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Non-Length Dependent Small Fiber Neuropathy
Neuropathy | Last Active: Apr 18 7:03pm | Replies (131)Comment receiving replies
I have read a lot of everyones stories. I have a question of everyone who was diagnosed with Idiopathic Small Nerve Fiber Neuropathy non-length dependent. I woke up one day with full on set of pin pricks all over including in my eyes. That was my beginning. I was right at the end of the 6 weeks from getting my two shots for Covid. I did some research and I read that If you were going to have a reaction to a vaccine that it would be within six weeks of getting it. Of course I have no way of verifying that it was the vaccine. I was tested for quite a few autoimmune diseases but I read you can have one and not know it. I read a lot about those but I knew I didn't have any symptoms of anything. Come March of 2023 it will be a year since I had those pin pricks show up. They now come and go whenever they chose to. The burning that started in the beginning in my left hand went away but has come back and it comes and goes. My Neurologist told me that it is rare for someone to wake up with pinpricks like I did. I of course am still struggling with the WHY and the HOW? I am still seeking any information I can get. In April of last year I woke up and had a funny feeling in my chest. It was my heart rate that was up. Testing confirmed it was as high as 183. So I started taking medicine for that. Then I noticed one day my heart rate was 97. I did another monitor for my heart and now I have the diagnosis of Paroxysmal Supraventricular Tachycardia. When I saw the heart Dr. who specializes in rhythm he said to me it is normal what you have. In my mind I didn't think it was normal and it kinda stopped my train of thought. I went home and looked it up and it says it can be normal in people. He is a great Dr. It was just me. I say what a coincidence that it has come up right after the pinpricks. I quit taking the beta blocker because it did not help my heart rate. I know that SNF can affect the autonomic nervous system. The heart thing is very scary to me. I have short bursts of high heart rate and don't know when it occurs. I know that if it were to be sustained I would be going to the ER. I have dealt with each thing as it has occurred as best I can. I know a lot of you have been dealing with SNF for years. I feel like the odd one out because of my symptoms and how it started. I occasionally have fasciculations. With idiopathic is there anyone who has had similar to what has happened to me? I know I am repeating myself. Sorry. I did try to get appt in Jacksonville Mayo. I was told they are all booked up. I tried Birmingham and I tried Texas Heart in Houston. No such luck. I am not giving up at all. As a retired nurse I realize that mostly it will be to treat whatever symptoms show up.
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Sadly, I agree that so many disorders and diseases end up being handled by treating the symptoms. I also agree that you can't give up and you have to really push hard on your healthcare providers as you advocate for testing or getting questions answered. I am fortunate that, so far, my Neuro wants to explore every option to see if we can find out the underlying cause to my NLD SFN. Good luck!
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Hi @rnlorena - I have had small fiber PN with just the numbness and some tingling for more than 20 years (almost 80 now). My heart rate also seems to jump around but not normally over the mid 90s unless I'm exercising. I have one of those Kardia mobile devices that I use for taking an EKG and was in a panic the first time it told me I had signs of AFib but really didn't feel any different than normal. It regularly shows my EKG as Sinus Rhythm with Supraventricular Ectopy or Supraventricular Tachycardia. Early on I showed it to my PCP and at first they were concerned but then after checking said it wasn't anything to be concerned with. The Kardia app does tell me the same thing that this can be present in healthy adults and in adults with heart conditions.
I do think it's worth getting it checked out. I know it can be difficult to get an appointment at Mayo due to the overwhelming number of patients seeking help during this current environment. Have you thought about checking at a Mayo Clinic Care Network location?
The Mayo Clinic Care Network is a select group of independent health care providers, carefully vetted by Mayo Clinic and granted special access to Mayo's clinical, educational, research and operational knowledge, expertise and resources. Here's a complete list of Network members with links to their websites:
– https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members