When it's time for a 2nd opinion: A Rheumatologist's POV

[@Ilias99er]

Getting a second opinion some times is really important. Especially when some things feel off. The first rheumatologist I visited diagnosed me with Lupus, even though I didn't have any of the major Lupus symptoms and my bloodwork didn't show any signs of Lupus whatsoever. They prescribed some medication over the phone and never explained what Lupus is, what I should do, what kind of medication this is and how long I should take it for etc. So things didn't feel right and I got a second opinion. It turns out I have Dermatomyositis and not only that but the medication the first doc prescribed is known to have severe side effects to people with the specific auto antibodies I have. Thankfully I didn't start taking it and I had no problems, but if I hadn't known any better I could've gone through a lot of unnecessary suffering. Thank you so much for your videos! They are extremely helpful!!!

[@Paarthurnaxdova]

What specific auto antibodies do you have? Just wondering because I have anti scleroderma-70 antibodies and zero symptoms of that autoimmune

[@carlaprice.Nanaof2]

I’m so glad I found your channel. Thanks so much for sharing.

[@cu2891]

I wanted to reach out and thank you for these videos. They are really helpful when you are trying to find a diagnosis for your illnesses. I wanted to see if you will be doing a video on DFS70 as a reason for dismissing + ANA in diagnosis even with cyclical clinical symptoms and unusual blood labs. What are the next steps when this happens? My backstory: since my teens, I have had inflammation symptoms, diagnosed PCOS, etc, and went along these past 30 years with cycles of feeling great and not, some symptoms being more chronic than others. At 25 I had a positive ANA Homogenous pattern but no other follow-up after some extreme foot pain *normal weight at the time, I also had early high blood pressure issues. For years I noticed the effects of the sun were devastating so I avoid it as much as possible. Fast forward to now, my mom, my aunt, and my sister are struggling with confirmed AI (all different) and so I decided to go back to my doc and follow up on that ANA since I have struggled with symptoms after increased stress in my life. Now my ANA is still positive but has a speckled pattern and in the notes, it says that it is dense fine speckled indicating DFS70. No other ANAs are positive but c-reactive protein is high normal 10. I am not currently experiencing any extreme symptoms but 4 months ago it was extreme fatigue, bone aches, hair loss, high creatinine, high ferritin, and high alt with skin irritation. I think the frustration for me is that with digital charting and reporting, a patient's history is so accessible to each doctor now. Even if I can't remember why I was not well at one time, it is in my chart, and yet, there is no connecting the dots. Despite bringing up family history, despite showing older labs that were abnormal with no direct connection to any illnesses. Now I feel I am right here, with symptoms, with positive ANA and this DFS70 has canceled me moving forward. It would be nice to better understand this since this alone is preventing further investigation.

[@somehappenings246]

Thank you. My first rheumy saw ,e every 6 months plus a day (so I had to get a new referral from my family dr),...he saw me 8 minutes,....was dismissive, .. his plan was hydroxychloriquine indefinitely, until it gets bad then add other drugs.... he said I probably had ra/ss/sle, I had undiagnosed helobacter pyloris for 8 months,... changed family dr and GP....I have a great family dr now. But my new rheumy is only excited and engaged if I have extreme symptoms. I don’t want to be with a dr who will not help ,e on my health journey unless I’m in a mega flare. The whole point is to not have extremes. I want to prevent this. And clear diagnosis would be nice, so I don’t look crazy when I go to emergency,...I’ve been working hard to be healthy, ...I don’t want to lose this,...Time for a new rheumy.

[@BionicMilkaholic]

I started with orthopedist 6 years ago for knee pain. I went to 7 doctors in 6 years, including one who said "What do you want me to do about it." Recently, out of desperation, I drove 5 hours to go try another to see if they will listen. Orthopedist #8 was great! First person to say it could be rheumatoid arthritis. I'm following up to see if he's right. If it is, he wants this diagnosed before discussing surgery. He said my knees are misaligned and cartilage damage is enough to warrant partial knee replacement at the age of 36. Once we get the info on rheumatoid arthritis, he will refer me to another orthopedic surgeon with more experience with alignment problems. I left that appointment with hope for the first time in years! If this does turn out to be rheumatoid arthritis, hope I can find a good doctor fast, instead of going through another 7 to get to one good.

[@Zebragal0911]

I'm so grateful I found your channel

[@annabarclay7321]

We were told we are not allowed to switch once we have a first visit with a rheumatologist. So stressful! Hope we picked a good one. Not in love with our GI, debating giving him another chance or moving on. Love our new primary, took a while to find a right fit

[@TheKarahLife]

Three different rheumatologists in six years; each with a different diagnosis. How on earth do I know who is correct - or even closest to what’s really going on? I’m about to find a 4th at the big city teaching hospital (I’ve only had local rheumys) but frankly, I’m so exhausted from trying to get to the bottom of my issues. Thanks for the tips!

[@ResilientBeauty22]

I can relate, I am know looking for a third Rheumatologist opinion. I am exhausted, I am wasting valuable time with my health. I am just trying to find a doctor that listens and thoroughly explains what is going on with my health and a friendly respectable staff.

[@TheKarahLife]

@@ResilientBeauty22 isn’t it sad that we have to search so hard for that? 😢. My primary referred me to a teaching hospital’s rheumatologist who says in her bio that she is especially interested in seronegative patients. I’m praying she takes my case. The first time I asked to be referred to that hospital was five years ago and I’m still going to that specialist for another issue. Sending prayers for you too!!

[@picturegirl27]

I'm in the same situation. 2 years in a row testing positive for RA. Same office different Drs giving two different diagnosis. I'm mentally drained trying to figure it out on my own

[@TheKarahLife]

@@picturegirl27 it’s a lot of work - when our conditions make it hard to do so 😭. I do my best to journal everything so that I have documentation of my journey. It’s encouraging to see how far I’ve come but yes, it’s so frustrating trying to find team members that truly do care and will take the time… I’m still with my current rheumatologist (who basically collect my co-pay and checks in for five minutes (if that). I literally feel like I have to verbally hold him hostage by asking questions after questions after questions - just to get more time but I can clearly tell that he’s trying to get out of the room. I don’t care. I only get one body to care for. The rheumatologist I’m trying to get into isn’t taking new patients however, they did set me up with someone on her team. So at least I’m getting into the teaching hospital. Unfortunately that’s not until February - 2024. One day at a time, one moment at a time. Hang in there!! 🤗

[@myalockhart8041]

Could you do a video on UCTD? 😁

[@heatherr1141]

Insurance makes it hard sometimes

[@savagesfortruth]

I think having a second opinion is life saving I don’t think my doctor even likes me at all she very dismissive to my symptoms and illness she never listen to me. I came to her a years ago when I started having problems with my bones and other organs were imflamed but she doesn’t listen to me when I come and I tell her about my illness

[@JamiesLife]

I have several autoimmune problems after having double surgery and EBV THEN COV** TWICE each time my symptoms got worse and worse now I have to go to the doctor so much I have so many different referrals a cardiologist a gastroenterologist a rheumatologist and now a pulmonologist which I feel like can be very annoying to them I had to call frequently to get their attention though

[@Paarthurnaxdova]

Did you get the Cov** jab?

[@zebinmarais4697]

Report them for investigation to medical board, incompetent doctor’s needs to be stripped off their ability to put patients life’s at risk!

[@leslieisepic]

I decided to seek out a second opinion when the dry eye specialist I saw for the first time last July said my dry eye evaluation looked like it may be Sjögren’s. I ended up asking her to refer me to the rheumatologist she refers other patients similar to me. Best decision. I am definitely still in the early stage if it is Sjögren’s but he is listening and ordered follow up labs so when other things show he will catch it. I already have sjogren specific antibodies and celiac, but my Ana is still negative (it was a higher neg a year ago when I first was diagnosed with celiac than lowered by oct).

[@breklein3338]

Did u test positive on early sjogrens panel too?

[@ov3rlord666]

I'm switching rheums pretty much on account of him not collaborating well with my hematologist. Sometimes there's several docs in play, and they should communicate well. Having said that; do many Evan's Syndrome patients end up diagnosed with a CTD?

[@mamat792]

Initially, how do you rule out hypothyroid issues vs menopausal muscular-skeletal vs RA?

[@babybaby5893]

Very informative! Could you pls make a video about UCTD?

[@adrianram2234]

Yes please do they told me I have uctd and polyarthralgia I’m taken plaquenil first visit then second visit she gave me imuran I went to another doctor she said it sounds like I have lupus and fibromyalgia she said that’s the right prescription 😢😩😩🙄

[@babybaby5893]

@@adrianram2234 I am diagnosed with lupus and I am on plaquenil, but I am confused with lupus and UCTD bec I have no lupus antibodies, but SSA positive, the treatment on me is absolutely right, but i don’t have typical lupus symptoms. Except I used to have joint stiffness and fatigue. So confused……

[@UPDT8243]

@@adrianram2234 Hi, Adrian!! My Doctor told me that my pains on the spine and whole body is because I have fibromyalgia But I have all the symptoms of Lupus. And my young niece has Lupus. I do not like either one, But I live in so much pain on my joints , for years. My friend took me to the E.R about 2 years ago because I was in so much pain, all they did was, gave 2 Tylenol tablets 500 mg . Now , what is imuran ? is a medicine ?

[@UPDT8243]

Hello, Doctor !! Can you do a video about rheumatic fever ?

[@Anayyyyyyyyyyyy]

I have a rash on my face with swelling..my rheumatologist said the malar rash doesn't go over the nose..i have all the symptoms 😢😮

[@sharonvaldez9059]

I am in this exact situation. I live 3 hours from your office. Do you accept BCBS Health Select? And is there a long wait to get in with you? My Pain/Spine Dr told me he thought I should get a second opinion as far as a Rheumatoid Dr. He didn’t think I was being taken serious by RA Doc. I’m in so much pain in different areas every few days. Diagnosed with Fibromyalgia, RA, ADHD, depression, anxiety, PTSD, Sleep Apnea, constant fight or flight kicked in, and I KNOW my pain is kicking up my anxiety trying to “sit” and work and getting frustrated, brain fog is BAD!!!! I see Chiropractor every week and a half to 2 weeks for adjustments. Constant knots in my back from stress😭😭😭

[@Paarthurnaxdova]

Sister, immediately start a strict carnivore diet and it will cure 95% of everything you listed. Meat and water. KZbin “carnivore diet for autoimmune/depression”. Good luck

[@stephy4533]

Could please talk about blood markers

[@julioalay7004]

Great information

[@leticiagoff4488]

Is what I looking for , I have lots of pain, I was diagnose with Fibromyalgia 35 years ago. But all the medication for fibromyalgia it not working for me.I have rushes and diferentes parts on my body, I was texted for Sjögren’s syndrome, one day I have it and other ‘s say no. But still with lots of pain. Thank you . Leticia

[@adithyasrividya4220]

Hi madam plz explain undifferentiate artherities.

[@Bichonfrise369]

My question is are Rhumetology can deal with PTSD ? I have lupus AR Fabromayalgia.

[@Tinyteacher1111]

Is it possible to get a virtual appointment from Mi? I have Aetna and am soon to get back my teachers’ pension insurance:BCBSM (a very good PPO!)

[@nettiesanders676]

can you come to Devon in the uk 😅 i really want you as mu specialist

[@patriciap.9034]

Please tell me what makes a Doctor tell the patient she needs a second opinion. This Dr. is smart but she doesn’t like when patients won’t take Forteo shots for osteoporosis. She basically is cool and always distanced, yet she knows her Rheumatology well. Does the patient leave her?

[@UPDT8243]

@ Patricia P. Same story with me , My Rheumatologist doesn't like it either, he is always putting pressure on me ,that I need to take the intravenous solution for osteoporosis, But it has a lot of side effects. And I already have more than I can handle. Other than that , He is a cool Doctor.

[@patriciap.9034]

@@UPDT8243 I’m with you, I can’t handle any more pain from my illness and certain meds definitely make me suffer after effects. It’s like my Doctor can’t appreciate what I go through, and my age and how that affects me as well because I am over 70. She is young with very young children and looks quite healthy and peppy and that’s good for her. I have many severe allergies and when the doctors look at my allergy list they almost laugh. So when I tell her that I am worried about more side effects, and some of mine have been severe, it seems like she just doesn’t listen to me and poo poos away my reply. Take care.

[@Bichonfrise369]

In Canada 🇨🇦 you can’t change your dr. 😂

[@CurlyVeggie]

Yes you can. I’m Canadian and have changed my doctor. It just can take a awhile to get a referral and going through the process of signing with a new doctor and explaining your medical history is exhausting and time consuming.