More ideas

doesn't hurt to see an infectious disease dr.
hep b-c tests
liver enzymes
lyme test

Copper/ceruloplasm/zinc
iron/ferritin
ANA
heavy metal panel

YoungSFN - you are not alone in the being young thing - I am 22 and had my first symptoms at 19. I would say my symptoms are more sporadic and mild compared to many of the people on this forum but even so my doc has diagnosed as SFN. I would def. keep pushing for the skin biopsy - mine did not come back entirely abnormal but did have significant reduction is sweat gland nerve fiber density which led to a QSART test which showed similar results. Hope you can find your answers - not knowing can be so hard.

To YoungSFN, Boiler and Other Young People,

I am deeply saddened young people are still so affected early in their lives.
I had started with neuropathy symptoms at 21 y.o. I had participated in many years with researchers. I had hoped, all along, more would be known and there would be better interventions for the younger people by now. It's 30+ years later now.

There has been some progress, of course. We can be thankful for this.

Stay as positive as possible.

Have fun as often as possible.

Never give up!



DejaVu

I also had got a Tdap vaccine 4 months prior to my symptoms.

This goes to show how far back exposure to the pathogen can be from when symptoms begin. I think they can be so subtle at first that we didn't realize what was happening. It is so hard to figure out where you went, what virus you had, what you came in contact with. I keep wracking my brain to figure out what was it that set this in motion.

Northerngirl, when you look back, do you remember any first symptoms that were minor that you now know were related?

We have a member on this forum, Liftyourhands7, who received the adult pertussis vaccine, and has had full body PN ever since.

You can read her posts here:
http://neurotalk.psychcentral.com/member.php?u=37655

It took a while for her doctor to admit that the vaccine was most likely the cause, BTW.

Thanks for everyone's input!

I have a question for long time sufferers: how long have/did you have it? Has it gotten better or changed in any why? What has made it better?

And FYI:
I don't know about others but my tests have been pretty normal:

• Lyme - Negative (twice)
• ANA - 1:80 speckled (Normalish)
• Heavy Metals - Negative
• Sed Rate - Normal
• B12, Folic Acid, Magnesium - Normal
• TSH / T3 and T4 - Normal
• Brain and Thoracic Spine MRIs - Normal
• EMG / NCV - Minor Carpal Tunnel

This is a long term internet location for neuropathy... We have been here almost 10 yrs now. So using our search function would be helpful for you to find previous posters who have moved on.

Here is one thread as an example:
http://neurotalk.psychcentral.com/sh...opathy+improve

The software here does not support a search link from a second person to a thread for others to use. So you have to do your own search.

Yes my symptoms started very subtle, and because I was running 5 miles daily, in the gym a lot and very athletic, I thought at first they were just related to that. I casually mentioned it at my annual physical, and my doctor,told me to eat more bananas (potassium).
When my feet started feeling heavy and they were slapping the ground making it difficult to run, I knew something wasn't right and went to my first neurologist.
I spent so much time trying to figure out what it might have been that triggered the PN--but there's so much... my dad used to spray our home and camp lot with spray pesticides when I was a child, I was in the army reserves, and they make you have a lot of immunizations, stress. I had, had the Tdap.. ..then I just decided to focus on getting better and not worry about what may or may not have caused it.

Sorry it took so long for an update. I thought I was getting emails when people responded and I hadn't check back to the website in a while.

I'm sorry to hear there are so many other people out there who have experienced something like this. This is a great place for support and answers.

I've had some slow improvement in my symptoms over the past several months particularly. I'm not sure if this is a seasonal improvement with the warmer weather but I've noticed my symptoms are greatly reduced. I no longer have the buzzing in my feet that I used to have and the point numbness and parasthesia after walking seems to have completely cleared up now for weeks. Some of the sensations might also be habituated at this point and I'm just desensitized to them. Either way, my quality of life has gotten markedly better.

I've stopped taking some of the meds I was one before (alpha-lipoic acid, L-carnitine) and instead Im just taking B complex and Flaxseed oil tablet daily. I don't know if this is helping but it's likely not hurting at this point either.

I hadn't heard about others having reactions to the Tdap vaccine. When I brought up the fact I had one 4 months prior to my neurologist, he seemed pretty convinced that it couldn't have caused any of this. Knowing the small amt I know about immune response, it seemed unlikely to me for a rxn to be that delayed but maybe they are related.

I hope everyone out there is finding some improvement as I have. There were some dark times when all of this started and I feel like I've pulled the nose up and have hope for the future. Please feel free to private message me with any questions or if you just need someone to chat with.