small fiber neuropathy

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    Intravenous immunoglobulin therapy for small fiber neuropathy: study protocol for a randomized controlled trial (de Greef et al.,2016)

    Small fiber neuropathy is the most common cause of neuropathic pain in peripheral neuropathies, with a minimum prevalence of 53/100,000. Patients experience excruciating pain, and currently available anti-neuropathic and other pain drugs do not relieve the pain substantially. Several open-label studies have suggested an immunological basis in small fiber neuropathy and have reported efficacy of treatment with intravenous immunoglobulin. Therefore, immunological mechanisms conceivably may play a role in small fiber neuropathy. To date, no randomized controlled study with intravenous immunoglobulin in patients with small fiber neuropathy has been performed.

    #EMWarriors #Erythromelalgia #SmallFiberNeuropathy #ChronicPain #SFN


    Something worked for me, please read on

    I had BMS for a good 20+ years. I questioned my general dentist, periodontist, oral surgeon, pcp,
    endocrinologist, and anyone else who I could ask if they knew anything about it.

    I my case, it only affected the left sideof my mouth, lips, tongue and upper palate. Right to the midline. Odd.

    I was told by different medical professionals that it was psychological, it was due to a combination of the medications that I was on, it was food intolerances and more. I tried " miracle mouthwash" and .05 mg clonazepam 3 x day. No change.

    I eliminated different foods and food groups for weeks at a time. Nothing.

    Sometimes wearing my bite guard during the day would lessen it, but only a bit.

    As I was in the process of getting diagnosed for a genetic disease, I had reason to see Neuromuscular Speciaist/Neurologist/Psychiatrist (all one physician) at Mass General in Boston. Along with being diagnosed with Mitochondrial disease (muscle biopsy then Genetic testing) I was also diagnosed with small fiber neuropathy (skin biopsy) and autonomic dysfunction (lots of tests).

    I figured that this is the person who can help me with BMS! He discusses things with colleagues at Mass General and other Boston hospitals. He trialed me on Gabapentin and Lyrica but they really affect my mood. Trialed some Parkinsons drugs (off label, I don't have Parkinsons). Finally landed on a drug called Pramipexole (another Parkinsons drug). My pain went from a 10 to a 1 with some time and dosage adjustment, if I have any at all.

    Your mileage may vary. Be well!
    My Neurologist- Dr. Michael Bowley
    Mass General Hospital

    #BMS #SmallFiberNeuropathy #neuromuscular #mouthpain

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    What media has helped you in your journey with Ehlers-Danlos syndrome?

    Living with EDS often means that we have to become experts on our condition. There aren't a lot of resources out there on EDS and the conditions commonly associated with it. While we are able to learn from each other and discuss our experiences in communities like the one here on The Mighty, it's easy to feel pretty lonely and lost while dealing with a rare condition.

    So, Mighty zebras, we want to know what books, TV shows, movies, YouTube videos, TikToks, podcasts, video games, or any other type of media has taught you about EDS or made you feel seen and less alone. What do you wish you had read, seen, heard, or played right after you were diagnosed (or on your diagnostic journey)?

    Your answer may be used in a Mighty story!

    #EhlersDanlosSyndrome #EDS #POTS #Gastroparesis #MCAS #Hypermobility #hypermobilityspectrumdisorder #SmallFiberNeuropathy #Migraine #CheckInWithMe


    Can’t ACCESS treatment!

    The only available treatment for my 16 year long battle with a secondary autoimmune neuropathy is unfortunately inaccessible to me due to:

    - insurance not willing add it to its coverage guidelines yet

    - out of pocket cost being $9.7k/infusion.

    According to my doctor, I need these infusions for at least 12 months to start.

    This is what medical exclusivity looks like.

    I live every day with neuropathy burning me from the inside out, which is quite literally hell and I cannot access treatment.

    #AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #treatment #Disability #Accessibility #access


    Internal Hell: Burning from the inside out. A story to remind you to never give up and never give in until you get answers.

    It’s been hell, literally, inside my body as I’ve been burning from the inside out for just over half my life now.

    For nearly 16 years I was brushed off as a liar, a psychosomatic case, an anxious or depressed individual, that I’m too young and must be making up my symptoms.

    What could amyome possibly have to gain by faking their illness?

    To me, I lost everything! I had to change my career right after I graduated. I had been bedridden for 8 out of 15 years. I had a small child and was a single parent who didn’t have family to help.

    I’d seen over 100 doctors in the last decade alone. Most of them say, “you’re a young woman of child bearing age, it’s obviously just anxiety.”

    We’ve gone through the diagnostic odyssey of Lyme (equivocal), EBV (reactivated) which took 5 years of my life, genetic testing, doctors did all the same ANA and CMP and thyroid tests over, and over, and over again and they were almost always within normal limits.

    I’ve been told I just needed to excersize more despite my intolerance to it due to POTS, frequent falls and constant dizziness with syncope. My heart rate jumps 100 points on almost a daily basis.

    I’ve been told it’s all in my head by Mayo Clinic who refused a formal written request for further testing, even after they diagnosed me with Ehlers Danlos Syndrome and confirmed Medullary Sponge Kidney Disease.

    I found out that due to this autonomic dysfunction, I have a second degree heart block which has been symptomatic at rest and when standing. My heart randomly decides to reset which is on a whole other level of scary. My heart rate gets down to the 30s and up in the 190s.

    Finally, I pushed for a different type of testing with a new neurological specialist. The golden standard of a biopsy for small fiber neuropathy.

    Then took the results to a neuromuscular specialist and said what’s causing this? They took my blood and sent in for a WASHU panel and after patiently waiting 6-8 weeks it came back positive for two antibodies.

    My TS-HDS was 80,000 and my Histone H3 was 2,100.

    TS-HDS is an autoimmune heparin antibody and depending on the person it can have very different effects and bind to the blood vessels and even parts of the autonomic nervous system. It gets activated by anything that can set off the immune system. Childhood sicknesses make me bedridden for a week without a warning or even a sniffle.

    Histone H3 is an antibody related to an ataxic gait syndrome that normally affects those ages 65+. Now I know why I have such difficulty walking. It’s so bad that I have opted for a power wheelchair that I use now because I move like a sloth and it’s painful.

    It’s given my back my mobility in a way I never thought I’d have again. But honestly; the best part is validation.

    I finally have answers and proof that this is very real and not just anxiety. Sure, I had some anxiety in not knowing what was wrong. Any person who cares about their daily functional capacity being reduced with no answers would, in my opinion.

    But this is different, this is on paper and real. I’m currently waiting for insurance approval for IVIG therapy. The neuromuscular doctor thinks it may help.

    I wanted to share my story because it’s been hell. Physically and mentally. It’s draining and exhausting when you’re already exhausted. I know it. I’ve been there. I’m still there.

    You have to be your own advocate. You can research potential conditions and request that your doctor rule them out.

    Just know, that there is hope. One day you will get answers so don’t give up, please, hang in there. They say there has to be a storm before the rainbow appears.

    #AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #Advocacy #AutonomicDysfunction #Heartblock #EhlersDanlosSyndrome


    Appointment fails

    I'm fed up today both with appointment cancellations and myself. The last 2 doctors appointments I made were cancelled and I have to reschedule, and apparently I slept through one that I either forgot or was spontaneous. I just would cry but I don't think I can at the moment. But I feel... disgusted I think. I don't have it in me to keep making the phone calls, and now I've completely missed one. My chronic pain and fatigue sure leave me feeling hopeless and irresponsible. And I'm like a masterpiece of a crumbling body. Take care of one physical problem at a time, and sometimes I don't even get help with that. In the meantime a dozen more physical things crop up or worsen. I just want a gentle hug right now, even if it feels awkward to admit somehow. #EhlersDanlosSociety #SmallFiberNeuropathy #Fibromyalgia



    Today is just another day of being too sleepy to contribute to helping anybody. It's just one of those time where life feels like I'm a taker but not a giver. I wish to be able to care for others, however my chronic pain and fatigue leave me hardly able to handle myself and my problems, let alone be able to care for others in any sense. I feel very stuck. I need my pain medication, but considering some of it is to help me sleep, and without it my brain has strange jolts, and other undiagnosed symptoms occur, it also means I struggle to function as well and have even more fatigue. One curse or another, not always a easy choice. I just want to be able to feel a purpose, to gain understanding and confidence in who I am. At time like these, my times of optimism feel like I was just indulging in a illusion of things being better than they really are. #EhlersDanlosSociety #SmallFiberNeuropathy #ChronicPain #ChronicFatigue

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    I’m starting IVIG next week, in the hospital - 5 days.
    I’m terrified.
    Not sure what to expect/fear/dread. #LivingWithPOTS #Dysautonomia #HypermobileTypeEDS #SmallFiberNeuropathy #Fibromyalgia #Stroke #DegenerativeDiscDisease #AutoimmuneDisease


    An annoying part about having multiple conditions is figuring out which one is causing a certain symptom "Am I super itchy all over because of allergies or small fiber neuropathy" #SmallFiberNeuropathy

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    How do I know if I have reached the point of needing a wheelchair?

    Hell, everyone. A little bit about me.. I have hypermobile ehlers-danlos syndrome (hEDS), POTS, small fiber neuropathy, fibromyalgia, Myalgic Encephalomyelitis, Hashimoto's disease, severe GI issues, and a litany of other conditions.


    I currently use a rollator walker with a seat pretty much every time I leave the house, but do not use it in my apartment because it's a small space, I need it less inside the house, and my apartment except for my partner's is not mobility aid accessible. I am on IV saline infusions for my POTS. I am noticing as I get older, my POTS gets worse, I may have good lungs but I always feel dizzy, lightheaded, weak and out of breath. I also am very prone to chronic pain and injury due to my hEDS especially from standing and walking longer distances.


    I am reaching the point where I am wondering if I need to get a wheelchair in the near future, but dealing with a lot of internalized ableism. Am I faking it? Am I being dramatic? Am I just lazy? How do I know when my health is bad enough to need it? With my weakness, dizziness, and severe fatigue from my CFS/ME and POTs combined with chronic pain, chronic injury, chronic stomach problems causing more weakness and fatigue and dehydration, and my rapidly declining neuropathy, I know I need help, but I do not know how much.


    I know I need to strengthen my muscles and I need to exercise, but the threshold between the right amount of exercise and over exertion is so so small because I can only do a tiny fraction the amount than the average joe.


    I also deal with paranoia that I will be harassed and hurt by strangers and doctors more because I would be an ambulatory (part time) wheelchair user as well as because I am plus size. When did you reach the point where you knew when you needed it? Has anyone needed it specifically struggling with hEDS, POTS, Small Fiber Neuropathy, or stomach problems? When did you know?


    #SmallFiberNeuropathy #PeripheralNeuropathy #EhlersDanlosSyndrome #EhlersDanlos #HypermobileEDS #HEDS #POTS #posturalorthostatictachycardia #Gastroparesis #IBS #CFSME #CFS #ME #hashimotos #Wheelchair #ambulatorywheelchair #MobilityAids