NeuroTalk Support Groups - Newly Diagnosed - Small Fiber/Large Fiber Neuropathy! Please Help!

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Newly Diagnosed - Small Fiber/Large Fiber Neuropathy! Please Help! (https://www.neurotalk.org/peripheral-neuropathy/107695-newly-diagnosed-fiber-fiber-neuropathy-please-help.html)

I think just about anyone here as well as future members would be interested in information about the Neuropathy Treatment Centers of America.

Quote:

Originally Posted by mgerandc (Post 588557)

Joshua,

I am a member of the Neuropathy Treatment Centers of America, a group of doctors who treat pn symptoms. This care is not for everyone, but it can be a big help in dealing with the symptoms of pn, even if it means slowing down the progression of the symptoms. I see that you are in Indy. If so, i think there are a couple of doctors in that area. I actually am in South Carolina, but I thought I'd share this with you. If you are interested in getting their info, reply to this post.

Good Luck.

Mike

Of course I am interested! Thank you so much, how do they treat? What are the specialties? This is great news to me as my neuro isn't very aggressive, and is taking this with a slow speed!

Can you imagine having this conversation with the typical neuro? The 10 minutes you are allotted with the physician can feel so intimidating. The wealth of knowledge that is available on this forum is outstanding. I hope you can gain the information needed to help you find a diagnosis and treatment for your pain. I truly feel for you at such a young age. I wish you the very best!

Mike is a visitor, not a member, and may not have PM privileges.
I PM'ed him to ask if he'd post more info,
but am not sure he'll get it.
I'd try to email him (but you may have to PM a 'moderator' to get the addy), if possible, as he hasn't been back to answer.
(Hopefully this wasn't a way to advertise a commercial venture, as that's not allowed here)

I moved an appointment up from Jan 4th to Nov 23rd. My pain is getting worse and the burning is spreading to my hands : (

I also feel SO dizzy upon standing, especially from lying down and I feel like falling over with my eyes closed.

I feel like I'm losing it. The pain is so bad that I get anxious and scared. I'm just SO miserable and lost. I feel like a different person, I don't feel like myself anymore and I have absolutely no social life, I can barely get out and go to work...

Joshua,
Has Mike responded to you?

Quote:

Originally Posted by JoshuaY46012 (Post 588015)

Hi Guys,

This is my first post, I am new to the forum! I decided to sign up considering I've been newly diagnosed as of last week and I am so lost!

I'm in constant pain, burning, lacerating, electrical pains. I was diagnosed with Small Fiber Neuropathy and Large Fiber as well in both legs.

I was diagnosed with Small Fiber with the use of an EMG/NCV. I was told that it wasn't possible to diagnose SFN with an EMG? I had absent latency in the plantar sensory nerves in the bottom of both feet. I'm seeing a Neurosurgeon so I would assume he knows what he's doing!? Anyone else diagnosed this way? I have a Quantitative Sensory Exam as well with the pin-prick and feather too.

How do you guys deal with your pain? I'm currently taking 600 mg of Neurontin 3x a day, 50 mg of Ultram 4x a day and 0.5 mg of Ativan once daily as needed.

My doctor seems to think my cause is Idiopathic, he hasn't found any reasons as of late, he says all we can do as of now is treat the symptoms?

Thanks so much,
My name is Josh, I'm sure I'll be a continuing member here!

Hi Josh - I havbe been suffering with first small fiber neuropathy and now involvement of large fiber - I am in constant pain - feet - legs and everything from waist down. Muscle aching, nerve pain, burning. Must have had 4 EMG and autonomic testing and been on every med. We must hang in ONE DAY AT A TIME - getting thru each day as best we can and when we have to rest, we have to rest. Stay with a good neurologist and hopefully - they will find a med that works for you. Good luck. LindaW

Quote:

Originally Posted by JoshuaY46012 (Post 588155)

Thank you SO much for all the help, I've been dealing with the pain for quite some time and it's gradually gotten worse.

I'm only 21, I work in a Health and Fitness Center at the service/billing desk, I don't drink, I don't smoke, I don't use any recreational drugs, I do take my medicine, Neurontin, Ultram and Ativan. I've had both tested, I know the B12 was 1,000 or so, and the Vit D was normal. I've had ANA, CBC, TSH, RA Factor, IFE Protein Test (?) and a few others I can't think of, I've had an Evoked Response (SSEP), Brain MRI, Cervical MRI, Lumbar Xray which were all normal

My hands occasionally burn, not like the feet. The electrical pains I do have in the hands and arms, I do drop stuff A LOT! I'm seeing a Neurosurgeon, not because of the spinal column, but because he also deal with Neuro. patients with other complications and he seemed like a good idea.

Now with the EMG/NCV it showed NO response on the "Medial Plantar Sensory Nerves" on the bottom of my feet, the doctor said those indicated Small Fiber, if those had no response is it because they're "dead" and is that a pointer to SFN? This is all just so confusing.

Any update? How do you feel now? Did you get a proper diagnosis?