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...

The Rx of 300mg Neurontin at bedtime is probably just to acclimate your body to the med. & see if there are any side effects.
At that minimum dosage, I don't see how it can in any way
affect your symptoms or even touch the pain.
It may help you sleep better, though.
Until you are on a daily regimen of neurontin that keeps a minimum of 1800-2400mgs a day 24/7, in regular intervals of say,
400-600mgs 4xday - I would not expect to see any help.
I was on 4200mgs/day of Neurontin for over 6 yrs when I switched to Lyrica, and am now on 200mgs of Lyrica 3xday along with
a pain killer(Tramadol/Ultram).

[QUOTE=glenntaj;611053]--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:



Hi glenntaj: Hope this finds you having a "as good a day as possible." I appreciate you taking the time to respond and try to help me out. I have recently had a slew of tests, just now getting all of the bills.......yikes. I took the time to fill out the spreadsheet and was wondering if there is a way to attach the pages so that you can see what all of the test results showed? In answer to your question, I did have an MRI of the cervical area which showed "moderate disc narrowing at C5-C6 and C-6-C7 with posterior osteophyte formation at both, most pronounced at C5-C6." "No specific etiology for bilateral upper extremity parasthesias." Also had the thoracic spine done which was "negative." I also have thought about TOS, but as I am now experiencing issues with the legs and feet, have more or less given up on that. I just have so many questions.....do I exercise even though it hurts, do I need to make changes in my diet? Sometimes my skin is so hypersensitive that I can't stand to be touched. This is really hard for some people to understand because I don't "look sick." I have periods of remission for which I praise God, and then it comes back. I can see that the periods of remission are far shorter than the periods in which I am at my worst. I guess I need to find a specialist for PN because the neuro pretty much diagnosed it and booted me out the door. Tell me what you know and if you need more info, ask away. I am not trying to hide anything, I just don't know what all I need to share.:confused: Another weird symptom....when I exercise, the numbness & tingling is threefold. As I walk outside to my car, w/in a few minutes of being in the cold, it is much better. Is that typical?

Thanks dahlek. My life is an open book, if you need additional info....ask away. The impression on the EMG/NCS says: The above EMG/NCS reveal electrical evidence of a mixed axonal and demyelinating peripheral polyneuropathy. There was no electrical evidence of superimposed cervical / lumbosacral polyradiculopathy, myopathy or mononeuritis multiplex.

In reading through the lengthy report, it is mentioned several times that the "F" wave latency is absent. (R. ulnar,R. median, L. median, R.post-tibial, right peroneal and left peroneal) Also the right and left sural sensory terminal latency is absent.

The strange thing is that up until this test was completed, the diagnosis from the neuro was "mononeuritis multiplex."

My ACE level was elevated in the blood work and there was some concern about sarcoidosis. I was sent for a chest x-ray to rule that out and the result was a normal chest x-ray. My arsenic level was high initially, the repeat was within normal limits. Other heavy metals were normal. My ESR was slightly high at 23 with the normal range being 0-20. B12 was 521 and Folate was 13.9

Not sure what else is critical to share so that you can help with this puzzle. I am more than willing to roll my sleeves up and get my hands dirty in a search for answers. I appreciate any help I can get from my new friends and do believe that there is strength in numbers. I also believe that what doesn't kill me will make me stronger. Looking forward to hearing from you and anyone else with wisdom to share.:icon_smile:

nide44: You are 100% correct. The neurontin has helped me to sleep, although the first night I got up to go to the bathroom and was EXTREMELY dizzy. After that, not so bad. Just trying to hold off on any additional meds until I can't stand it anymore, maybe that is the wrong approach?

Hmn.
 

From the other test results you just reported, you seem to be undergoing at least some degree of inflammatory process. That, combined with the idea that you're feeling symptoms beyond your arms, and that the cervical MRI did not show a definite spinal cord compression or foraminal narrowing/nerve root compression (lost of disc height and osteophytic--bone spur--formation in the spine is very common as we age) would probably indicate that some sort of cervical spine/nerve root problem is not a primary generator of the symptoms.

Your B12 level and folate level are a bit lower than most of us would be comfortable with, even if the range is "normal" (and a lot of us think the ranges, especailly for B12, are set too low in the US compared with Europe/Japan)--are you taking any kind of supplementation now?

I'm specifically wondering about that elevated ACE level--neurosarcoidosis, though rare, can present as granulomas of the nerve tissue even without presence in the respiratory tract:

http://neuromuscular.wustl.edu/antib...op.htm#sarcoid

Feel free to tell us all you are comfortable with (and you can use private messaging if there are things you don't want the "public" to see).

I think just a chest Xray is not enough. Sarcoidosis can occur anywhere in the body.

You also have to get a firm diagnosis...because Vit D is contraindicated with sarcoidosis. If you get a test run and you are high without using supplements, that would be indicative too.

I've always had an mildly elevated ESR, but it never panned out with further autoimmune testing. Some people just have this, in the mild form. ( I have osteoarthritis, and my doctor thinks this is what raises the ESR).

Since you have periods of remission, I'd explore a viral cause.
The Herpes viruses do this, activate and sleep. You can have blood work showing antibody titres... and if high, perhaps a trial of antiviral will help you. You CAN have shingles pain, without vesicles. This virus activates in the presence of arginine, so if you consume high arginine foods, without balancing with lysine, you can activate Herpes.
http://www.herpes.com/Nutrition.shtml

Try some lysine daily ...starting at about 2 grams, and see what happens for you. If you start feeling better within a week, that would point you to viral testing. The Herpes family of viruses are very sneaky...hard to identify when they activate sometimes.

I am going to try and upload my files from the spreadsheet so you can spot something that I should have included. Don't know if this will work but will try.

For some reason it is indicating an invalid file. Don't know if the file is too big or what. I have tried to send each page separately but again not sure why it won't allow. Any suggestions? As always, thanks a million and hope you are having as good of a day as possible. (Sorry....I had to remove your URL link in order to be able to reply but I have saved it and will check it out.)

Thank you for the valuable information contained here. I have tried to download my copy of the spreadsheet but for some reason, I am unable to do so. Says it is an invalid file. Any suggestions? I want to provide you with as much info as I can. Again, thanks. (I also think I have some component of arthritis. When we are expecting rain, I can tell before the weather man announces it!! Bone pain like none other!! ) Sorry, I had to delete your url in order to reply but I have copied it and will read on it shortly.

I think you have to have a spreadsheet program on your computer to download that site.
Hubby says OpenOffice.org has free.
He has it on his laptop. (he says it is a large program, takes a while to load).

I have never been able to get it either on this machine.

Shoot. :thud:That would have made things so much easier. It is a wonderful spreadsheet......contains so much valuable information. If you can think of anything else, test wise, let me know and I will forward the results.

Might try copy & paste into a word document since that is one of the allowed documents. Never hurts to try.:winky:

Well, I did copy to a word document but now just one page is too large, exceeds the file allowable size. I am not a quitter, I will find a way to get the info to you if I have to copy and paste sections.

I tried just copying a section of the page and it is still too large of a file. Since I am at work, looks like I will have to quit until I find another way. Have a good day.

My husband says you can download OpenOffice.org for FREE.

Then you may be able to open that spreadsheet. ;)

Sarcoidosis
 

Am I correct in thinking that the skin biopsy for PN includes testing for sarcoidosis? I am sure that it includes amyloidosis and inflammation.

Here is the link for the testing lab where my biopsy was sent:

http://www.therapath.com/Overview.php

Mere.

To my knowledge--
 

--they can look for the granulomas of sarcoid in the small-fiber nerves from a skin biopsy, and parts of the sample can be stained with Congo Red to look for signs of coiled amyloid proteins. But this probably has to be specifically requested by the doctor involved; I don't think it's automatic with the electron microscopy.

In my case, we went back to look for amyloid in the preserved samples from my first skin biopsy some months after it was first analyzed--negative, fortunately.

Mrs. D....I might be a little confused. I am able to open the spreadsheet from LizzyJane and have completed it with all of the info that is available to me at this time. However, the problem is trying to attach the spreadsheet to a post so that you can see the pages of the spreadsheet. It says that the spreadsheet is too large for what is allowed on this forum. When I get a little time, I will go through and send you what labs and other tests I have had done so you can look through it and advise me, if you have the time and feel up to doing it. I know you help a lot of people, God bless you for that.

The neuro that diagnosed me is pretty much done with me or so I get the feeling. He never gave me a diagnosis, I got it from the report once I requested a copy. I think I need to push on and find a doctor that specializes in this area. I just think if I went back to the neuro and asked him to do a bunch of tests, he would boot me out the door!!

Praise God that your samples were negative for sarcoidosis. That must have been a huge relief!!

Mere....thanks for the link. I have never had a skin biopsy done and I don't think my current neuro would even order one. Will have to look for someone in my area that specializes in PN to get to the bottom of this. Have a good one!!

kpRN,
If you tell us your 'area', someone here
may be able to help you find a good neuro.

We do have size limits here. I misunderstood.
I am not an expert on lab results. My thing is DRUGS and vitamins etc. Glenn would know more about the testing than I do.;)

Good Afternoon, Nide44: I am currently living in Indianapolis, IN.

My name's Bob B
(if you look closely at the bottom if my posts)
We'll try to hook you up somewhere.
Remember, you can travel a bit for your neuro. After the initial testing phase, you only see a neuro once or twice a year. I haven't seen mine in almost 2 yrs.
Having a good PCP that coordinates with your neuro is the key.

f I remember correctly, the Jack Miller Center for Peripheral Neuropathy
is somewhere near you? University of Chicago, I think.
But geography wasn't one of my best subjects.
I go to Johns Hopkins in Baltimore.

Nice to meet you, Bob B. My name is Kathy. Will look into the Jack Miller Center. Chicago is about 3 hrs from here. I do have a wonderful PCP. I am scheduled to see him in a couple of weeks. My world will be shattered when he retires!!:(