If not MS, what could this be?

I am a healthy and fit 49 year old Asian man. In March 2010, I developed pins and needles on my left leg and that progressed to my right leg and both trunks over a period of 8 months. Now I have constant prickly, burning and insect crawling sensation with muscle twitching all over my body. I also have occasional numbness in my left and right pinky and ring figures in my sleep, but goes away as soon as woke up. Within the last nine months, I was seen by three neurologists, I have had various neurological exams and blood tests, 3 MRIs on brain and cervical, 2 MRIs on lumber/sacral, 2 EMGs/NCSs, 1 EEG and 1 SSEP and Lumber Puncture. All the results came back negative/normal, except for O Bands restricted to CSF in LP. But my Neuro absolutely dismissed MS theory as my symptom does not follow  Mcdonald criteria and there is no demyelination. The following is his response.

"The oligoclonal bands are not specific to MS, and can occur for quite a long time after certain viral infections, for example, which is what I think is likely in your case. I think you will need to consider CBT if you remain anxious beyond the next few weeks"

I feel that my symptoms are getting worse and I am very anxious. If this is not MS, what could this be?

[Sumanadevii]

If you are still worried it may be MS, I would try to assure it you isn't acting like it.  MS does not usually involve the entire body.  You have had all the tests run and some more than once.  There is always an outside chance because everyone experiences MS differently that lesions have just not shown but even then it would be unusual.

While anxiety sounds so simple, it could possibly be the cause.  Are you or have you ever used medications for it?  You might be surprised at how they can calm a physical symptom.  I have MS and sometimes I become over reactive to the pain.  I take anxiety meds during those times and honestly, the pain level goes down very quickly.  So, it is my reaction to the pain not the pain itself.  You might give it a try and see what happens.

I wish the best to you.

[addicted2harleys]

Hello, Bala-

I am so sorry that you are experiencing these symtoms (symptoms).  No matter what the cause, it can be frustrating and scary to have your body doing things that are abnormal to you.  

It does seem that all or some of the neuros you have seen have done all of the appropriate testing, as far as MS is concerned.  And, o-bands can show up with other diseases besides MS, i just can't remember any of them right now.   I am sorry for that.  But, maybe one of the other members will jump in and can help in that category.  All neuro exams you have had, all of them don't show any abnormalities?

All of your symptoms fall into the sensory category.  While MS can and does effect this, it generally effects more than just sensory.  With MS, symptoms like numb fingers do not go away when woken up, as in your case.

Viral infections can and do cause symptoms that you are complaining of....when it gets in your neurological system.  I have heard of it anyway.  And it can stay in your system for quite a long time.  If this is what your neuro suspects, is he going to do anything as treatment or care for it?  Has he done anything as far as symptom management for you?

I also wonder if you have seen a rheumatologist?  The deal with the autoimmune system.  They might be beneficial for you.  

There is also the mental health option, too.  Please look at this with an open mind.  Let me tell you that many, many people on this forum are taking anti anxiety and/or antidepressant meds.  It is not because we are all crazy or anything.  :)   It is oh so common for people with chronic diseases, disorders and/or symptoms that become anxious and/or depressed due to this.  Of course, there are also people who get symptoms due to anxiety/depression.  Either way, it is a good thing to remain open minded and check into this as it makes life easier if you deal with it.  Of course, it could turn out that your mental health is not involved.  If this happens to be the case with you, at least you have ruled it out.

I also want to guide you to our Health Pages.  The link is located in the upper righthand corner of the page.  There is a wealth of information there, including many of the diseases and disorders that mimic MS.  I urge you to take into consideration that you very well may not have MS.  This would be a very good thing!  I know I would much rather find that I have a treatable or curable disease or disorder than to have MS....whose treatment is invasive and which has no cure.  

Anyways, again I am sorry that you are going through this traumatic situation.  I also welcome you to our forum.  We are a fairly large group of compassionate and knowledgeable members from all over the world.  Maybe others will be able to add on their opinion and help.  Just please know that, with the exception of one, we are not doctors.    Feel free to post any other questions you may have, too.

Hang in there, hun,
Addi

[essdipity]

Hi.

I see that you have posted essentially the same things on MedHelp many times. One of your several responses was from me.

I do wonder why you won't keep an open mind about whether your symptoms are caused by emotions, especially anxiety. If that's at the root cause, there is good help available to you. That's much better than having a neurological illness, truly.

Please do look further into this. If you can eliminate such problems, then other diagnoses can be pursued.

Good luck.

ess

[carrie235]

Have you been checked for Lyme Disease.  I thought I had MS for a year and found out a few months ago I have Lyme Disease.  You need to see an LLMD though (Lyme Literate MD).  I had some of same symptoms as you and after starting treatment my symptoms have gone away.  I do get a few flairs now and then with tingling, but that is normal while being treated.

If I were you, I would check-in over on the Lyme Disease forum.  There is a lady there (JackieCalifornia) that is very knowledgeable and can help lead you in the right direction.

I only get on this forum periodically to see if there are people like you who don't know where to turn next.  I've been in your shoes.  I've had every test in the book for MS.  I do have 20 lesions on my brain, but not typical for MS and I was seen at UCSF and they say, no, this is not MS.

Anyway, come over to the lyme forum for a while.  This might be the culprit!  Also, if you've already been tested by a regular lab for lyme and it came back negative, that does not mean you don't have lyme.  Lyme doctors use a specialized lab called Igenex.  They test differently to look for bits of bacteria or dna from the bacteria.  

Carrie

[addicted2harleys]

After reading what ess wrote and feeling silly for not noticing this myself, I went to Bala's personal page and checked out his other posts.  I did find that he has posted a few other times with the same issues.

But....lol....there is always a but!

I also found a post from Bala in the neurology forum.  In this post he goes into more detail on what his MRI's have shown.  While they were not consistent with MS, they did clearly state several dehydrated discs in his back.  

Me, not knowing what this was and never hearing of it, did a quick search.  Dehydrated discs mean Degenerative Disc Disease.  I didn't know that.

Anyway, I read up on it here:  http://www.backpainexpert.co.uk/DehydratedDiscs.html

It clearly states the symptoms that Bala is complaining of with MRI to back it up.

So, Bala....are you aware of this??  Please go check out the link.  This seems to be exactly what is going on with you....which means NO MS!

Addi

[LisaJF]

Um ok.  I'm speechless.

[Bala71261]

Hi guys,

I am amazed at the number of prompt and positive responses to my health concern. I am really overwhelmed and grateful to the people in this Forum who care.

As Ess suggested, I was going down the route of having severe anxiety until the latest Neurologist found O Bands in CSF. That threw me a bit. Addi mentioned that I did not have any other symptoms except sensory, which is true. After having these symptoms for over nine months, perhaps I should have been convinced that if this is something sinister, other symptoms would have shown up by now.  Until now no blurring of vision, no problem with mobility and balance, no muscle weakness and tightness, no cognitive issues, no bladder or bowel problems,  normal reflexes etc. etc.

Perhaps it’s time that I start listening to the experts.

Many thanks for your advice.

Bala

[Sparkysarah]

It sounds as if you are listening to the support that you have now been offered and are open to considering what has been discussed with you. I think that Addi has also goone out of her way to find out more for you in her last post and this sound like it is well worth following up.
Be overjoyed that you do not have MS - no-one wants this progressive MiSerable condition.

Best wishes

Sarah