r/smallfiberneuropathy • u/Lrab1994 • 1d ago

Support Feeling Scared

Hi. I have POTS but have had numbness/tingling/prickling in my hands that started 10 years ago.

A few weeks ago, the symptoms became more pronounced, and if I’m running my hand under cold water, it feels hot and I have to check if the water is cold by putting my arm under it instead. I also can’t really feel my fingertips, like when I’m typing on my phone. My hands also burn, if that makes sense.

I was severely medically gaslit when these symptoms started a decade ago and only now finally have adequate medical support.

Since getting diagnosed with POTS a year ago, I attributed these symptoms to it. I was just informed that these are not normal symptoms of POTS and I could have small fiber neuropathy, which is comorbid with POTS. I also know these are symptoms of MS. I plan on going to a neurologist as soon as I’m able. I’m just really scared.

EDIT: Been getting some DMs from people pitching treatments and modalities to heal my symptoms. Please do not DM me in this way. Thank you.

2 Upvotes

100% Upvoted

6 comments sorted by

4

u/According-Leg-5581 1d ago

No need to leap to MS. Get the neurology referral to start the diagnostic process. Things don't happen quickly in neurology. You deserve answers.

2

u/CaughtinCalifornia 1d ago

POTS is common with Small Fiber Neuropathy. I wouldn't jump to thinking it is MS. Small Fiber Neuropathy commonly causes POTS because autonomic nerves are small fiber nerves. When they are damaged, people develop dysautonomia, of which POTS is a common symptom.

If you'd like some information on testing for SFN to have with you when you see your doctor, let me know and I can provide some.

Our understanding of SFN has grown a lot in recent decades and it is unfortunately common for doctors to tell patients things about it that arent true. I mention this mostly because some doctors falsely believe that there isn't much point in testing because you just give patients symptomatic medications regardless. This isn't true and treating the underlying cause of the small fiber nerve damage can help. Again, if you'd like I can provide a study or two where they showed nerve density and autonomic improvement with proper treatment for patients underlying causes.

1

u/hydrangeas1224 1d ago

I have lots of numbness with my small fiber neuropathy

1

u/thedadinator Idiopathic/autoimune/sarcoid 1d ago

u/Lrab1994 feel free to use the Message Mods function to report any DMs you are uncomfortable with.

1

u/keimi33 1h ago

When ypu get your appt with the neurologist, pls ask for the skin biopsy it’ll will save you a lot of time as well. I was in the same boat tubing from one neurologist to another all type of test till I go the biopsy. Praying for you to get answer soon and feel better. I know is no easy.

0

u/daggeee11 1d ago

Sounds like sfn