Arm tingling, tremors and 4 x elevated GM1 antibody? Should I get a second opinion or do nothing?

[elise18]

I recently went and saw a neurologist because I was having pins and needles and a tremor in my left hand for the last 6 months (and some other symptoms).  He sent me for an MRI and told me that he couldn't find anything wrong with me. Nerve Conductions studies and MRI were normal.  Rang neurologist (who is filling in for the one I saw) back the other day for the results on the ANA and it turns out that my IgM is double and my GM1 antibody is four times normal.  I told him that the chiropractor told me my shoulder muscle is tight which explains my arm symptoms - he just told me that it makes sense.  Don't have to go back and see him.  So am I just to assume that a very high GM1 is just normal for me, or that it is due to inflammation, or should I find myself another neurologist to check for demyelinating conditions?

Can an elevated GM1 ever be normal for an individual???

[ecarol]

A related discussion, GBS to CIDP was started.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
    I think that your positive test for GM1 antibody may explain your symptoms.  This antibody is elevated in a condition called multifocal motor neuropathy (MMN).  This can cause weakness and sensory disturbance.  It is treated with IVIG, or with drugs such as cytoxan.  I would suggest that you make a follow-up appointment with your neurologist to determine the next step in your diagnosis/treatment.
I hope this has been helpful.

[elise18]

Thanks, will ask my neurologist about sensory CIDP when I see him in four weeks.  Unfortunately I live in Australia so my choice of neurologists is very limited.  I am not bad enough for IVIG at the moment and Rituxan obviously won't be available over here for at least a decade.  At the moment I am about to start on amitriptyline for the pain in my arms (was on sodium valproate) and I am also considering taking B12. Because my neuro exam, MRI and nerve conductions studies are normal he doesn't seem concerned.  However, I am convinced that my strength and coordination is not what it used to be.  I was a black belt in martial arts yet now I find myself overbalancing and dropping things all the time.  I also find I get twitches in my arms and legs at night when I am trying to sleep and sometimes I feel my body swaying back and forward when I am sitting down.  It just doesn't add up - I tried to convice myself it was all psychological 18 months ago but then all my blood test results got flagged when I donated blood and my symptoms are slowly getting worse.  Please let me know if you have any ideas of medications I could suggest to my neurologist?

Thanks

[Quixotic1]

A word here.  A high IgM is NOT the same as a high GM1.  The first is an elevated of the type of antibody made in first repsonse to something - IgM.  The second one GM1 is a type of antibody made against against a compenent of nerves called gangliodisides.  The antibody is "anti-ganglioside Type 1" is the clue here that you are missing

There is a grouping of demyelinating neuropathies that this result points at or suggests:  The most common one is called Multifocal Motor Neuropathy and the second is Chronic Inflammatory Denyelinating Polyneuropathy.  In the category of the CIDP there are many variants including one called Sensory CIDP. In the quote below, note that sensory CIDP is felt to be TREATABLE. People with purely sensory CIDP may go undiagnosed or treated as hyposchondriacs.  Many neurologists remain unaware of the vast ways in which CIDP can show up.Here is a quote from a journal article:
****************************
"Unfortunately, because of the lack of clarity with regard to diagnostic criteria for CIDP, many patients remain untreated. In addition, certain CIDP variants may also respond to treatment. These include sensory CIDP, multifocal motor neuropathy (MMN) with or without conduction block, multifocal acquired demyelinating sensory and motor (MADSAM) neuropathy, distal acquired demyelinating sensory (DADS) neuropathy, and multifocal acquired sensory and motor (MASAM) neuropathy."  
****************************
The point here is that it is important that the diagnosis be made because some of these devastating neuropathies CAN BE TREATED!!!!

Here is a link to start reading about this.:

http://www.cidpusa.org/sensorycidp.html

You need to find a neurologist with expertise in CIDP.  The neuro you saw isn't such an expert. I would recommend contacting your closest academic medical center or comeplace like the Cleveland Clinic.  

Quix

[mike1105]

elevated IgM IS MGUS.

[elise18]

Well I did some research on MGUS and figured that I don't have it because I am negative for paraproteins in both blood and urine.  I just have an elevated 2 x normal IgM and 4 times normal GM1 IgM antibodies.

[elise18]

Ok - now I am a bit confused.  Now a high IGM is know as MGUS - right?  I also have a four times elevated IgM GM1 antibody.  I am negative for paraproteins.  What actual conditions are you talking about because according to the neurologist I don't have CIDP, multifocal motor neuropathy, motor neurone disease, MS etc.

[mike1105]

elise-- i too have sensory symptoms only. do some research on IgM MGUS. there are instances where it can produce sensory symptoms only. It all depends on which antigens are present in the myelin of your nerve fibers. the treatment that was recommended to me is Rituxan. I am holding off for now but I am seeing a neurologist at the Mayo next moth (they are running a study on IgM neuropathies and Rituxan) to discuss it.

[mike1105]

elise. there are certain IgM antigens that if you are positive for them will produce sensory neuropathy only.  research it on the web. that is what i have... i have no muscular weakness at all. There is a drug therapy-- Rituxan--which will kill off B cells that make IgM. when the B cell level regenerates, the new B cells are not "bad ones" supposely and do not pump out IgM wildly.. I am holding off as long as I can but at some point I will probably give the Rituxan a shot.

[elise18]

Well, went to the neurologist today.  Apparently I do not actually fit in with any particular disorder (like you) because I do not have limb weakness only sensory symptoms.  He just told me to wait and see what happens and they will do repeat nerve conduction studies in 6 months or so.  Back to the physio for me it seems.

[elise18]

No problem.

[rcs2]

I have sensory symptoms, the correct medical term for them is "paresthesia", if you google it you will see they can show up in several ways (numbness, pain, pins and needles, tingling, etc). Basically abnormal sensations.

It started on my face (left side), than my scalp (also left side). For these sites there were definitive nerve damage (almost sure), because I have the symptoms all the time for over 2 years now, most likely will never improve. Now I have it all over my face and scalp, both sides.

I also have paresthesias on my arms, hands, legs, feet and sometimes my belly. As you can see, most of my body is affected (only my back and my torax were never affected). Also, when my scalp/face symptoms are really bad I think I have cognitive deficit, although it could be due to the stress of having the spell...

To be honest with you, although I don't have any positive result for any of the exams I've done, it seems that things are pointing to MS. When you are a young female it's the dx that keeps coming to the neuro's mind.

[rcs2]

sorry for asking how to post here... I don't know why I thought this was the heart forum (have been trying to post there for a while). If u look up I have a post here!! LOL... know I wonder if my brain is working OK... Sorry!

[mike1105]

rcs-- what are ALL of your symptoms??  just arm stiffness??

[rcs2]

Thanks for explaining your symptoms.
I my case I have a variety of sensory symptoms, sometimes stiff L-arm and L-lef, but couldn't tell if there was lost of strenght, and all my clinical exams are ok.
I was tested for ANA last Friday (didn't hear from doctor yet). Have anybody mentioned Lupus? Also, were you tested for Lyme disease?
Sorry you don't have an answer yet, it's quite frustrating...
Good luck

[kjohri]

Hi,
I have had similar symptoms as Elise. Tingling in my left hand. MRI was good, Nerve conduction tests revealed ulnar nerve was slower than normal. Doctor was quick to diagnose CTS which I am not totally convinced.
My Vitamin B12 level is 290 which is on the lower side (normal level is 220 to 660)
Apart from these, I have tremors in both my hands. Has anyone experienced tremors.
Please share! Thanks,

KJ

[rcs2]

would you mind sharing more details about your symptoms? You said that beside those you mentioned there are others.
I also am having non-specific neuro symptoms, and will ask to be tested for ANA levels and MGUS after reading your post. I am seeing a neuro, but if it turns out I have high levels of ANA I would see a  rheumatologist, just in case.
Also, do you have any tip about posting on this forum? (sorry for asking). I have tried but wasn't luck.
Thanks and good luck,

[elise18]

18 months ago I noticed that I was more clumsy than normal and was dropping things quite often.  As well as this I found myself having difficulty expressing what I wanted to say, I got double vision from time to time, and I was was choking sometimes on my saliva when I wasn't eating.  At the time I was however working full time and studying full time so I put it all down to tiredness.  Most of the symptoms resolved (except for the mild clubsiness).

In November I started getting tingling and pain in my L) arm and mild tingling in my R) arm but as I had had ulnar nerve surgery I thought it was a problem with my ulnar nerves slipping out of the grove again.  I got a referral to my arm surgeon.  Then over a few months developed a tremor in my L) arm only when raising my shoulder (ie drinking out of a cup).  The arm surgeon referred me to a neurologist.  The double vision and speech problems came back and the clumbsiness got worse - I also notice that I consistently drop things and have difficulties with my fine motor coordination.  The arm tingling and pain gradually got worse to the point that it keeps me up some nights.

Meanwhile the blood bank flagged me for a persistently elevated IgM over the past 18 months so I went and saw the GP.  The neurologist found that I had a normal neuro exam (reflexes intact) and my brain and spine MRI were normal.  He told me that he thought everything was fine but sent off an ANA.  The ANA came back GM-1 Igm Antibioties 4297 (should be less than 1200).  The subnote from the pathology states 'Anti-ganglioside GM1 IgM antibiodies are found in 50% of patients with multifocal motor neuropathy with conduction block, up to 20% of patients with chronic inflammatory demyelinating polyradiculoneropathy and occasional in motor neurone disease).

Meanwhile the GP has put me on sodium valproate to help with the pins and needles and arm pain.  So at this stage I suppose I just have to wait and see what happens - unless anybody has any ideas.  I just wish diagnosis was as easy as a standard blood test.

[mike1105]

elise--- i have a similar condition...... a high IgM (MGUS). I also have some peripheral neuropathy-- I've seen a gentleman at the Mayo Clinic in Minnesota for this problem. His name is Stephen Russell and he is in the hematology department. It is a difficult diagnosis becasue there is no way to 'prove" that a neuropathy is due to the IgM. (the statistic I read is that roughly 1/3 of patients with IgM MGUS develop neuropathy of some sort). It's basiclly a default diagnosis when no other explanation is found, and even then you should keep in mind that  neuropathy sometimes occurs with no explainable reason. Coincidentally, I also had shoulder and neck problems from my career as a dentist, and it was explained to me that more than likely it had nothing to do with elevated antibodies. they were right-- with proper stretching, exercise, and posture control I was able to fix that problem on my own. Myofascial issues or individual nerve compression syndromes can also cause casue tingling and numbness so my advice to you would be to do all you can to get your body in shape before pursuing your antibody levels as a cause of your symptoms. The unfortunate part of it all is that other than medictions to control the neropathy (I use lyrica/cymbalta-- which i do not believe is doing anything !!) there is really no known therapy for MGUS.... There are trials going on using the drug Rituxan, but to get accepted into that trial one's symptoms need to be significantly bad--ie involving physical disabilities/motor neuropathy. I tried to get into the study with just sensory symptoms (motor wise I am fine) but they said no and that it wasnt even worth a trip to be evaluated. One CAN get the drug "off study" but it is very expensive and insurance will ikely not cover it as it is still considered "experimental" although it "should" help I've been told.. It is a powerful drug that kills B-vcells which make the antibodies. As an aside I will tell you that from my reading I would say that it it seems to me to be unsual to have a systemic problem affect only one limb---this would point me in the direction of myofascial issues or specific nerve impingement. My neuropathy is in both hands and both feet--- sharp quick needle like pains. You have alot of reading to do. Hope this is helpful. I'd recommend the MAYO (Minnesota is by far the best) and Dr. Russell in a heartbeat if your sympotms persist or worsen. When problems and a diagnosis get complex, places like the Cleveland Clinic (Cleveland) and the Mayo (minnesota) are the best places in the world. BTW-- MGUS is usually NOT treated and usually does not
cause symptoms and usually will not affect longevity.

[elise18]

mike1105 thanks so much for your help.  I am going to a physio at the moment due to shortening and oedema in the muscles down my left arm and behind my shoulder blade both sides - according to her the tremor (L hand only) and pins and needles (both hands but R) is mild) is all consistent which is why I stopped worrying until the blood tests came back. So I will take your advice and continue with my physio and strength building exercises. I live in Australia so unfortuantely there aren't many clinical trials or treatments anyway, but at the moment I seem to manage okay with my symptoms and it is more the fear of the future that worries me.  Incidently I do find that I tend to drop things quite often and do have intermittent problems with double vision and balance but these only happen when i am tired and the neurologist doesn't seem concerned.  I have to follow up with a haematologist in two weeks and hopefully that will be the end of it for a while.  Thanks again