnosing doctors would ask us our opinion before slapping a big "I really don't know so this is what I'm saying you have" on a patient. I worked in an ER where the nurses and doctors would come and ask, "what should I order to see this?" It was an awesome relationship and how all modalities in healthcare should work. Thank you!

[@connermcintosh4322]

“I would like it noted in my medical chart that you are refusing the tests I have requested”. Say this and watch how quickly you’ll get your tests. You can follow up the results with someone less awful.

[@kitterzy]

I have had a neurologist reply with, “I won’t be bullied into ordering tests or noting anything other than medical dictation in your medical record.” Yeah... that.

[@MommingwithMigraine]

@@kitterzy omg 😳

[@yzar007]

Been there. Done that!!!

[@alyssamullen3523]

@@kitterzy "Who's bullying you? I've asked respectfully and professionally for a written denial and reasoning for said denial. Why is that not doable?" The fact that they tried to make themselves into the victim because you dared to advocate for yourself makes me sick.

[@kitterzy]

@@alyssamullen3523 It happened when I was stuck with insurance that limited who I could see for a neurologist. I will admit this was a decade ago, but it was a neurologist that felt I had pseudotumor cerebri. I wanted confirmation before I started medications for it, so that meant an LP with pressures, but I’d had disk degeneration so it would have to be done under fluoroscope. I said I wouldn’t take Diamox without an LP since my ophthalmological exam was normal. He said that, and I said nothing and never went back. Eventually the correct diagnosis was made when my insurance changed and I saw a specialist group (MHNI) in Ann Arbor, MI. (Migraine variant with aura)

[@kimberleybeaton8864]

Have you considered contacting the authors of the papers that you've been reading? They might be willing to take you on because of the abnormalities and unusual nature of your case. They might be willing to talk with you and have some suggestions on things that you can do. Just a suggestion, researchers are always looking for new and interesting cases and are usually very keen to help people. Good luck!

[@MsCateStar]

This is a good suggestion. I did that here in Australia with a particularly resistant strain of helicobacter pylori. Tracked down and contacted the guy ago developed the treatment protocol that is now used world wide. I didn't get to see him specifically, but one of his colleagues in his medical practice. I had to go through a general practitioner for the referral first - I basically said... this is my story, I need a referral to this guy /specialist. I talked get ear off about my medical history, I think she gave me the referral to have me gone 😂 Visited - treated - no more issues 👍🏼

[@israel963]

That is actually a really good idea!

[@JessBonomo]

As a phd student, definitely do that. Medical researchers love abnormal presentations of the diseases they study, and looking through their eyes, you'd be a certain case report publication haha (terrible motivation, I know, but at least they'd lsiten to you and be willing to do tests)

[@alexx1769]

I have actually ended appointments before with, "Ok, you're not listening to me. We're done." and their reaction has always been priceless. And I will not discuss anything further with them if I've reached that point. As soon as they see "anxiety and depression" on my chart suddenly that's the cause of everything. I know my symptoms; I've lived with them for all of my life. When I go to a doctor it means that this is something else and I need help identifying it. And apparently my knowledge of my own body and symptoms is meaningless to some asshole who can't be bothered to keep up to date with current medical literature. I've been told, "Well your symptoms can change, mental health can be tricky!" and nearly punched that guy in the throat. I KNOW THAT. I AM HERE BECAUSE MY BODY IS TELLING ME SOMETHING ELSE IS WRONG. Sorry for the rant, it just absolutely enrages me when doctors are dismissive and rude. Especially when a patient comes in having already done their own research. It almost makes things worse when you come in already equipped with knowledge!

[@ClaudiaPicciani]

My grandma is the same as you, she just leaves when a doctor is dismissive. She has strange things happening in her body, that no one can explain and when she told her new doctor "Hey i have cramps that start at my legs and travel up to my stomach and i can see them" he didn't belive her. She was laying down and decided ok, that stupid ass doctor, I'll show him. Because she has that "awesome" ability to cause a cramp just by thinking about it. And she sais to the doctor: "there is a cramp starting right here in a few seconds". Of course he was stil doupting her and was just okaying. but it did. and it looked like a aliensnake was under her skin, traveling up to her stomach. Really weird. And then the doctor was freaking out, which was hilarious. After that he was super aplogetic, and never ever questions her when she sais that something is wrong or different. she now goes exclusively to him because he got a valuable lesson that day. there are things he can't explain, that is ok but he should never not believe a patient just because he has never heard of it. I guess he will always keep this lesson haha

[@ae31860]

I see red just reading this short blurb... It really irks me when physicians act like that! I will add, FOR YOUR PIECE OF MIND ONLY, that *some* physical symptoms can be brought on by depression... But it's 100% a cop-out if ANY doctor used that as a trite dismissal of your symptoms. It takes testing and A LOT of research & ruling out to even pursue that line of thought. AND while psychosomatic symptoms and diseases do exist, it's MUCH more likely to be something comorbid. *You* are the expert of your specific body... Doctors are experts in the "normal" treatment and function of all bodies in their purview. Even very specialized physicians *can't* know and understand *everything* about *everyone*

[@likethatidea9899]

I am a pretty healthy 24 year old dude who has achieved nothing in his life and is struggling. I apparently do NOT have depression because depression comes in waves and isn´t permanent or whatever. That´s all I faced but that already pissed me off. Not a very good description of my struggles but that´s not my point. I am very interested in videos such as these but it is enraging to hear people staying calm like her. Maybe that´s an american thing, what do I know, but man it pisses me off. How are these dismissive, ignorant people supposed to change if nobody tells them they are being rude and stuck up? I have changed a lot in the past few years and I´m not taking any more crap from people as opposed to before. I guess what I´m trying to say is (I have difficulty collecting my thoughts and expressing them, if you couldn´t tell by now) that I love your comment and appreciate you.

[@angelland4962]

@@likethatidea9899 You are learning that you have to fight for yourself and be your own advocate. Depression can be intermittent, but there are also plenty of depression disorders that are not. Go to a different doctor, do some research on REPUTABLE medical websites, and find some support. Support can come in different forms! If you do not have family or friends that support you, consider alternatives...journaling, exercise, meditation, possibly a pet, and even finding support communities and people online to talk to! Email/text/DM/etc. can connect you with support and give an emotional buffer. You can “talk” freely without having to even disclose your location. Tears can flow and unless you decide to share that, no one will know. The hard part when you’re depressed can be feeling like you even want to try...YOU are worth the effort.♥️

[@kimwells8395]

I am the same as you as trying to let my doctor's know that I have had depression for years but I know my body when there are other symptoms. When they tell me it's just my depression I just get to frustrated. I really need to start what you do and start walking out of appointment if they continue down the rabbit hole of depression and that's all it is. 😕

[@robinhahnsopran]

Hi! EDS with migraine and tachycardia here. I literally started getting a positional headache that hasn't gone away four days ago, but that aside, while I don't have experience with a CSF leak, a member of my small local EDS group has, and we've all been working very closely to support each other through getting treatments and diagnosis and stuff. That friend was definitely symptomatic with her CSF leak for YEARS without meningitis, so I totally agree with you that the meningitis thing is... not a thing. Also, my friend DEFINITELY had intermittent, high-low pressure cycling with her CSF leak. I'm sorry that doctor was so dismissive. She sounds rude, damaging, and also completely wrong.

[@theycallmeCass]

Fellow EDSer here and I totally have the same symptoms. I get positional headaches off and on. Also, I have had horrible experiences with dr's. Although, with EDS as you know, that's not uncommon. I can't find any doctor in MN that will give me an upright scan or will look at CSF leak.

[@OrchestralOrg]

*i have QAV with bradycardia but have experienced tachycardia and HELL, NO. i am an absolute master of bradycardia but the one thing i am sheer incapable of tolerating or managing is tachycardia. however, i learned a tip that i thankfully have not had to put to the test: during an episode of tachycardia, bare down as if having a bowel movement and it can help the heart to reregulate itself. obviously, an individual would want to consult their team of people (docs, support systems, whatever) before giving it a go but it seems like it could be a very effective skill.*

[@MommingwithMigraine]

Thank you guys for helping me not feel so alone 😭💜💜💜💜💜💜💜💜💜💜💜

[@robinhahnsopran]

@@MommingwithMigraine Sending gentle hugs 💜You're not alone, long-term and fluctuating CSF leaks are real, and we all support you and hope you get the proper care you deserve really soon!

[@BellaAtkins]

@@OrchestralOrg that’s a type of valsava manoeuvre, which in patients with actual POTS will not work and will just make them pass out. It’s why a lot of old people end up collapsing while on the toilet, because their intracranial pressure has increased too greatly.

[@jeanrenn5269]

Dr. Ian Carroll at Stanford. His daughter had a CSF leak and was misdiagnosed for a long time. I believe they do telehealth but it might take a while to actual get through to him. Might have to go through the headache clinic first.

[@MommingwithMigraine]

I've been seen at their headache clinic, a couple years back. Maybe that'll help 😄

[@rebeccamunday3456]

Also, if you are sent to a neurologist (because it hasn’t been determined that you need brain surgery) and the doctor is worth their salt, when you describe your symptoms, they’ll think “That’s above my pay grade.” And call the neurosurgeon to refer you themselves.

[@gulthomas]

I am a doctor myself and I have EDS, POTS and recently diagnosed with a CSF leak. It took a really long time to get a diagnosis but Dr. Ian Carroll’s lectures and papers helped a lot and I took them with me to my appointments to show my doctors. If you have the option please go to him! He really is a pioneer in the field!

[@en_gamergirl4477]

Dr, Ian Carroll also gave a presentation "csf leaks-what the pots community should know". That exsist as a video here on yt, that I personaly think could be helpfull. (He also have help full links through out the presentation)

[@nicolenbbw7947]

@@MommingwithMigraine there are also dysautonomia specialists at Stanford which may help the complexity of CSF leaks and POTS (which is not uncommon)

[@Illyrian5]

It's astounding to me just how much of an advocate folks with chronic/undiagnosed illnesses need to be for themselves! I'm so glad you aren't just quietly going along with whatever the doctor says, especially when they aren't listening to you. I truly hope you get to see a competent doctor soon.

[@wanda9740]

Yes! I have so many words right now that I've had to delete myself and the words spilling out the end of my finger. Lord have mercy. I'm going to research our doctors at UAB in Alabama and also the ones in Nashville.

[@ae31860]

O. M. G. 👐👏👐👏🙌👏 I so agree.

[@ae31860]

@@wanda9740 glad I'm not the only one.... But I also wish I was...

[@caughtyalooking]

You are soooo right! I always say, self-advocacy and research is KEY with chronic or undiagnosed illnesses!

[@lyndseyalvey4121]

My mom had a hard getting a diagnosis for something because, like you, she does a lot of research going into an appointment, so doctors tended to roll their eyes and not listen. The time she was finally able to get a doctor to take her seriously, it was because she didn't mention the research. Instead, she made note of the words commonly used to describe the symptoms and made sure to use the ones applicable to her situation. Because she didn't mention the research, the doctor wasn't dismissive and actually listened, and even suggested it may be the very thing she was trying to guide him to. She was officially diagnosed not long after.

[@theshinythings123]

I don't understand this don't google thing that doctors have. They should be happy patients want to advocate for their own health and also want accurate information online for people to read. Especially with the limited time doctors appointments are.

[@1tennismama]

Good intell

[@cinnamonlehto4292]

@@theshinythings123 It’s so true. I’ve had to see a lot of specialists and it’s rare when they actually listen and are positive about the fact that I’ve done my research and ask lots of questions. I mean, I’m sure they hear their fair share of unreasonable diagnoses by Dr Google, but they’re supposed to help people who are suffering. Unfortunately I think a lot of the time we’re forced to manage the doctor’s ego just to get the information and care we need. Poor Jen, I’ve had a small taste of this with migraines and esp RLS, and it’s the worst feeling. It’s so discouraging. But Jen’s a badass and I don’t see her giving up anytime soon!

[@kikitauer]

I am glad your mom got diagnosed. This is a great idea and it is working. There is a problem with the fact that self diagnosis is not always correct so careful with that. Anyway, this method helped me a lot because I am autistic with interoception issues so I tend to talk about my problems a little differently than other people would have.

[@Prissy.6]

So sad that we have to stroke their ego and let them think they figured it out in order to get a diagnosis 🙄

[@anncarnes3562]

I went to 7 Rheumatologist, a dozen Neurologist and too many to count other Drs who "Honey'd" me out of the room before an 80 yr old Dermatologist diagnosed me with a rare autoimmune disorder that has ravished my body and ruined my life. Keep going and Good Luck!~

[@ClaudiaPicciani]

my best gp was a super old doctor who sadly had a heart attack 2 years after i found him. he's still alive but can't practice anymore. i miss him I really wonder what it is with the old ones. maybe they are so used to listening to ramblings of old people . I'm glad you got your diagnosis after all and I hope you life has improved!

[@binglemarie42]

I'm glad you finally got an answer!

[@TheMermaidSewist]

I have a similar story, and unfortunately in the decade I was undiagnosed, the autoimmune disorder did irreparable damage. So when Jen said “doing nothing does harm” I completely agree.

[@sarahg2665]

@@ClaudiaPicciani sometimes the older doctors have seen and read more cases, but some of them are the opposite - their info is all outdated and they’re unwilling to learn or change.

[@snoopyandgarfield]

If you don't mind sharing, I would be interested in knowing what the disorder is. If you don't want to share, it's totally understandable and fine.

[@ReinaElizondo]

When someone acts so hostile when questioned about things that are their responsibility or job, I take that as a red flag that they are feeling defensive because they don't actually know what they're doing - at least as well as they should. Major red flags with doctors acting so dismissive and/or hostile. This is so frustrating. Doctors should have to be more cutting edge. Instead their jobs are secured by payment whether or not they help you. They would rather do nothing and charge for that because doing the right treatment is not rewarded more than doing nothing and doing the wrong treatment can be heavily punished. I get so angry about doctors gaslighting and trivializing serious difficulties. I've internalized a lot of doubt when I have problems because of doctors who misdiagnosed, dismissed or even hinted that I was just being dramatic when they were just too proud to admit they had no idea how to help and didn't try to help me find answers or someone else who could. I also wonder if that surgeon would even normally be able to make a diagnosis? Maybe there's someone else that would normally refer her the case after they diagnosed it?

[@psychandtheology]

Exactly! "I don't know, but let me look into it," is a far better response than sheer arrogance! This is what's wrong with the medical community. They totally don't know it all (nor should they be expected to), but instead of just admitting it, they prefer to act like they're omniscient!

[@astridb9700]

Neurosurgeons could diagnose, but maybe this lady has holed up her experience and expertise on specific things, I would be interested in seeing what her CV says is her specialty, a neurologist vs. a neurosurgeon have different case loads.

[@ashleyofnaath]

You're a better person than me, and I applaud your grace. If a doctor called me honey after spending the entire appointment trivializing my suffering, I would've blew a gasket. I'd file every complaint I could against her.

[@amandabrooke5580]

If she’s concerned about the threat of meningitis, that it would happen within months, then a 5-6 month wait could have been lethal.

[@cinnamoon1455]

Especially with her being pregnant while potentially catching a meningitis. But doctors tend not to like it if you point out logical errors of theirs..

[@Jelleybean18]

Hahahahaha!!! Good point!!

[@AnnikaOakinnA]

This is what I was thinking!!! If you think she's at risk of getting meningitis (which can be fatal or have severe lifelong effects) within MONTHS, that kind of delay is absolutely inexcusable.

[@cestlaguy]

Really wish Jen thought to bring this up in her appointment

[@Jelleybean18]

Guylaine Richer de Lafleche Same but I think the doc would not have cared

[@naomisamuel2227]

As a medical student, I ABSOLUTELY think that patients should be encouraged to do their own research and question their doctors! Some of the people I go to school with are great, but there are also people I wouldn't trust to feed my goldfish, let alone save my life! It doesn't help that everything we are taught is about passing board exams- not helping patients. We also learn next to nothing about pain management/improving quality of life. Even when doctors ARE really well intentioned there is just SO MUCH information that it's impossible to know everything- the best doctors are the ones who admit when they aren't sure and know how to research effectively to figure things out (another skill we are NOT taught in school). I trust the scientific process. Well structured large-scale studies in peer reviewed journals are so much more reliable than one doctor's opinion. If you think a doctor is being dismissive, or is just misinformed (and the scientific consensus backs you up), there's a good chance you are right. If you're dealing with chronic/undiagnosed illness, hang in there! And never feel bad about advocating for yourself and your loved ones!

[@dezs.3100]

Yeah after being in college I really noticed how every subject has people who shouldn't be a teacher/doctor/whatever else but who manage to get through the process anyway. Plenty of people in my classes that I would not trust to teach my children and take care of them all day at school. I can imagine there are pre-med students like that as well.

[@francescoleman-williams911]

The most important thing I learnt at medical school was to know when I didn’t know and to say so AND to know where/who to go to for help/info!

[@TheOnlyLordRah]

a tip my sister with fibromyalgia gets from her psychologists/ other doctors is if you have an invisible chronic disease, for you/ your pain to be taken seriously, don't go to the appointment looking too put-together: don't wear make-up, wear simple cloths, and have the overall demeanour of someone in pain/ not doing well. My sister looks nice and masks her symptoms even on really bad days, and this tip really changed how eager doctors were to help. Stupid, but true...

[@Yahwehbeliever]

This!! It's absolutely ridiculous for those who are to be medical professionals, with years of schooling and knowledge, still can't get past judgement by appearance! It's infuriating! We should NOT have to do this to be seen, heard, and properly cared for, yet we do. 😡😔

[@showorker]

Heyyy! I have chronic migraines that leave me disabled, and orthostatic hypotension (dysautonomia). Also suspected eds but doctors have not taken me seriously 😑. One thing I have learned is to combine my background in Marketing with my doctor appointments. I often have to identify top "pain points" for a client's customers (like they wanna lose weight, they wanna save money etc etc) and have found the same logic applied to communicating with doctors. When I stopped overwhelming them with long explanations (which honestly were also confusing to myself) and instead picked my three top "pain points" , doctors naturally honed in because I spoke their 'goal oriented' and 'direct' inner drives. So I began stating what my too complaints/fears were before each appt. Only three. The rest of my concerns are brought up naturally after the doctor hears the main complaints and can focus on one point at a time. Only three complaints, for example: (often for me it's been) 1. The amount of pain I am limits my ability to live a decent quality of life. 2. Muscle spasms I can't control 3. I can't stand for longer than 5 minutes without passing out and my heart racing. AFTER I state those three pain points, I emphasize what I hope to get out of my appt: 1. To be able to sing in choir again. 2. To be able to do the dishes again without passing out. 3. To reliably go grocery shopping again. Stating these hopes had helped my doctors realize where my "normal" quality of life lies. They genuinely want to help, and they LOVE the idea of helping their own 'clients' (patients) reach their goals... Because then they can say they helped me ;) like a weird ego thang. So lead the conversation. Give your threes. They will be thankful for your organization, and can get a greater sense that you A. Want to improve and not waste their time and B. Trust them to help you heal. Work in bullet points. That's worked for me recently, compared to how anxious and less organized I first was when I was newly sick and scared. It's been 12 years now and I'm just finally getting answers supported by evidence-based science. You know yourself best. Trust your voice and instead of thinking of it as 'fighting', see it as more just more effective communication. You don't have to fight to be heard, you just have to be direct. Being direct is honest. If you feel like being sarcastic to a rude doctor, do not fight that instinct ;) that's your gut. She knows what's up. Doctors learn from their patients (the good and the bad). They can only help if you're honest, which means being direct and not taking their reactions personally, but def stating when you do not appreciate their behavior and it doesn't make you want to open up to them. Just as you are suffering they may feel unheard and misunderstood too. Help them hear you better. Be concise. Be direct. Treat them as equals.

[@justacupofsunshine3345]

great tip for those of us who have spent far too long talking to Doctors. thanks.

[@kikitauer]

I am autistic with bunch of health issues, some of them for over 20 years undiagnosed. Mysterious illness with communication issues is obviously not a great thing when it comes to diagnosing. I needed this advice desperately so thank you!*

[@zuzuspetals9281]

This is excellent advice for people with complicated and/or chronic medical issues and especially those of us who have done lots of research on them. One thing I’ve noticed about about Jen is she knows a lot but she seems to have trouble with staying on track and runs at high speed all the time. Bringing too much info to the conversation at rapid speed confuses the doctor, doctors aren’t inclined to do testing because insurance doesn’t want to pay for it and penalizes them for ordering them. Also try writing down the three or four issues you have and how they affect you so you can hand that to them to include in your files to look at after you leave. Then include in that all the issues you want to discuss in the future and how they affect your life and what your goals are so she can see that after you leave. The in person conversation is time limited, emotional, and with Jen’s rapid fire approach can tend to overwhelm a doctor who’s not used to patients who are more informed.

[@Amanda-gh6bq]

Dr. Lisa Sanders has a show on netflix where she helps find awesome doctors and diagnoses for people going through unknown diagnoses! You have a big following so I think you might be able to reach her! Not sure what she specializes in, but wanted to throw that out there!

[@HealingWithRachael]

When you said you have whooshing, it made me think of intracranial hypertension, which is high pressure surrounding the brain. IH can actually cause CSF leaks. When I got tested for a csf leak, I was actually diagnosed with very high intracranial pressure instead. Which is essentially the opposite problem! Some people also fluctuate between high and low pressure. They are complicated issues to address! Hope you find answers soon!

[@emyalcocer5133]

What were your symptoms? I came to compare my symptoms to her but my pain is opposite… it gets better when I get up. If I sit and lay down I am in trouble.

[@BriannahHoward]

I’m 14 and have hypertension. It can get up to 170/115+. I was diagnosed with vertabrobasilar insufficiency and am currently wearing a aspen vista C-collar. I have gotten 2 normal MRI/MRA and a CT scan diagnosed the vertabrobasilar insufficiency. I am currently feeling worse, my symptoms: runny nose, headaches/migraines, back pain, numbness in my face/legs, positional headaches, light and sound sensitivity etc… I told my mom about CSF leaks and that I may have one. She told me to stop getting information about it because than I get convinced I have it. But I talked with a parent who delt with the same thing I have and she is the one who recommended it may be a CSF leak. I visit my neurosurgeon for the first time in 8 days.

[@michellelarrivee8166]

I really really needed this. EVERYTHING you said about dealing with doctors and specialists has/is happening for me. It helps so much to know I'm not alone. I took a break from the whole process the last few months, now I feel the motivation to carry on and I'm excited to hear your tips on self advocacy. Thank you so much!

[@Lefitte]

I went from a doctor who is like this neurosurgeon to a doctor who looks up a diagnosis he's never heard of and thinks it's cool to learn something cool. So glad of that.

[@natalievandertie3166]

Doctors like this are so frustrating and can really make people not want to go in the future for being dismissed 😕 I'm sorry you went through that, it's an awful feeling. Prayers for speedy diagnosis 🤞💜

[@jadamoore3424]

Ugh exactly. It’s so frustrating trying to deal with it and get answers. Then it makes me push it off and suffer more because these doctors are usually always in a rush, rude, or dismissive.

[@hottwheels83]

Totally different situation but I loved it when I brought something to my Drs attention and he flat out said he didn't know but would look into it. And he actually did!

[@kdmill7563]

I’m so sorry about the dismissive doctor. My mom had a completely unrelated problem that brought us to interacting with lots of doctors, it was incredibly frustrating, your story is so familiar. Good luck finding a good doctor, you are not crazy! You deserve a conclusive answer, you deserve respect and care. Good luck Jen ❤️

[@Dan_The_Dude]

I’m so impressed with how well you advocate for yourself! It’s a really unfortunate reality of chronic illness, but it’s such a good skill to have

[@siridanicak3997]

Jenn, I am with you. Undiagnosed complex neuro s**t here. Abnormal sleep deprived EEG is all I have. 23yrs of struggling with ever changing symptoms. You are so square on this and so savvy - this means that you are much more likely to figure it out. I'm sending you strength and a big hug. Thank you for sharing your pain and frustration. You're NOT alone.

[@theshinythings123]

Kaiser in the bay area has a CSF leak program. That could be something to look into. Specifically in Santa Clara.

[@HaydenInTheHaze]

I really hope you can finally get a good doctor soon! Wishing you well!

[@MommingwithMigraine]

Thank you so much! Have an awesome weekend

[@lizshoemaker]

I really appreciate your evidence-based approach to getting your diagnosis. You explain it really well and it's nice to hear from someone who understands how the scientific process works.

[@katieprice3984]

Something for your next video: one of the biggest things I didn’t realize when I first entered the chronic illness world was it’s okay to call your doctors and be on top of them. I was nervous to check on progress with tests or results being sent to other doctors but I realized that you have to be in charge of your health. Usually they have a ton of other patients so it’s very easy for your file to get lost in the mix. Don’t be afraid to call and check on things and ask more questions!

[@ryleejohnson1938]

I’ve had doctors be dismissive so much that I get nervous for appointments and tests. I hate feeling like my pain and symptoms are invalidated

[@dezs.3100]

Yeah I've been dealing with migraines for YEARS and I hate that I haven't found a doctor who will take meseriously. I've avoided going to a new neurologist because of the last experience I had with one and because it takes months of waiting due to them being scheduled out so far. I don't want to wait for my first appointment for 2-3 months only to find out this doctor won't listen to a word I say.

[@allbymyshelf4125]

I have a whole lot of allergies and am currently on allergy shots to help reduce all my seasonal symptoms, but from years of experience with a constant post-nasal drip, it never tasted metallic. I know very well what metallic tastes like due to many, many nosebleeds, and am very sensitive to tastes, if it was metallic I would have noticed. Obviously, I'm only one person, but I completely agree, I have no idea why allergies would taste metallic. I've also dealt with wholly dismissive doctors who latched on to one thing early on and dismissed everything else I had to say with absolute confidence. It's horrible and I'm so sorry you had to go through that, especially with something that could potentially be the answer to all your problems. Best of luck to you on the rest of this journey and I hope the next person you go to can help you get to the bottom of things.

[@Jelleybean18]

No metallic taste here either xD

[@lizade3814]

Same here - allergies and post nasal drip for years, never a metallic taste.

[@Wendyroo6817]

Don’t give up, don’t let them tell you it’s psychosomatic. Neurosurgeons are the worst about that. You should try to go to the Mayo Clinic in Minnesota. They saved my husband’s life by diagnosing his atypical neurological condition.

[@kimberleylewis-unknownloca1846]

I have heard about that clinic in my Trigeminal Neuralgia group.

[@beccamajor6239]

When I finally got a Dr to agree to surgery to diagnose endo/remove cysts, I cried because I didn't believe how "easy" it was.

[@heartbeatofabook]

Tip for advocating for yourself (from a psychology student and patient): Write out a list of ways your symptoms hinder you in managing your daily life and in how they cause you suffering. E.g. "My pain at night is a 6 out of 10 and thus I can't sleep" or "On most days my brain fog is so bad, I don't manage to shower and cook, so I am relying on somebody else to cook for me" etc. It is really important to be very vocal about how your symptoms affect you. I usually add this list to the list of symptoms and my list of therapies I already tried, send it to the doctor's office in advance and also print it out and bring it to the appointment.

[@tracyhoudashelt3693]

You are your own best advocate, keep up what you are doing. I doubt she looked at any of your info/records before your appt, so the wait was for the 'typical' patient. It's tough to get through to someone who thinks they know more than you. You are right, she works for you!

[@tracyhoudashelt3693]

Sounds like she has enough work, isn't interested in helping someone in need.

[@silwwaswelt8355]

Dear Jen, I'm sorry for your experience. I can't really help but would like to share my compassion. I also have a couple of cronic illnesses and had a lot of difficult experiences with doctors. Sending love, Peggy

[@carolann811]

A bit of divergence into the feline realm. I have a cat called Hardy with a cleft palate and a fused jaw. When she was a kitten I was referred to a specialist feline dentist to try to treat her dental issues. He basically told me there was nothing he could do for her and said just make her comfortable until she's done with life and dismissed me. She's now two. My local vet takes care of her in a way I never thought he could. We're all good. Anyway, I send him a card twice a year, on Hardy's birthday in June and at Christmas, reminding him of the cat he dismissed and how well she's doing. I have no idea if he reads them or not. But it makes me feel - something - to remind him that he dismissed a cat that is thriving. Call it a tiny bit of satisfaction that he was wrong. And maybe that he should listen in the future.

[@dezs.3100]

Doing this and writing negative reviews online about them would be my top feel better things. If a doctor (human or pet doc) is not helpful, make it known to the public! If their wallet starts hurting then they will either step up or leave the practice.

[@tinymossdragon1508]

Oh my gosh I've had appointments like this!! SO MANY!! I'm 26. And I am debilitated every day. Crushed by severe daily headaches and migraines. They wont even give me emergency meds. This sort of doctor is crushing. I'm so sorry you went through this. If you keep looking you'll find the right doctor who will help you. Best of luck.

[@Aka_Vanii]

Sounds like that doctor thinks she knows everything and everybody that questions that she dismisses. I hope you find a better doctor soon, that doesn’t belittle you and will do the necessary testing. Keep on fighting and advocating for yourself. You got this ❤️

[@jo-annefarber1221]

I totally agree with you. You need to research and have some info from a few different sources before seeing a doctor or specialist. You are your best advocate, so don't give up. Loads of strength. X

[@LaCafedora]

Confidence! You are awesome. You have recorded the data. You have done the research. You have read the papers. You have self-questioned your own hypochondria and resisted the urge to jump to conclusions. Keep searching! You will eventually find a doctor that will listen and test you properly and persistently to determine the truth of your condition. I appreciate how hard it is to allocate the spoons to do all of this and be persistent in the face of such high resistance. It's so important to have a support system.

[@gavinlayla08]

Mine is Dr. Lawson at Tallahassee Neurological Clinic. He's phenomenal! He literally saved my life. I have IIH. He's placed 5 shunts in my body, listened to me and has done EVERY test I've requested and respected my decisions to decline tests. If you have ANY questions, please don't hesitate to reach out to me.

[@chandahagen5119]

And 40 years of this type of behavior is why I have Complex Medical PTSD and no real diagnosis for my severe chronic illnesses. Every single Dr I have seen (over 30 of them in the last 6 years) have behaved like this or worse. It feels impossible to EVER get help... I would REALLY REALLY REALLY appreciate a video on all your advice for dealing with these types of appointments. This could be a HUGE help for someone like me who gets very traumatized from interactions like this. I'm not as strong of a person as you are. I really value your experience, scientific knowledge and strength. Inspiration to someone like me who crumbles under situations like these!

[@TheCujo1956]

Amen to that I'm 64 and for most of of my life adult life I've try to get proper care. It has been a frustrating journey. I hope you get a the right doctor and I will be praying for you

[@colettebramwell-colyer]

My husbands friend has a CSF leak and has had many of the same symptoms as you. For years he was diagnosed as chronic migraines and ignored by doctors. Then he was told he had early onset ALS. It wasn’t until recently that he found a doctor that actually diagnosed him with a CSF leak. We are in Canada.

[@asecretcourtofcrowsandcloc4084]

I love the fact that you gave the analogy of it being a Customer Service interaction. I’m always reminding my family that I’m like the patient is a client and the doctor is the service provider. Best of luck finding a doctor out of state who will take you seriously and actually give you some useful tips and information

[@suzanneh.3822]

My oldest son has EDS. My daughter has markers for it. The thing I have learned from their nightmare of finding a dr that has even heard of EDS (forget them knowing how to treat it) is that YOU know your body better than anyone and that any “professional “ that dismisses your healthcare concerns is a BULLY. Never hesitate to fire them. The myriad of symptoms /conditions is scary. Also these Drs don’t have to live with the ramifications of their disregard of the information you are providing. Good luck.

[@israel963]

Haven’t gotten to the second half yet, but I’ve found an overconfident doc is a great sign you should just say “Thank you for your time” and not let them add inaccurate stuff to your record TBH 🤷‍♂️

[@MommingwithMigraine]

An excellent point.

[@kellyfischer6916]

Can't offer any advice (Canadian in Europe lol) but def have had experience with doctors who brush you off. Took a long time to get over that hill and find the right doctor for me. Thank god through the shitty ones there are the good ones out there. Ultimately: I understand your need for self care and limited spoons. It sounds incredibly draining and frustrating. Thank you so much for sharing your story and I wish I could convey how much I'm rooting for you and cheering you on. Sending hugs and well wishes!

[@lyndabird9401]

Advocate professionally. Use sources doctors would use, bring a copy of the article or study with you, ask for it to be added to your chart. Consult the National association for the condition, what is there testing/treatment protocol, take a copy for the doctor. Write out a timeline of your medical history, concerns and treatment. Keep a daily diary of symptoms and what you did and whether it worked- include pain scale number, temperature, BP, pulse whatever relates to your concern. If you know a nurse, take everything to them to see if they have a suggestion of other ??s to ask or information you should provide.

[@TheMermaidSewist]

Having specific logs or entries can be really helpful, because it also makes you sound more confident in your answer. Instead of saying “Well I have symptom x usually once a week” you can hand them your notes and say “ Here is the pattern I see with symptom X and how severe it is”

[@shaylahubacher1191]

Everyone is different, so I may be leading you in the wrong direction, but I had almost all the same symptoms that you do and after 3 years of struggling, they finally diagnosed me with chiari malformation. I had surgery and almost all my symptoms are gone and manageable.

[@pkmagic]

Jen, sorry you had to go through this. I'm a retired RN and I feel your frustration. Remember, CSF leaks are rare. You really need to be seeing someone with a track record. Compound that with the reality that lots of specialists just aren't good listeners. What you need is a teaching hospital with specialized neuroradiologists. Don't bother with anything less.

[@beautywearsboots6458]

So glad your husband was able to go with you! Having an advocate and caregiver at appointments is obviously so helpful when there's so much medical info going back and forth, but ugh I can't imagine going through that kind of dismissive appointment alone emotionally!

[@kenzielacosta8244]

I love watching your videos. Not only because I am learning new things but your voice, your demeanor, everything about you is just very calm and humble. Very sweet. I love it! I have grown up very sick with crohns and alot of other underlying and co existing things. Waiting for surgery can be so rough and a Rollercoaster. Now my husband is going through the same thing. I wish you the best and you are so brave and strong.

[@ae31860]

I'm glad you're continuing to be a good advocate for yourself. Good job. You're doing an admirable job. I sympathize with the frustration of this process. Continue on.

[@linneabreiter2049]

I definitely recommend going to the Mayo Clinic in Rochester Minnesota. Like other comments have said any time anyone in my family needs complex diagnoses or surgery this is the top place to go. The city is built with the idea in mind that people will be traveling from all over the country and world to go to this hospital. I highly recommend at minimal giving them a call to see what they could do.

[@TinyPigy282]

Don't feel that you have to rush out your videos on the day you normally upload.

[@amberend]

I usually don't comment on videos, but I totally understand the frustration in having a doctor dismissing the whole reason you meet with them in the first place. After having three people ask me if I had POTS since my symptoms matched pretty much perfectly, I went to see a cardiologist I was hoping to finally solve my long time mystery health problems. I had symptoms for a smidge less than a year at the time. As soon as I got in to see him, they took my blood pressure and heart rate sitting down and it was normal (as it always is sitting). Then, they did an ultrasound of my heart and said it looked great. After that, they had me do I test where I had to walk across the hall 10 times down and back, keeping up with the nurse (and no, me under 20, could not keep up with the maybe mid 60-year-old nurse). Immediately following, I did some jumping Jack's, then they took my heart rate again. I went back to the room and the cardiologist came in and said my heart rate was up to 160. He said that was higher than normal. His advise was to drink more water and eat more salt, which is recommended for POTS. However when I asked about POTS, he basically said it wasn't a real diagnosis. After eagerly awaiting that appointment, what a let down it was. He doesn't see my daily struggle and how disabled I truely am. Since then, I got in to see a nurologist at a university medical center and officially got diagnosed with POTS! In April, I go in for more testing to determine if I have a secondary condition as well. What I blessing it is to find the right doctor who knows the proper information on the condition. I pray all the same for you in your journey and anyone else struggling to find a proper diagnosis!

[@Lucyloo1891]

Thank you for showing how important it is to be your own advocate. Doctors are only as good as the knowledge they have and how willing they are to put the health of their patient before their own ego by seriously investigating any concerns or ideas their patient may have. A good doctor will say I don’t feel your symptoms indicate this but let’s check by ....

[@HealingWithRachael]

These are the top CSF leak doctors that I've heard of. I personally went to the Duke CSF clinic and was impressed with their care! Dr. Ian Caroll (California) Duke CSF leak clinic (North Carolina) Cedars-Sinai Not sure on what their remote consults/testing is like, but I think most of the top spontaneous CSF leak doctors prefer to do testing themselves, because they don't trust other doctors/hospitals to do it correctly. This is probably because its not a condition that is widely known about. All the best! ❤️️

[@taliciavanacor9885]

Yes, you definitely seem to have EDS and a gamut of dysautonomias. As someone that has also been on the chronic illness roller-coaster, thank you for bringing our struggle into the light!

[@rhywnn]

She looking for signs and symptoms to line up like a recipe. In some cases it works. Asymptomatic or non-symptomatic. You can have a condition yet not match all the symptoms or any of them. In your case, more than one thing going on causing contradicting signs and symptoms. I really feel you are correct so don't give up. Hopefully someone can point to in the direction of a Dr that will really look into this.

[@charlottelark5803]

Wow! You are brilliant, and so good at expressing your story. This post is a wonderful tool to give your (future) doctor before an appointment. I feel your frustration. Thank you for educating the community on how to interact with doctors, how to support your position, how to persevere, how to be respectful. My chronic illness is much less disabling, but undiagnosed and frustrating. You give me strength to see and ask yet another doctor what is wrong with me, and help me try to better organize my presentation of symptoms.

[@Atlamillia]

You're so much stronger than me 💛 I wouldn't have been able to resist yelling when she said "honey."

[@Jojoleen1]

If I were a doctor I certainly would be intimidated by you because you are on your game. Also as you already mentioned you have learned so much I hope you do become an advocate for others. God may have given you a gift thru your disability. I’ll keep watching. I’m so interested to find out how things go. You are really great at presenting your situation. 🌸

[@YRTheyDoingThis]

Thank you for doing this. It’s so upsetting when a doctor has made a determination about you before you even walk in the room. She probably looked at your file and thought your either a hypochondriac, or that you diagnosed yourself. So happy that your husband was with you to advocate for you. Please keep searching for answers. It sounded like her ego got in the way of helping you. I am sorry that happened.

[@anisaromano5352]

Two suggestions: 1. Mayo Clinic. 2. Dr. Lisa Sanders is an associate professor at the Yale University School of Medicine who also writes about medical mysteries for The New York Times Magazine. Write to her and ask her for help.

[@DW-lv1zr]

This is so familiar and infuriating. I am so sorry. Ive been through these scenarios for 8 years and had to leave the classroom because of it. Still only questions no answers. I feel you, well I’m my own way, and I send love and comfort and empathy your way. 💜

[@DW-lv1zr]

I meant teaching in the classroom. :)

[@cavlizzy]

It is amazing how much info you can cover, detail after detail, & NEVER lose your train of thought! I think you are brilliant Jen! (sorry I don't have any tips to add... but will be watching & listening next week) Being a native Texan, hearing "honey or darlin'" is fairly common But NEVER in a doctors office!!!!! Totally unacceptable. Period. You showed real restraint on that one.

[@denisesynder2799]

I’m so sorry for your suffering. I think I have a spontaneous spinal leak. I’ve suffered for 8 yrs or more. I’m so angry the dr acted like that. I’ve had plenty, I was in tears leaving. I said so if I’m fine why can’t I work, drive, sleep, go to my kids activities and just be a mom. Your letting me leave as I am( I was laying on the dr floor in the waiting room and the exam room) I get thoughts of ending my life because I’m worthless. I’m a burden. I have a cervical mylogram Tuesday , I’m scared. More scared of the possible disappointment of them saying I’m fine. Where will I go from there. I’m going to the Cleveland clinic. Your in my prayers. Love and light momma🦋

[@ranna6738]

I deeply feel you with the crappy dismissive doctors. It’s so damn hard with chronic illness. She sounds very ignorant, not even because of her knowledge, but because of how absolutely confident she was in her knowledge. If I find a doctor who is aware that they don’t know everything, I may have found a good one. (Medicine is always on the move. There’s no way they can be actively practicing AND keeping up on all studies and new information. Not enough time)

[@c.k.g.]

Best of luck to you, Jen! I really hope your next doctor visit goes much much better. I saw someone in the comments mention possibly contacting the authors of the papers you are reading.

[@sherriclark3908]

Great update, hope things get better for you. I have a question have you seen the video with Dr Ian Carroll from Stanford? CSF Leaks - What the POTS Community Should Know, presented by Dr. Ian Carroll

[@trishlett40]

I know it's 2 years since the video was posted. I don't have a CSF leak but I almost have a CSF blockage. Surgery to remove a 4th ventricle tumor in 4 days, this is surgery #3. I did have a CSF leak with my first operation, it leaked out the scar in back of my head & a lumbar puncture the next morning confirmed aseptic meningitis.

[@MichelleEatonIsAwesome]

I had a csf leak two years ago, but in my lower spine. I spent a week on bedrest before going to the ER where I spent two weeks before getting treated for a csf leak. My headaches were extremely positional, and I spent most of that three weeks totally flat just to cope. My primary symptoms were just the headache, so they tried every headache and migraine treatment first before considering a spinal issue. I had every med, nerve blocks, several scans, two spinal taps, and no definitive results. I have Marfans (closely related to EDS) which puts me at high risk of csf and an inactive VP shunt. Eventually, they agreed it was a CSF leak, but the dye test didn't show any leak. They wanted to do surgery on my shunt because they thought the leak was there. I thought the leak was in my spine, where I had fallen on ice a few months before, and I wanted a blood patch. They finally agreed to do the blood patch first and the exploratory surgery second if that didn't work. Fortunately it worked, the blood patch healed the leak, and I was able to go home without brain surgery. I'm glad I advocated for myself. I had doctors suggesting a family member give me massage for tension headaches while I hadn't been able to even be upright for two weeks and was terrified I was dying of some huge mystery and not being taken seriously. I had to keep repeating that I didn't want pain meds, just to find what's wrong. I don't wish that on anyone!

[@dystopian2153]

I had a horrible csf leak following spine surgery. Three days after surgery I was in excruciating pain and couldn't move my left leg. Was in hospital for three weeks but lucky for me they told me I had a leak following surgery in addition in to some other issues. It didn't seem like they were making into a conspiracy. I was very lucky. It was at Tampa general hospital. Maybe you could try there. Just realizing I'm a year late.

[@amayne4939]

This doctor infuriates me! I had a csf leak repair in 2019. I had a lot of leaking but from time to time it would stop as you said. The position headaches, everyone insisted that if I had the leak, I would be bed prone with severe head pain. I only had headaches once a month and it was from a tumor breaking the bones in my skull no the leaking. A symptom drs dismissed. I had dizziness if I moved my head too quick. I also did feel like it tasted metalic or salty. 4 doctors refused to see me even after a positive csf leak test because you can't just go around saying you have a csf leak. You are absolutely right that everyone can had different symptoms.

[@Ripplesinthewaters]

Oh yes, I have stories! My doctor didn’t believe me that I knew I was sick with an endocrine disorder. I had to demand a referral. I got my diagnosis in a week. PCOS. After fertility treatments, I had my son. Later, my son was sick. Again, dismissed. Got a referral to children’s hospital. Diagnosed with a rare allergy. My tonsils failed. Same doctor said I was fine. ENT said, “get them out”. I’ve had to fight every time! Doctors can be great but some are really pieces of work!

[@dezs.3100]

Good for you! I'm about to go see an ENT due to a "new" tonsil problem that has been nonstop for nearly a year. I say new because I've never had issues with my tonsils in my life and then suddenly they swell up, produce stones, hurt, and for the last 8 months just the right one is swollen and producing stones every day. I can't find much online other than bad oral hygiene but I definietly don't fit that category. The other thing is cancer but google always says cancer so I don't take that one too seriously. But yeah, I'm hoping this will be the doctor that listens since my general practitioner has put off all my problems since childhood and he won't listen to this one either.

[@TheMermaidSewist]

Not a resource available to everyone, but having a friend or partner to support you, be a witness, or be your reminders is helpful. I have a really hard time, due to ptsd, in situation where I have to self advocate, even if I have a list of topics or questions to bring up. When I was having really severe episodes of brain fog and confusion, I kept getting dismissed. So finally I brought along my best friend who saw me every day to essentially be a witness and explain from an outside perspective what it looked like when I would had episodes to verify that I was not exaggerating my symptoms. I had to fill out some paperwork and permissions to let her sit in, but it got the doctor to finally take me seriously enough to suggest getting tests done.

[@CFalcon04]

You should look at the Cleveland Clinic or the Mayo Clinic. Cleveland Clinic Main Campus is in Cleveland, OH, but they have locations in Florida and Nevada. The Mayo Clinic is located in Rochester, MN. They're often the best hospitals in the world. Cleveland Clinic is especially kind and empathetic and all of their staff is usually wonderful. I think if you call or email them you should be able to find out what insurance plans they take. Good luck! Feel better!

[@juliebey8240]

You are a beautiful, intelligent and compassionate woman. Keep fighting Jen!😊

[@3HeartsWereBreaking]

Uh, if she thinks meningitis would hit within a few months wouldn’t she have wanted to get you in as fast as possible just in case???

[@franny5156]

No because Jen already has the symptoms for like a year(i think?) And she said that jen would have already had meningitis...

[@3HeartsWereBreaking]

@@franny5156 Right but even then- if there was the slightest chance Jen does have a CFS leak shouldn’t she have rushed to diagnose if you she meningitis is a common complication, especially knowing Jen’s pregnant?

[@franny5156]

@@3HeartsWereBreaking yeah yeah of course she should shes the damn doctor... i just wanted to tell you her argument

[@chronicallypeaceful]

It hurts how much your experience with doctors resonates with my own. The system is only setup to handle things that can be diagnosed and treated relatively quickly or are so outrageously dramatic you could make a study (or documentary) on it. Doctors feel the pressure to perform well on paper and keep the revolving door of patients going, but that just doesn’t work for a lot of people with chronic illness. The only positive experiences I’ve had with doctors are by paying the big bucks to go to private practices. It shouldn’t be that way but it is. Looking forward to your tips & tricks video!

[@Trad634]

Call a research hospital and ask them their policy on out of state patients. Or contact a researcher on the papers you’ve read and found persuasive and ask if they know of a possible referral.

[@kyaevus4850]

Advice that my amazing GP told me when I was having doubts about looking for a new specialist: "It doesn't matter how many doctors you go to. Even if the answer is the same across the board, until you find a doctor who explains it and isn't dismissive, and you feel listens, you can keep looking. You're allowed to find the right doctor.

[@janayegilmore]

I’m so sorry you have had experiences like this but good for you for being a great advocate. My 13yo and I also have POTS and hEDS. I also have several other conditions and issues, many are still undiagnosed. Unfortunately I have had many appointments like this and unfortunately it’s all too common with these type of conditions. I basically had to research my symptoms and I figured out what my main conditions are then went to my pcp and thankfully she believed something was truly going on so she was willing to look into and send me to specialists. Which is where my horrible appointments happened. If you have EDS it’s like opening a can of worms and it makes it even more difficult to pin point what’s going on. Not much is simple or clear for us like it is for “normal” patients especially when it comes to invisible illnesses but that doesn’t mean we don’t deserve answers and respect. Thank you for sharing your experiences. I hope you get better care and answers soon.

[@mariposavioleta9007]

Thanks for sharing how your appointment went. I can't wait til next week to see the information so I can use it when I go to my new doctor next month. It's hard finding doctors here where I live in Canada and I finally found one and fired my old one.

[@briannehoward7206]

I would LOVE a video about the being a patient thing! Yes please! I have such bad issues with this it’s to the point I’ve put off seeing a doctor for too many years. Wishing you all the best and hope you get some relief soon!

[@yanasosnovskaya864]

I wish it will be mechanism to complain on such doctors. I think main quality of a good doctor is ability to listen to the patient and suggest ways to make patient's life better. If the doctor doesn't know symptoms, info about particular problems, just direct to other doctor who would know!

[@sofygrafe]

My god jen, that is horrible, and you are paying healthcare! Keep us updated. I was also let down by my doctor. I told him i had pain when i had a bowel mvt. He said its normal, happens. After 7 years, i discovered i am lactose intolerant and i have irritable bowel syndrome.

[@libbyd8626]

Fellow migraineur with other conditions and a list of “inconclusive” test results for various issues. Insurance dictates how drs order tests, etc. I wish they would disclose this to patients since we pay for our insurance and are the ones being dragged to seemingly (or actually) unnecessary testing. I think it’s important to question drs the way you do. A lot of people in my life don’t understand this. It’s hard when we suffer with chronic conditions, see a lot of drs and aren’t heard. I’ve seen wonderful drs and terrible ones. Understand “you can’t F up my life more than it is.” Hope you get answers soon!

[@Familylawgroup]

I had a lot of the same symptoms, but not all, and it turned out to be Eagles Syndrome with glossopharyngeal neuralgia. Mine was first suggested by my dentist and it was found after a neck CT and I had whooshing, ear pain, draining, etc. For me, it was caused by elongated AND calcified styloid hyoid processes that grew to such a length it touched the glossopharyngeal C8 nerve root. They are two separate conditions and glossopharyngeal neuralgia is usually addressed from microvascular decompression surgery by a neurosurgeon. My Eagles Syndrome, though, was FINALLY fixed by Dr. Randall Paniello from Washington University of St. Louis. He saved me...it took a total of 5 surgeries but I also had a paralyzed vocal cord from a spinal fusion that he also addressed at the same time. Excellent surgeon....take a serious look at Eagles Syndrome....I also had drainage from my nose.

[@citronkvisten]

My biggest pet peeve with doctors are that most seem to assume that all patients exaggerate when talking about their symptoms. It took me some time to realize that you really have to explain that when I say that I have “constant headaches” it means that I don’t have headache-free days 🤦🏻‍♀️

[@LissaAOE]

I’m a professor (not medical) and have access to journal articles through my university library. If you need help accessing journal articles about CSF leaks then let me know and we can connect via email.

[@MommingwithMigraine]

THANK YOU

[@RedRedux]

I leak through the sinus occasionally and actually did have meningitis about 14 years ago 🤔 but no one has ever put those two things together in my chart or my visit notes. So that sounds off. I'm in Canada so I don't have any doctor recommendations or articles for you but if I come across any I'll post them here. I'm HEDS, postural tachycardia and cholinergic anaphylaxis but I only lose consciousness when I'm anaphylactic from the sudden BP drop. You're awesome 😎 for not letting doctors push you around I wish more of us could stand up for ourselves like this ♥️♥️ sending love and cuddles to the new baby ♥️♥️

[@cutewhitedaisy]

My 8 year old is going through partial paralysis, migraines, ataxia...and we have been going to doctors with symptoms since he was 5. Our neurologist finally just wrote it off as psychosomatic and told me he needs to see a psych doctor. I found a website that does genetics testing for rare diseases so that's what we are pursuing. Our geneticist at least believes us and is helping us.

[@letsgetbetterbasketball7397]

How is your son?

[@steph3098]

Oh I can't wait for the tip vid! I'm sorry for your experience 💙

[@hollypurden8755]

Gosh I really hate that you had to sit there with her dismissing you like that! As an aspiring medical student I’ve even had experienced with me bringing up scientific information and the doctor feeling threatened or acting in an egotistical manner. I really don’t want to be like that!!! You’re story is incredibly fascinating and I really hope you keep pushing for concrete results! Much love from Australia 🇦🇺