Diagnosed on 50th birthday- Newbie
 

Hi. I am new to your forum, although I have been reading the posts for some time now. You see, I was quite sure that "something" was wrong as I have been experiencing pain, numbness, weakness & tingling in my upper extremities since 1996. It all started in 2 fingers, on my right hand and over the years has spread to both upper extremities, to include the fingers, hands, and arms up to the shoulder. I actually saw a neuro back in 1996 but went home empty handed. Saw another neuro about 2 years later but again was told nothing was wrong with me. So, I have endured this discomfort for the past 14 years. Finally got mad, saw a new neuro and told him I needed him to be "my hero" and keep looking until we found an answer, no giving up!! After 3 MRI's, evoked potentials, 14 vials of blood and an EMG/NCS we have a diagnosis: mixed axonal and demyelinating peripheral polyneuropathy. Finally validated on my 50th birthday!! Part of me feels happy because I feel vindicated, I have my "I told you so" moment. Another part of me is apprehensive because I don't have a clue as to what the future holds. Looking to you experts for wisdom and advice. I have seen a lot of good information shared on this forum and hope you can enlighten and encourage me. Feel free to ask any questions that might help you, help me!! God bless.....

Just wanted to let you know that I am new here too. I don't have much advice but there are a lot of members here that are wise, caring and are going through something similar. Although, you probably already know that. I have been helped tremendously here, if only for communicating about how I feel. I am sure my Husband is tired of hearing about it, although he doesn't complain.

I have been suffering for about 20 years and am in the process of getting a diagnosis/prognosis. My emg/conduction showed a small amount of demyelation in the left leg. I have had a skin biopsy and labwork and go back mid-February for the results. Like you, I have been ill for a long time. My neurologist suspects autonomic and peripheral neuropathy. But who knows, maybe it will take more time to find a diagnosis.

Please let me know (if you don't mind), what is your prognosis and what is the plan of treatment? Even though I don't have a concrete diagnosis, my neurologist prescribed alpha-lipoic acid and l-carnatine (sorry for the spelling - it's not as good as it used to be).

I know you might feel scared and depressed... but at least you know what it is now... and you can focus on the positives. I hope you feel better. Mere

I was only told that it was "idiopathic". Not sure where to go from here. Was given Neurontin 300mg to take at bedtime and an appointment to come back in March. Not much to go on. Thanks for the reply.

You are so right, Mere. At least I have a name for this monster. Now I want to open a can of "whoop *****" on it!! For the time being, I am taking 300 mg of Neurontin at bedtime and I have a follow-up appt in March. Not much to go on...that is why I am here.......because the experts are here!:D

Welcome and I admire your research and courage as I do others..
 

Such as Mere. It's hard to be 'new' but simply being honest and curious and willing to do your own research [we can't do it all?] is all it needs. We are here because we WERE where you are NOW.
KP? And Mere? Do you have any copies of those tests done? The highlights or comments can be soo enlightening to you and can help US understand what's going on.
I once was new here, and reluctant to let others know too much about me? I still am in some ways. But, bits of info you feed us, help us check out sources we've gotten good at finding 'things' at! I've faith that both of you will give us info that can help us help you! Even tho we don't diagnose nor doe we treat!
In the meantime, keep yourselves glued together with HOPE and faith in yourselves! You have to have the latter to keep on going! I KNOW from experience!
Hugs and hope always! :hug::hug::hug::hug:'s to you all!

From a previous post: My (Mere) neurologist has ordered lab work including,

2 hour glucose tolerance test,
methylmalonic acid, CK, Vit.D (25 hydroxy total), ANA, ESR, FTA, Lyme Western blot, comp. metabolic panel, CBC, SPEP w/immunofixation, SSA, SSB, Vit. E, cANCA, pANCA, ACE level, RF, antiribonucleoprotein, cryogloblins, anti ScI 70, copper.

I have already had numerous studies for thyroid dysfunction and the results are normal. I did work in a manufacturing atmosphere for 25 years, so yes, I have been exposed to chemicals. I can however place a finger on these problems occuring after the monoclonal pneumonia 20 years ago. At that time, I had terrible dyautonomia starting with tachycardia, etc. It did improve somewhat but then returned with terrible occurances in June and September of last year. On both occasions, I had numbness and tingling in my hands, feet and mouth. It eventually left except for the left hand and occurs elsewhere periodically.

My neurologist has advised me to take alphalipoic acid 600 mg and carnitine, 1000 mg (bid).

I should have results of the lab studies and the skin biopsies mid February.

Mere--
 

--just one comment on your test list--ask if they're going to do quantitiative immunoglobulins with that immunofixation electrophoresis (SPEP). Often they're done together, but not always. (Given your monoclonal history, it may be important to see the amounts of immunoglobulins present as well as their characteristics.)

And kpRN--welcome, and I have similar questions, since "mixed axonal and demyelinating peripheral neuropathy" that is idiopathic is more a description of what's happening, diagnostically speaking, than a cause. You're losing myelin sheathing from your larger nerves and this is also resulting in secondary damage to the underlying nerve fibers, but apparently there's no idea what's causing this. Given that this began in your upper extremities, one wonders about autoimmune possibilites, or mechanical ones, such as some variation of Thoracic Outlet syndrome or a brachial plexopathy (did they do any imaging of your neck and shoulder areas
?).

Tell us what test results you have--if you haven't gotten copies of them from the docs, get them. (We're pretty good with them.) And also, if you want, the Liza Jane spreadsheets are really good for tracking results over time, and suggesting future testing to doctors--these were designed to be as comprehensive a testing protocol for neural symptoms as we could come up with:

www.lizajane.org

I took a look at the lizajane spreadsheet. WOW. It is all there. How great that is...