blood test for Anti-Hu Antibodies
 

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

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.

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

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!

Yes--
 

--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

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.

Small Fiber Neuropathy After Flu Vaccine? Advice Please
 

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.

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. :rolleyes:

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

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!

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! :rolleyes: 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.

Hi Mrs. D,
I have to say you come up with some great ideas. I wrote yesterday about buying magnesium, but I think I like what you do better. I won't have to spend money since I have a few bottles of the CVS lotion already. I will try on my wrists and inner arm also.
Thanks for this!


Hi Tarheel,
Welcome to NeuroTalk. I am so sorry this happened to you. I also had all the same symptoms as you in the beginning. I had all the same test and all were negative but the biopsy did show SFN. Then I got myself an appt at Hopkins and was told their biopsy was negative. That was confusing and a let down. Believe it or not I wanted it to be positive so I had something diagnosed.

I am also very sensitive to medications. I can not tolerate any of the anti-convulsants. I could not take Lyrica or any of the other most popular meds. Neurotin was not good for me at all. The other nurses in my office actually said Welcome Back to me after I stop taking it. What I did find that worked was Cymbalta. It works very well on my nerve pain. I have Hasimoto's so I do take Synthyroid. I do also take Tramadol. I refuse to take any heavy narcotics.

I know how hard it is to have a background in medicine and not be able to get any answers. I don't know about you but mind works on a cause and effect motto. I am not trying to tell you to stop trying to find an answer but if try not to get caught up in running from doctor to doctor.

I have had neuropathy symptoms since 2008. I have been all over trying to find an answer and I still don't have one. Try to focus on improving the symptoms. Once you get those under control you will feel better mentally and emotionallly also. The supplements advise offered here has helped me also. There are great, understanding and knowledgable people on this site.

I am very spiritual too. Keep your faith in the forefront. It helps me a lot. I wish you well! Hope you get the relief you need! Hopeful

Our Stories Are So Similar!
 

Tarheel... I read your post and had to print it to share with my family so they could say "Wow!" too. Sadly, our stories are so very similar. Truly, it's something unimaginable and unexplainable unless you've experienced it.
I received a flu shot in 10/11 and seven days later my symptoms began... severe tingling in both feet radiating up my lower legs, then tingling/paresthesia involving the entire left side of my body, including my face and scalp, and then encompassing my whole body in a matter of about six weeks. The tingling turned to intense burning, and includes my head, face, mouth, tongue, throat and inner ears. It brings tears to my eyes just writing it all out:( I have had most, if not all, of the diagnostic testing you have had, and it's all negative. In fact, I recently had a repeat of the punch skin biopsy and I thought for sure it would have to be positive this time (the 1st was so early on in the process), but the report says I have normal ENFD, too. So, I (along with my doctors) are stumped. Of course you never [I]want[I] to hear you have small fiber neuropathy, but at least it would validate what you live with already. So, that leads to a question to Mrs. D. regarding the dorsal root ganglia possibility.
Mrs. D., [B]thank you[B] for the time you take in sharing your in-depth knowledge of this... even to a physician! The suggestion to me by the neurologist has been "non-length dependent immune-mediated small fiber neuropathy." Is that consistent with a neurONopathy or an ischemic injury of the dorsal root ganglia? And wouldn't this type of neuropathy have to evidence itself with positive findings via nerve conduction studies? I am told, "But your nerve conduction studies are normal; your EMG is normal; your skin biopsy falls within range" etc. etc. Any insight is helpful as I turn to this web site so I can try to converse with my doctors. Unlike (maybe) Tarheel, I've had to spend some of my precious appointment time with doctors of every color trying to convince them I am a sane, stable person, though who wouldn't be anxious after experiencing something like this? And then, there's the million dollar question: Does this type of nerve injury EVER heal? Maybe I should start playing the lottery more often!
Also, Tarheel... ironically, I started on similar medication as you (gabapentin and Ativan to help me sleep). I was on Ativan for about two months and then realized my situation wasn't improving and the use of Ativan couldn't be long term. I did some research on-line and worried that I may only be compounding an already difficult situation by using it. Now, I'm up to about 2400 mg. gabapentin and 10 mg. Nortriptyline, though it really just takes the edge off things. I should add, it was only in retrospect and testing AFTER the flu shot that it was discovered I had a virus; so that, together with the flu shot, may have sparked this whole thing.
Hopefully, you will still visit this site and you will at least know this has happened to someone else, so it is entirely feasible, and conversing with others in the area of the inexplicable helps, too.
:grouphug:

Reply Post
 

Hi, Tarheel and Mrs. D. I posted an extensive post today and don't see it with this thread. It is posted on Today's posts, though.

I see it right above your post here.... at 11:03....

In fact you made two identical ones and Imoved the 11:10 one off.

You might have an overloaded cache in your browser, and it is showing you an older page? Do you know how to clear your
cache?

I'll quote your post here... It appears on this thread at 11:03am

Anyway here is a link to the new diagnosis of vaccine induced PN
due to the adjuvants...leading to inflammatory autoimmune PNs.
http://neurotalk.psychcentral.com/post989688-8.html

Followup
 

I wanted to post a followup to Mrs. D regarding my symptom course:
To refresh, I had a flu vaccine back in Oct 2012 followed by severe burning pain all over the body. My extensive neuro workup was normal including a normal therapath skin biopsy.

My sx slows improved with fluctuations up until June 2013 - I was off the Neurontin, Ativan and Lexapro. I continued on the B12, VitD, Acetyl-l-carnitine and Magnesium.

In June 2013 I had a very bad cold for 3 weeks after which all my sx came back even worse. I went back to the neurologist - all my labs, EMG etc.. again normal. Now I am suffering more than ever. I am trying to titrate up on the Neurontin again. I am taking 400 mg Mag Taurate per day. My b12 level is now 1200 and Vit D at 95. They tried me on Cymbalta 20mg for a day but I had severe somnolence/drugged feeling.

I would appreciate any thoughts? I am doing things like meditation etc.. to help. I really want to avoid rx meds if possible.
Are there any specialists out there who deal with these kinds of vaccine injuries? I am open to alternative medicine etc.. are there any dietary triggers?

Thank you.

Knoledge Needed
 

Hi All,

This is my first post on Nuro Talk so here goes;

My wife has been having a slew of weird abnormalities since April.
She feels very tired and lethargic at times. She gets leg pains if standing or doing activity or sometimes even just doing nothing.
Many doctors have no real diagnosis for her except for maybe some kind of Auto Immune disease etc...?

She had some blood test results done and some key results of hers;

B12 was 1154
Vitamin D was 25
Anti-Hu Antibody came back positive but; Western Blot after was negative

Now I know if western Blot is negative, then it was kind of like a flase positive but I am thinking;
Is there anything to be worried about?
Any more testing she should get done?
Any one with similar issues with a diagnosis?

Thank you so much everybody who will respond

atagsz it would be better if you put your post in its own topic so that more people will see it and reply.

Hi Echo's, thank you very much for your reply. When I first joined I didn't see where to do this but I rechecked just now from your idea and I see where I can now.
Will do in a few again thanks

Hello,
I realize your last post was in 2013 but I would be interested in discussing the progression of your neuropathy since then if you ever check this forum. Your story sound very similar to mine, and I wanted to know if they every checked anti-sulfatide antibodies for you? Also, just because you have a negative skin bx doesn't mean you don't have small fiber neuropathy. It's not an all or none test. Sometimes if you take a Bx sample that doesn't capture the diseased tissue, it comes back as a "false negative" but you wouldn't know that unless your doctors still have high suspicion that this is the underlying pathophysiology or unless you had a second Bx (though I wouldn't recommend it, since it really doesn't change your treatment options, but more so gives you a healthy attitude/mindset).

I've had many of the same tests as you, including the skin bx (which was negative). I started on neurontin but switched and tried 3 other medications (with no relief).

Hope to hear back!

-J