Real Talk: Neuropathy Diagnosis And Pain Management

[@freecat1278]

Now that we have a governor who is interested in innovation, I'm trying to get him to motivate neurologists in my state to learn about treatments for neuropathy.

[@lucidmed3343]

Hi freecat! Excellent! Mike and I will do our part to support this with the “innovative governor” as well. Never give up

[@josearce4436]

Where is this?

[@myramitchell1613]

Do you have information for VA was just diagnosed on last week.😮

[@terristripstipsandtalk]

It's like pain management has become an underground type of treatment. Insurance companies won't pay for anything because they are in cahoots with those pharmaceuticals. I'm not against pharmaceuticals by any means but pain patients are so dismissed. Thank you for these videos I too am binge watching your videos,with happy tears because you get It!!!!!!!!! ❤

[@meanna6495]

In the summer of 2023 I suddenly developed a burning pain in my feet, I'd never had that before . It started on my big toes and then gradually developed further on to my feet, lower legs, upper legs and then to the hands and arms, and eventually I had patches of these awful burning sensations, pins&needles, itchin ( on and off) all over my body. It started a few days after a 5-day antibiotic course , so I assumed there might have been a connection ? . I had the usual neurologic tests and blood tests , and the only thing that was abnormal was my vitamin B6 level , which was way too high. Since then I've been learning a lot about vitamin B6 toxicity as a likely cause of 'idiopathic ' small fiber neuropathy. I'm now trying to find my way back with a 'low B6 diet ( not going over RDA)' and proper hydration . I'm hoping and praying that the pain and other sensory sensations will eventually get less intense. It's very hard to deal with this !

[@ElizabethAnn12459]

It’s poison

[@patriciap.9034]

I subscribed today after seeing one of your videos. This is my second one tonight. I had a punch biopsy and it showed SFN. I was told someone would speak to me and I’m still waiting over four years. The doctor said don’t worry, it’s from your pre-diabetes. I’m up every night with severe burning but eventually I fall asleep. It wasn’t this bad four years ago. I have pain patches but how do they go on the feet. My legs started burning down by my ankles. I have connective tissue disease. Lupus., TIA’s. Glad to find you. I hope I learn something to help myself. I’m in my mid 70’s. Bless you both for helping others.

[@lucidmed3343]

Hi patriciap! Thank you for commenting and subscribing. Unfortunately this trajectory is not uncommon with SFN. It can take years to find a provider who listens and works with you. Given you have Lupus and pre-diabetes the SFN will be autoimmune in nature which would most likely make you a candidate for IVIG. A few things I might suggest which may help...do you take R-Alpha Lipoic Acid and/or Benfotiamine by chance? If not I'd speak with your doc about it. They're over the counter supplements but they've made a massive difference in my own neuropathy (I'm a type 1 diabetic). If you'd like to email me directly so we can speak more freely please do so at [e-mail]. This way I can maybe steer you towards a doc/facility who I know works well with these types of diagnosis. Also, do you have lidocaine patches? or icy hot type patches? I might also suggest a TENS unit. I've included 2 videos I had done on these suggestions. Please don't hesitate to email me as Mike and I are both more than happy to assist. Alpha lipoic acid/benfotiamine video: kzbin.info/www/bejne/nardh3SBl56Cfbs TENS Unit video: kzbin.info/www/bejne/lWqlf62Ejqt6fbs Danielle

[@lucidmed3343]

Hi Patricia, I believe you emailed me however I sent my response and it got bounced back because your message came attached to a phone # not an email address. If you did email me please provide your email address so I can send my response :). I'm so happy I found your comment again. I searched through 3 videos!!! Danielle

[@VS-ju2cc]

Danielle​@@lucidmed3343

[@VaporRize08]

​@@lucidmed3343Is R Ala safe with mercury fillings? Terrified to tape it

[@7THxSIGN]

Thank you both so much for this video. The doctors I have seen have failed me. I know for a fact I developed this crap from when I contracted COVID over two years ago. Since then I have had burning feet. It’s even worse when I have shoes on, so heat makes it worse.

[@lucidmed3343]

Hi 7THxSIGN! You're so welcome. Thank you for commenting on the video and sharing your struggle. It's not the 1st Mike and I have heard SFN getting triggered post vaccine/infection. Frustrates me to no end. Your comments help youtube see that people are interacting with the video which, in turn, causes them to push it out more. It's a group effort so again thank you for taking the time to comment and help get the word out. We're tireless when it comes to SFN/autoimmune disease. Danielle

[@padmepadme]

Question about IVIG: How are the blood plasma donations screened for diseases? Is it possible that diseases [which escaped the screening processes] could be hiding in these IVIGs? Is there a risk probability for that? Thank you for responding to these concerns.

[@torromezzanini4812]

Interesting. I have the problem and observation with warm temperature. I found up to now no help.

[@HicksGribble]

Shoes def exacerbate my SFN

[@dalehallett8449]

I've dealt with motor and sensory neuropathy for over 30 years. The only prescription drug that helped was quinine sulfate, which has been outlawed in the USA. Alpha lipoic acid is the only supplement that has helped. They all help a little, but Thio gel is the only brand I consider a game changer. Good luck everyone

[@lucidmed3343]

Hi! Thanks for commenting and sharing your suggestions and experience. Danielle

[@NixieJean]

My biopsies were positive and it took 20 years. Thanks for this video. I’m not sure if I am ready to try IVIG. But this is very informative

[@bahaaworld]

how are you today ? did your situation got worse?

[@phinehasfenne]

I have small fiber neuropathy in my feet and recently moving up my legs. Over the years I have seen so my Dr’s and none of them seemed to know what they are talking about. Here take these pills and come back later! 😅 I thought this video was more informative than anything I’ve seen previously! 👍👍👍

[@speedysmoke]

Hi Danielle, it's been awhile. This is Joyce. Just got EMG Thursday. It had been about 3 yrs since last one. Had complaints to my neuro so he checked me out. He was pleased to tell me some parts were little better, some were the same. I said now what, because that doesn't match up to my complaints. He wants me to get MRI of neck and head. Ughhh, I'd rather do anything than an MRI 😬. Btw, my white cells have been behaving.. .thankfully. Good to see you again, and liked this video 👍. Thank you for your work.

[@lucidmed3343]

Hi Joyce! Great to hear from you and that you’re doing well. Yes, MRI’s are not anyone’s idea of a good time but provide a wealth of info. Yay for the white cells too !!💪💪

[@7THxSIGN]

MRIs suck. I had a head MRI in the tunnel. I’m not a small guy and I barely fit in the machine. The helmet made things even worse. See if you can get a exterior MRI instead. Especially if you’re claustrophobic.

[@speedysmoke]

@@7THxSIGNI agree, they suck. I am claustrophobic, plus I've had back surgery so laying on my back so still on hard surface makes it worse. My doc prescribed med for me to get through it. Now, it's finding someone to take me.

[@7THxSIGN]

@@speedysmoke I’m so sorry you are going through this. I also have been battling chronic lower back pain for a couple years now. Really takes a toll on you. I wish you all the best and health.

[@speedysmoke]

@@7THxSIGN thank you so much. Thankfully my back surgery was a success in 1985. With the med I can get through the MRI, I have before. Now if I can just get there. Thoughts to you, I totally understand about the lower back pain

[@angelaspinillo5319]

I was just told today that even if my SFSN is being caused by my autoimmune, my only answer is Gabapentin. I left the office so discouraged and then just stumbled across your video. I was told to just cancel my skin biopsy next week bc my clinical diagnosis was all I really needed…that the biopsy can’t do anything else to help me or provide any more to my back story. But then your video says the complete opposite. And it sounds like a skin biopsy is NECESSARY if I want to pursue IVIG down the road. I’m at a loss. And in chronic pain and losing the ability to walk freely…and I’m only 47. Help :-( Is there a facility near me (Chicago) that does IVIG? I’d like to speak with someone directly to learn more. Thank you!

[@lucidmed3343]

Hi Angela! Thanks for commenting. Depending on what your diagnosis is (MG, Lupus, etc) then yes, we can get Ig approved without the skin biopsy. There are certain DX's that merit IVIG therapy on their own and if SFN has been diagnosed in addition to them, then we'd likely submit for approval based on the primary diagnosis. If it's for SFN, it is absolutely neccessary ...you are correct. Insurance always wants to see evidence of SFN and the history of testing leading up to official diagnosis ruling out other potential causes. If that doesn't make any sense I'd be happy to expand on this via email [e-mail]. I'm so sorry to hear all of this. IVIG is often done as a home based infusion but if that's not something you're comfortable with then there are plenty of infusion suites that also infuse people. Danielle

[@ElizabethAnn12459]

B6 toxicity is everywhere. The FDA needs to put regulation on that vitamin. It’s the cause of most idiopathic neuropathies and is severely underdiagnosed.

[@arlenebayron2448]

Magnesium Glycinate helps me at night time. My Neurologist suggested for me. I refuse to take Gabapetin. Im not diabetic nor do I have an Autoimmune disorder. The neuropathy occurred after contracting COVID. Going to try Acupuncture..

[@LisaL-yl9zm]

Im exactly like you - perfectly healthy, then got covid and by day 3 my legs were burning, tingling and numb- 2yrs in and noone has a clue. I did acupuncture- did get some relief but not 100%

[@jamesmcintyre3456]

Great content, thank you. 🎉 However, I must say are all those beeps and boops necessary. Great content does not need distractions

[@lucidmed3343]

Hi james! Thank you and I know...I get super carried away with thinking I need to add sound lol. I'm working on it. Then I watch the video back and I'm even getting aggravated with it 😂😂. Glad you enjoyed. I'll be uploading the other video with my colleague Mike this week...I think it's a bit toned down with the beeps and boops. You'll have to let me know. D

[@samanthaorourme8426]

I’m in the uk. If I mention SFN to anyone,they literally never heard of it 😢 but Iv had it for 13 years now . My pain clinic has just offered me lidocaine infusion or ketamine infusion 😊

[@leaveittolefty]

thought my neuropathy situation was sorted. i thought wrong-- diagnosed with ALS one month ago. death sentence. Dr said can have overlapping conditions. so all of you listen up: slap on lidocaine, get some good shoes and go go go go !live your life! don't stay here looking at health problems! go! enjoy! do it for those of us who cannot💐

[@shaunanorman4804]

I am going to the Dr today. What test do I ask for ?

[@motoman5208]

I have post Covid skin burning. Even though my EMG and skin punch were negative I guess I could still be sfn positive. Hoping for help soon. This is awful

[@lucidmed3343]

Hi motoman! I hear you. Trust me I do. The skin burning symptom seems to be something I'm hearing about more and more. The skin biopsy being negative tells me it's probably not SFN but have they drawn labs as well (ANA?). If you want to email me directly please do so at [e-mail]. This way I can ask a few more questions. Danielle

[@alisamarotta2352]

How often do u normally need to go treaatments. Currently on a min of 2400 of guabapentin and cbds and still have significant flareups where i cant walk so just laid up in bed located in NYC and already was diagnosed need significant change

[@lucidmed3343]

Hi Alisa! Normally you’ll have a loading dose over 5 days then maintenance will be anywhere from 1-5 days depending on # of grams. Maintenance is usually monthly. There’s also subcutaneous Ig which is self administered and normally weekly. I did another video on SCIG if you’d like more info. Danielle

[@alisamarotta2352]

@@lucidmed3343 yes I'd u can send whatever info...I also several other medical conditions including migraines with auras emissions from cancers , etc..

[@RufflesThe2nd]

I am a 21 year old male who was recently diagnosed with SFN after a skin biopsy. The odd thing is my main symptom is what feels like a extremely cold dull pain in my feet/toes that is constant throught the day. It has caused me to be unable to live my life and is very debilitating. I am just curious if youve ever heard of something similar or heard of any similar symptoms in others? The video was very informative btw

[@lisachristinaconfirmed5067]

If we go to get a skin punch biopsy, is there anything that we need to know on the medical professional who’s testing for it? Are these tests pretty easy or are they more complex?

[@lucidmed3343]

Hi Lisa! It's a pretty straightforward procedure. The provider will typically use a kit that contains everything they'll need and the area will be numbed and a small 3mm skin punch will be taken. I'd ask if they've done them before but other than that it's not a super big deal. D

[@shaunanorman4804]

I have been struggling for years just get meds thrown at me. I am in desperate need of this

[@lucidmed3343]

Hi Shauna! You're not alone in that experience. It's exhausting to say the least. Have you seen a neurologist/neuromuscular specialist? If you'd like to email me separately please do so at [e-mail]. D

[@kathyeast812]

Danielle, I have been diagnosed with idiopathic SFN. I have since developed what I believe to be erythromalagia, but this hasn’t been officially diagnosed. Apparently, this condition is considered rare, however, more common with SFN. My GP has had one patient with this in all her years of practice. Is there anyway that you could address erythromalagia, and any known treatments? This has significantly reduced my quality of life due to burning feet and inability to tolerate the sun anymore. Thanks so much!

[@bw7057]

I would never get my doctor to agree with this here in Canada.

[@abaadad6833]

waited long for this video

[@lucidmed3343]

Good morning! I know trust me I know. Good news is we recorded several so there will be a few. Danielle

[@anned8634]

i spent 20 years being DXed with fibro only to be maltreated by doctors. i also have sarcoidosis and found 80% have small fiber polyneuropathy it was hard to get my VA hospital to do the test for small fiber polyneuropathy. would IVIG work after all this time

[@bootsperformance]

I was diagnosed with peripheral neuropathy about a year and a half ago. I had been having trouble for about 8 years. In that time I had been asking my dermatologist what's going on on my legs? He told me I was just getting older. When he retired I got a new dermatologist who took one look at my legs and said oh my God what's going on here I got to get a biopsy. And I was diagnosed with small fiber neuropathy. I've had many other illnesses due to chemical exposure. Could this be chemical exposure as well?

[@sfn-life]

How many have had success doing IVIG AND Plasmaphoresis or IVIG and Rituxan or IVIG AND another infusion?

[@lucidmed3343]

Hi jfouts! Unfortunately this is a number that I couldn't estimate. In our experience IVIG is very effective. The combination of PLEX and Ig is used as a bridge therapy and many have said it saved their lives. I wish I had a better answer for you but it comes down to what works for an individual, their symptoms, diagnosis, and comorbid conditions. D

[@sfn-life]

@lucidmed3343 I've been on ivig for about 2 years...but had sfn over a decade before that. I'm getting about 10% relief...but...it has helped some with dysautonomia issues. I've only fainted once in that amount of time...have new onset dizzy and short of breath issues though in last 4 to 6 months....and balance issues...pain is still like I am burning alive. It I'd very hard to take the severe pain...and to deal with severe fatigue.

[@trianapowell7252]

Hi! I’ve had a horrible 2023 going through therapists and doctors. I finally got diagnosed with POTS in December and the cardiologist said he doesn’t know much about POTS and if I want further help, I should go to Baltimore which is 2 hours away for me. What would you suggest? Is there any good doctors near Philly which is just an hour away?

[@lucidmed3343]

Hi traina! Thanks for commenting and I'm so sorry you're going through this. I commend your cardiologist for admitting he isn't comfortable treating it...I'm truly impressed if I'm honest. Yes, the POTS clinic is excellent at Hopkins and I know Dr. Chung very well, but I also cover the Philly area and will absolutely do a bit of footwork and help you zero in a a provider in your area. If you could email me at [e-mail] that would be great. This way once I get a few names for you we can communicate directly. Danielle

[@bw7057]

Great episode, but far too many visual distractions and sounds…

[@lucidmed3343]

Hi BW! Thanks for the comments and feedback. Always appreciated (good or bad). Danielle

[@dudejoyce]

Does it only take care of pain? Does it fix anything else like the numbness or tingling?

[@lucidmed3343]

Hi Chris! Thanks for your question. Ig is a tremendous antiinflammatory so by reducing the inflammation it decreases the pain. It also does help with numbness as the nerves heal and regenerate (depending on what types of nerves are effected). I've put the link to the IVIG series here for you 👉👉kzbin.info/aero/PL8VVngHCfxXoyqml19LU0-jQTKLgp4i-2&si=xzlgNAz3D_zXVL3a If you have additional questions please feel free to email me directly at [e-mail] Danielle

[@SylviavonBergen]

I have EDS and was recently diagnosed via skin punch biopsy with SFN. My ANA's & everything else tested remain fine, no known genetic link for the EDS, no other autoimmune conditions that are known. Have you had patient with EDS and SFN respond favorably to this treatment regimen? How often do you see it in EDS.

[@lucidmed3343]

Hi there! Thanks for commenting and reaching out. Yes, EDS is very commonly associated with SFN. POTS/dysautonomia as well unfortunately. I'd say maybe a quarter of the patients Mike and I have seen have EDS so, not a huge number but certainly not insignificant either. The patients we have on IVIG (who have been appropriately diagnosed) do respond very well. Often being the difference between living a normal life and descending into a black hole of despair and pain. There are many facets to Ig therapy and the conditions it's effective for. Often, especially with autoimmune disease, they're overlapping. I've yet to encounter someone with SFN or EDS that doesn't also have other conditions (POTS, CRPS, fibromyalgia, myositis etc). At the start of therapy you may feel worse before you feel better, or it may take a few cycles to notice improvement. D

[@BeachMafia2023]

Hi. I got to this video bc I have hEDS and since my last severe COVID, last Feb, my bilateral leg pain, tingling, vibrations and now feet burning, led me to learn about SFN. I think I have it but I have not mentioned it to any doctor. I currently fired my primary and only goto the pain clinic doc. My pain doctor (anesthesiologist) treats my pain but is clueless about all this other leg stuff and wants me to goto a neuro. I had pain before COVID but this neuro stuff is new. As someone with EDS, I am sure you understand that going to new docs sucks bc most know nothing about EDS or they just blame everything on EDS. Or they don’t know what to say or do and send you on your way. Anyways, just wanted to comment and let you know you aren’t alone. Best wishes.

[@sannaumiec5013]

I was dx with SFN with no known cause but I am being tested every 6 months for paraneoplastic syndrome. My neurologist says it's rare but I'm borderline and since I have continue muscle contractions/ spasms and I'm not diabetic it's a concern. Anyone else ?

[@darellrolle6706]

My niece was diagnosed with neuropathy and my family is looking for a rehab facility that she can go to get the correct therapy and medication that she needs. We are in the Palm Bay Florida area. Does anyone knows of a research/ rehab facility. Please reach out to me.

[@kellycote9561]

Does anyone know what dosage per kilogram for sfn

[@lucidmed3343]

Hi Kelly! For SFN given it's neurology based the dosing is a bit higher than it is for immunology. Typical dosing is 2gm/kg of body weight

[@lucidmed3343]

I had done another video on this if you wish to take a look. kzbin.info/www/bejne/jpXbaGyBds6XoLssi=ZtLE7qRKom4xlGra Danielle

[@munkami]

There was no mention of B12 deficiency as a cause of SFN. B12 injections can effectively treat metabolic problems causing SFN.

[@lucidmed3343]

Hi Mike, thanks for commenting and offering this info. Correct, there are several causes of SFN so to mention them all would' ve been almost impossible. I did do another video covering SFN specifically which I've included here if you'd like to watch 👉👉 kzbin.info/www/bejne/pGKzZJZ8eaqWgLs MTHFR gene mutation can impact absorption however so it's recommended that this be tested prior to beginning supplementation. D

[@jeffreyjitterbug]

Good info, thanks! The special affect noises distracting and eventually annoying.

[@lucidmed3343]

Hi Jeff! Thanks so much for commenting and....I know trust me. I'm still figuring out the editing and what sounds great at the time....not so much after watching it back. I'm working on it but I'm happy you found the channel and welcome :) D

[@jeffreyjitterbug]

@@lucidmed3343 Thanks I figured maybe you got some new software 😄 Your videos are excellent especially since you are a sufferer too. I'm here searching for guidance for my brother who can barely walk due to PN. Your Top 10 Treatments for 2023 is perfect for him! He is on Gabapentin and now cannot drive because he can't feel the pedals (63 yr old). He has an appointment with a TENS specialist end of this month. I'm the go-to researcher of the family and a veteran consumer of CAM and traditional so I weed out the truth from the scams and give my family the available options with recommendations. Your information and advice will help him I'm sure as long as he can change his ways (poor diet, lack of exercise, and other bad vices). Bless you 🙏😘

[@bahaaworld]

Is idiopathic SFN a progressive disease? Does it get worse with time , or not. I've had it for 9 years and it seems like it didn't get worse. and can it effect the bladder and bowel ?

[@lucidmed3343]

Hi Bahaaworld! "Idiopathic" means we don't know the origin of the issue. SFN can eventually improve and even go away on it's own in certain cases (b6 toxicity, antibiotic toxicity) but if it falls outside of things like this then yes it is progressive. I'm not sure what treatments you've tried for your SFN but if you've had it for 9 years it's likely progressed to the point it'll require something like IVIG to halt further damage. It can certainly efffect bowel and bladder--I had done a video on SFN which I've added here 👉kzbin.info/www/bejne/pGKzZJZ8eaqWgLssi=iJcUZkafWEUI4AaS Let me know if you have additional questions after watching. Danielle

[@bahaaworld]

@lucidmed3343 but how come i had it for 9 years with no progression in the symptoms?!

[@FoxRogers]

My 17 year old was just dx with this and POTS at Stanford

[@lucidmed3343]

Hi there, I'm so sorry to hear this. SFN and POTS tend to be linked as I'm sure you found out. I did a video on POTS not long ago which I've pasted here for you if you'd like to watch. My thoughts are with you. Please let me know if I can answer any questions for you. Danielle POTS/Dysautonomia: kzbin.info/www/bejne/rmWYkGuwmNtmoa8si=M2XjclKVjTe6n-Os

[@FoxRogers]

@lucidmed3343 thanks! I have it too as does my other son, I had been telling his Dr for 4 years this was a root cause. Have you done anything in regards to hEDS, MCAS and POTS together? We have that and I'm very curious about it. I think the hEDS causes the others bc of physically changing how the body systems can operate

[@lucidmed3343]

@@FoxRogers Hi again! Not to sound strange but every now and then I think the universe sends me a clear sign that I need to cover a topic because in the last 24 hrs you're the 20th viewer who has asked me to consider covering EDS and its variations-vEDS, hEDS etc. I will be adding it to the schedule and start researching the topic. In the interim I hope you and your family are doing ok-well wishes and love your way D

[@shaunanorman4804]

Any change you have step by step paper work the Dr could feel out ?😊

[@lucidmed3343]

Hi Shauna! We do have a referral form yes, however it'll be specific to the specialty pharmacy Mike and I work with. If you'd like to email me I can provide more information. Danielle

[@shaunanorman4804]

What is your email?

[@lucidmed3343]

@@shaunanorman4804 [e-mail]

[@daviddjerassi]

I just love your attitude your highly intelligent but also relaxed and easy going and don't mind sending your self up that makes us listen to the end i am crazy about you and your Dogs Lady you have a follower here thank you for another very informative video.

[@janicenimmons5438]

I’m Janice in SC I was diagnosed with small cell neuropathy at Duke university about 3years ago. I have a bad history with drugs. Legs are getting worse. Memory loss is worse,weigh gain 40+ lbs. I had breast cancer in 2020. I had thoracic outlet surgery in Dec 1999. The doctor did 5-7 symptomaties sorry. He never told me this. Surgery was done at Emory . I have an oncologist that likes something that makes he think. He will be interested in this information. Thanks for your work. I will be watching.

[@lucidmed3343]

Hi Janice! Thanks for reaching out. I'm so sorry to hear you've gone through this. I'm happy to answer any questions you or your doctor might have about the therapy if they decide you might benefit and everything lines up. Please feel free to email me directly at [e-mail]. Danielle

[@kelviannaepperson3677]

I found out mine was caused my MTHFR heterozygous gene mutations and vitamin B6 toxicity. I have to take methylfolate and I just had a baby and I found a prenatal/postnatal vitamin that has it that is more affordable than the medication I was on. After extensive blood test and skin biopsy

[@lucidmed3343]

Hi Kelvianna! First congrats on your new bundle of joy!! Thank you for this suggestion as well. Excellent info. Danielle

[@dudejoyce]

What are the changes you could see?

[@brendabrenner2891]

Im long covid,long Lyme, celiac, gut dysbiosis, was pre med..10 drs here are gaslighting me, tests come outnormal , bcuz in Ri we don't have the hi tech machines w fluroesrnce to FIND my me/cfs..trained 25 years ago, no clue 🙏♥️

[@JackMyersPhotography]

If you’re going to get IVIG, and you had a history of migraine, be sure to have a low infusion rate, over more days. Then Advil and Tylenol will be your friend as good as Ubrelvy. Nurses want to infuse as fast as they can. If you can, great. But it wasn’t pretty at the beginning for me. So slower is better to avoid headaches, migraines, and neck pain. As soon as you can, your medical staff will know, I recommend ditching prednisone pre-medication “IF you can” during IVIG. Considering you could be on IVIG for years, less prednisone is better. Fight your insurance company, they’ll make you justify it, often.

[@lucidmed3343]

Hi Jack! Thanks for commenting and you’re absolutely correct. Top infusion rates for Ig can be around 250ml/hr. If you experience headaches ask your nurse to titrate slowly and top your rate around 120ml/hr.

[@JackMyersPhotography]

@@lucidmed3343 That getting off pre-med prednisone really helped the headaches for me, too. BTW, in regards to SFN pain. Ultimately, IVIG made me so sick over the four years of use that I had to get off it. So I got a second from Johns Hopkins, and we found I had SFN/ASFN and not as diagnosed CIDP (or it was cured?). My diagnosis was idiopathic via a sural nerve biopsy. I never had a day of nerve pain until I was off IVIG. Then, I knew what folks were talking about. I'm on a careful diet that avoids inflammatory foods, and no processed stuff, etc, so it helps. I don't take anything for the pain, so mine must be moderate. But my point of all this is, IVIG definitely blocked the pain of neuropathy - SFN and or CIDP, however, I had no life. I couldn't work or function on IVIG over time. It made me tired, ill, and listless. So I'm glad to be off it, but the levels of pain and numbness have been an adjustment. But I think clearly now, and I've got the energy and will to work again. I suppose IVIG is different for everyone. I'll stay off it as long as I can.

[@speedysmoke]

Agree. In the beginning the insurance I had at the time approved the nurse but not the meds (I get home infusions) go figure 🤦‍♀️ thankfully my neuro is a bulldog

[@JackMyersPhotography]

@@speedysmoke insurance companies are really terrible about okaying IVIG. Thank goodness you had somebody who was willing to fight for you. I’m glad things worked out because I can’t imagine how terrible it must be for people who it does not work out for. That is an injustice that no one should have to endure. On a related note, I remember seeing that several companies are working on a synthetic version of IVIG, so that it can be produced in larger quantities. It’s a sadness that Americans especially need so much immune support. It certainly speaks to something we’re doing wrong, probably in our diet.

[@HookedOnFaith]

IVIG can have a lot of side effects for some people and not a ton of studies have been proven effective yet on the IVIG according to Dr. K Farhad at MGH in Boston. He’s one of top neurologists for SFN who works with Dr. Anne Oaklander & Dr. P. Novak… In my case, I also have terrible migraines, IVIG can tend to aggravate migraines too..infection can happen at port site, other conditions can arise if the person has other underlying conditions that they are unaware of… So there is a bunch of things to consider before getting into IVIG!! More people suffer afterwards than do well, from my experience with who I know personally and the blogs I belong to. I myself suffer immensely EVERY SINGLE DAY but I am in no way going to take a chance of getting worse!!!! I also have (h-eds ) so my heart and lungs are affected too… I found out from genetic testing that my SFN is genetic not autoimmune… They believe it came out when I got a flu vaccine (trauma to the body they said), something I hadn’t done in many years! For some reason, I decided to get a stupid flu shot and bam, out came this illness!!!! I was told at MGH after the ~vid🦠came out, all of a sudden, people started complaining about this exact painful nerve condition SFN and other mysterious “autoimmune” conditions!! Things that Make you go HMMM🤔 🤨

[@andreamueller1674]

I need help!

[@lucidmed3343]

Hi Andrea! Please email me at [e-mail]. I'll be happy to see if I can assist in some fashion. Danielle

[@josearce4436]

Gabapentin,800mg..neueopaphy peripheral.😮😢

[@josearce4436]

Perpheral neuropathy? The same?..😮😢😮😮

[@lucidmed3343]

Hi Jose! Small fiber is a type of peripheral neuropathy. I've attached the links to 2 other videos where I covered both. If you have additional questions please feel free to email me directly at [e-mail]. Peripheral Neuropathy: kzbin.info/www/bejne/iYi5mKR5Zcqbfq8si=uxLtj34dRbkQEq7S Small Fiber Neuropathy: kzbin.info/www/bejne/pGKzZJZ8eaqWgLssi=hMgwk8u96PxVKiil Danielle

[@ValgerdurLisaGestsdottir]

Hér er taugasjúkdómnum sem ég er með vel lýst.

[@lucidmed3343]

halló, takk fyrir athugasemdina! Danielle