small fiber neuropathy

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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

36 people are talking about this
Community Voices

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

18 people are talking about this
Community Voices

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

3 people are talking about this
Community Voices

Purpose

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

2 people are talking about this
Community Voices

IVIG

<p>IVIG</p>
7 people are talking about this
Community Voices

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

4 people are talking about this
Community Voices

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

<p>How do I know if I have reached the point of needing a wheelchair?</p>
9 people are talking about this
Community Voices

Hello, I’m new to POTS, small fiber neuropathy & to The Mighty

#PosturalOrthostaticTachycardiaSyndrome #SmallFiberNeuropathy
Hello, I was diagnosed with POTS & SFN in September. I am hear to connect with others experiencing the same. I hope that you can share what has worked/hasn’t got you as I take this on. I am also looking for friendship with others who are in the same circumstance and understand the situation.

Community Voices

If you could teleport your bed anywhere in the world for a day, where would you go?

I’m sure we all wish we could be somewhere else sometimes. Maybe somewhere tropical 🌴, maybe to the Alps skiing our beds down a crystalline snowy mountaintop ❄️. Share a place you’d love to snap your fingers and be instantly there. Hope you are all having a wonderful Tuesday, Beddies! #ChronicIllness #TheMighty #ChronicDepression #ChronicPain #Disability #PeripheralNeuropathy #SmallFiberNeuropathy #BackPain #ChronicHeadaches #Gastroparesis #TheDisabledLife #Neuropathy #Anxiety #Depression #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue

21 people are talking about this
Community Voices

The last day I felt normal.

<p>The last day I felt normal.</p>
2 people are talking about this