[Synnove]

I have a question:

I had EMG and NCS of all extremeties yesterday, all positive for long and small fiber neuropathy.
Then the neurologist ordered 17 different blood tests. One was Anti-Hu Antibodies. I do not understandthis test.

any suggestions?
Thanks

[mrsD]

This explains:
http://www.aruplab.com/guides/ug/tests/0051090.jsp

Some PN is due to hidden cancers, which secrete various antibodies and peptides. PN of this type is called paraneoplastic PN. It is not really common, but it does happen.

[Synnove]

thank you Mrs. D
Ireas up a little regarding paraneoplastic syndrome. I guess, if there is Anti-Hu antibodies, then it gives the doctor something to focus on for further testing. I am wondering if it has anything to do with the fact that there were 2 small nodules on my ct scan of lungs?
I guess , it is a process of elimination.
These nodules did not seem to bother the pulmonologists.
I did not discuss the blood test with the doctor, because he just enters the orders, and I only see the print out. I made sure to make a copy, so I can find out. I have to wait. All these test will take 10 - 12 days to result.
Thanks for the link

[hopeful]

I think ordering the Anti-Hu testing is standard with PN. My doctor ordered it when I first saw him and a few times in the first few years. I hope it all works out for you!

[glenntaj]

--an anti-Hu panel is standard among neurologists who actually know about potential causes of neuropathy, as would be tests for antibodies to peripheral nerve (anti-sulfatide, anti-MAG, anti-GQ1, anti-GM, etc.)

The Latov/Quest clinical application paper has a list of these:

http://www.questdiagnostics.com/test...ripheralNeurop

[Synnove]

glenntaj, thank you for the link to the the Quest list. That is just what I needed. Had not found any link like that.

Thanks again.

[tarheel15]

Hello. I am a 32 year old physician (radiologist) and am seeking advice on neuropathic symptoms which developed immediately after a flu vaccine in Oct 2012. I have had progressive burning pain involving upper/lower extremities, face, scalp and ears. I also developed tinnitus and sharp/stabbing pains in the pelvis. I have had an extensive negative neurologic/immunologic/rheumatologic workup. Negative labs (including all the labs listed on the Quest diagnostics site posted by Glenntaj), negative imaging (MRI of brain and total spine), negative EMGs and normal Therapath skin punch biopsies.
I was completely healthy prior to the vaccine. The neurologists I have seen at Duke feel that this is certainly a post-vaccine polyneuropathy, likely small fiber. My skin biopsy tests showed normal ENFD and normal sweat glands.

Currently, I am taking 900 mg neurontin (I don't think this helps much at all), 10 mg Lexapro (anxiety due to this condition) and 0.5 mg Ativan at bedtime to help sleep. Supplements include Vitamin D 5000 IU, Vitamin B12 (methylcobalamin) 1000 mcg, Acetyl-l-Carnitine 500 mg QD. I honestly don't like to take prescription meds but the pain is unbearable at times. The sharp stabbing pains in my pelvis (rectal and pubic regions) are often debilitating. I've even had GI and urology workups (including colonoscopy and CT scans of the abdomen and pelvis) all of which came back normal. No one can seem to figure this out and tie it all together. This has been very frustating - I am trying to work a near full time schedule. The constant pain with insomnia etc.. has lead to depression and anxiety. Often times I feel hopeless despite being a very spiritual person otherwise.
Any support/suggestions/advice would be greatly appreciated. Please note that most physicians have never heard of small fiber neuropathy. Thanks.

[mrsD]

If you have damage to the dorsal root ganglia, from the vaccine (the adjuvants in it most likely), or a contaminant in it...(it happens), it might be there that the damage is. It takes a while for the skin biopsy to reflect that.

There is a special MRI to visualize the dorsal roots:
http://neurotalk.psychcentral.com/thread147771.html
This link has more information.

I assume you had B12 tested? And it is above 400pg/ml?

Have you tried some magnesium? It can be low in many Americans. Magnesium is a NMDA receptor antagonist, and blocks pain signals. Some people find magnesium fixes many many symptoms of PN.
http://neurotalk.psychcentral.com/thread1138.html

Do you have swelling anywhere? Swelling that comes and goes?

Do you take any RX drugs besides what you mentioned? Drug induced lupus will not show up in ANA testing.

You won't like this, but continued use of benzodiazepines, will lead to more pain. This happens as the last dose wears off. They are inhibitory for certain GABA receptors, and lower the threshold for pain briefly over time. So what works well at first, becomes less effective, over time, and leads to higher doses, then habituation, then a terrible painful withdrawal. Short term, yes, it is seductive. Long term = things get much much worse.

Vaccine injuries are very difficult to prove. But they do happen.
Sometimes they fade over time. But the medical community is not much interested in them, or in preventing them, or helping them. That is just the way it is these days.

See if you can pass on the next vaccine if possible. But with hospitals mandating them now for employees, that might become difficult.

[tarheel15]

mrsD - thank you kindly for your response.
Yes I had my B12 level tested twice - both times around 485 pg/ml.
I am still taking sublingual methylcobalamin 1000 mcg and folic acid daily.
I will look into the special MRI you mentioned to visualized the dorsal root ganglia.
I do not experience any swelling.
I am trying very hard to get off the 0.5 mg of Ativan I take at bedtime. I am trying herbal teas etc.. as a substitute. I do not want to be on any rx medication if I can avoid it.
I do take Magnesium Taurate 200 mg with dinner. I haven't noticed any effects from it.
As an FYI - I am very sensitive to medications in general. I am lucky if I can tolerate a new med. We went through so many meds when this all started (Lyrica, Prednisone, Ambien, Restoril, Vistaril, Elavil) none of which I could tolerate for various reasons. I cannot take anticholinergics at all.

I am meeting with my neurologist (neuromuscular specialist) next Tuesday - he wants to recheck all my IgG and IgM antibodies for Guillan-Barre that were all negative back in November 2012. Anything else worth asking about or checking while I'm there?

Also how do you make a new post on this forum and send a private message to a user?

Thanks!

[mrsD]

You may need more magnesium. Labeling for elemental magnesium is spotty, with some supplements showing total weight of both the taurate and magnesium. Others will give the elemental amount.

In general a chelate like taurate or malate, will be a very large pill or capsule. If it is not, then you are not getting much magnesium in that form. A 1000mg magnesium malate pill is HUGE (and has 150mg of mag in it only)... and I recall the mag taurate I had years ago was quite small.

So one has to be very careful in reading labels of some minerals, as some are very misleading or confusing. You would then think you are getting "more" than you really are.

A B12 in the 400pg range is very marginal. 400pg is the new cut off now. I'd take 5mg a day on an empty stomach for 3 months...then get retested. Stop it 7 days before the test. We keep ours on PN here, over 1000. You could also get a MMA test to see if that reflects activity... a low MMA is desirable.
If your folate is not methylfolate, I'd switch to that. Folic acid has to be methylated to work.

Did you see this new video? New this week for our forum, and recently made in Jan 2013.
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

You may need more methylB12 than you are taking. MethylB12 is the cofactor in making melatonin from serotonin. Sometimes when people have trouble sleeping, it is because this is failing.
Try some melatonin at night...say 3mg and see if that helps.


Also take that magnesium at night...it seems to work better that way. I use a topical at night now, and it puts me to sleep very quickly. I apply it along the wrists and inner arms were the blood vessels are close to the surface. I am still using the CVS lotion that I stockpiled before they discontinued it. But there is a body lotion called Epsom-IT which is very similar if not identical in ingredients. (the Epsom IT foot version has fragrance added which I like to avoid).

You would have to taper a bit on that Ativan.. if you can, if you have had it a long time. Otherwise there will be a surge of pain for a short time (hopefully).

I am getting over a crisis of acquired angioedema from an ACE inhibitor (lisinopril), and when it happened I had pain you wouldn't believe!
Swelling body parts, inflamed bladder, burning eyes, tongue to mention a few sites...etc.
I had rash too..which my doctor thought was drug induced lupus..and that is fading, but slowly. Now my doctor is considering HAE for me, hereditary angioedema...which my history suggests, that I had all along! So nothing really is safe, you know!

On page 1 of this forum in the upper left is "New Thread" ...just click on that to make a new thread. Private messages are blocked for new members for a short time, but open up after you have made a few posts. Just keep posting a bit and then try the PM function. Click on anyone's name on the pages here, and a list of options comes up, and you click Private message. Rarely some do not enable it, but most posters here do.
You can click on Private Messages, under your name, when you log in and a left hand list appears for you to send.