Newly Diagnosed - Small Fiber/Large Fiber Neuropathy! Please Help!
 

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!

Welcome Josh!
 

There are a heap of folks here who have experienced and are experiencing what you are going through! It can be totally scary, no doubt about it.
First off? I suggest that you read a lot of prior posts, I'm sure you will find situations or circumstances you can relate to.
Secondly? Take a good look at the 'Stickies' at the top of the forum.... They are called 'stickies' because they are KEEPERS. Some reference sites are gone? But try clicking on any web site hilited in BLUE and it'll turn on a new screen [IF it's available]. The same goes for any posts in threads....click on the blue and you should get some new info to help you understand what is going on...how this stuff is diagnosed, and how it can be treated.
It sounds like your doc is trying....the meds he/she's prescribed are normal for starters, as are the doses.
As for the PAIN? Each of us is different, and many have strong or specific opinions about it all. Only YOU can assess and determine whether what you are on is working. You likely have other medical issues as well, most of us do? And, we get 'new' issues as time goes on. It's an adventure? DUH?
Do take a good look at ALL the medications you are on by webbing up the 'prescribing information' for each one. Then see where you mite be best not taking one w/another? Mrs D, both here and in the 'medications forum' is a super resource about these things ...but you'd best do your homework first!
Yes!!!! This all hurts!!! A lot. Pain meds such as neurontin and others can help to a degree? But, I've found they only skim the top of it all. Most meds that cut more than 20% of my pain also make my brain foggy! It is a trade off you have to consider and key to that is getting a good diagnosis! Learn as much as you can from here...which will lead you to other sources, and then go ASK your Neuro some solidly fact-based questions. Don't be afraid to ask about any numbness/burning progressions and not just about how it HURTS? But about how it's affecting your life and ability to get around! There are times when you shouldn't be hesitant to hold back about how this affects your life! I truly wish you a lot of good luck and hope that things improve and soon! :hug:'s - j

Welcome, Joshua.
 

And you're right--small-fiber neuropathy cannot be found/eliminated by nerve conduction or needle EMG studies, which can only meaure the gross activity of the larger myelinated nerves. But, Quantitative Sensory Testing IS designed to provide measures of small-fiber nerve responsivity, by noting if you one can percieve temperature differences, and warm/cold induced pain--the small, unmyelinated fibers are the ones that sense pain and temperature.

It's certainly possible for one to have damage to both the smaller and larger fibers simultaneously, and that would point to a more global, systemic origin of the neuropathy--has there been any serological/urinary testing? And, if there's a neurosurgery consult coming up, does that imply that someone thinks this is related to spinal problems? Have MRI's been done? Problems with the spine/nerve roots can have symptoms that exactly mimic those of more distal nerve problems, and narrowing down the spots is not always easy . . .

As I often do, I'm going to refer you to the Liza Jane spreadsheets, which list all the tests for nerve related problems that many of us could think of--and they're great for tracking test results over time, or suggesting further ones to doctors:

www.lizajane.org

Hello, Josh. Welcome to our PN forum.

Can you tell us a bit more about yourself? How old are you?
Occupation. What drugs have you used recently?
What tests have you had? Did you have B12 and Vit D tested yet?
What was the numerical result of the B12?

Do you have any involvement in the hands yet?

Dealing with PN is like being a detective. One needs patience and keeping an open mind. Doctors vary in their abilities to do this, and financially, it can be draining depending on your insurance.

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.

When a really young person comes here, with no triggers, no toxins, no diabetes risk, etc...I have to wonder about
hereditary types of PN. Charcot Marie Tooth, is one type.

Also I wonder about vaccines. Have you had vaccines before the
symptoms started? Vaccines can set off a cascade of inflammation which affects the nervous system.

One form of food poisoning...by Campylobacter, can also affect the nerves. This can come from poorly cooked chicken.
I believe that there are some seafood toxins as well.

No, no family history what so ever! When you have an EMG what shows up? What does your reports suggest? I understand that you said it's different in everyone, do you have to have foot drop?

I'm pretty sure I have absent reflexes in my hands as well. So far it's idiopathic, he said we must look at rare occurrences. How is your CMT handled and treated? How did they find it in your case?

I have not had any immunizations other than a flu shot in 4 years. The flu shot I got after all this has been discovered as well.

peripheral neuropathy
 

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

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

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!

Wow!
 

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?

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

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