looking for answers

[Sherlyn]

3 months ago I started having a burning sensation on my tongue.  
I continue to have it every day.  I also at times have difficulty speaking, as if my tongue is not functioning or moving properly. It feels like I am having a hard time articulating words like when I say the word "ask" I can't get the "k" consonant sound.  This happens a few times a day when I am just leisurly talking.  My neck also feels a little fuller or tight when I have speaking difficulties.  My dr. checked my thryroid and did other tests including an MRI which came back negative.  She thinks that this is all in my mind and something I will probably just have to
live with.  I am 31 years old.  I have a mother and a sister with
MS and my grandmother died of ALS (bulbar onset).  I went to see
a neurologist and he assured me that I do not have ALS and did
just a general neuro exam.  He said that I am probably stressed
out and so I have these symptoms.  I feel so frustrated by this because I am not feeling overly stressed and I am generally a healthy person.  I have only gone to the doctor to have babies in
the last 10 years.  I know ALS would be rare in my case, but I can't
seem to stop entertaining the possiblity since it is in my family
and I am having some problems with my Bulbar region.  If I pushed for an emg would it be too early to tell if I had ALS because I
am really only having problems tongue and speaking.  My swallowing seems fine.  I also have body twitching all over including my neck muscles and sometimes (about 1 or 2 times per day) in my tongue.  Can I be reassured that this is not ALS and something else that you may know of?  I would really appreciate your opinion.  I have researched and discovered there is a burning mouth syndrome that I may have.  Does this sometimes come with difficulty speaking and muscle twithing?  Have ALS patients ever
had burning in thier tongues?  

[CCF Neuro[P] MD, RPS]

Dear sherlyn:

I am not sure why you are having the symptoms you describe.  I have not seen your workup nor done the physicial exam.  From the medication your on I would suspect that you have benign fasciculations, but I can't tell for sure.

Sincerely,

CCF Neuro MD

[Sherlyn to CCF Neuro MD]

I thought I was doing well with the medication (nortripeline & clonazepam), but now I have noticed that my tongue is fasciculating more and more each day.  The Clonazepam seems to help the burning tongue sensations but I still have twitching even when I take the medication.  I had an emg done on my tongue 3 weeks ago that came back negative- this was before the tongue was fasciculating so much. My tongue looks like it is waving or fluttering even when I'm looking at it with my tongue still in my mouth as well as sticking it out.  Sometimes I'll just feel a good strong twitch.  It does not look like a bunch of worms....yet at least.

I had a neuro exam with a general neurologist and he detected no weakness in my body and reflexes were normal.  I could do all the normal movements of the tongue. I've also had qutie a bit of  general blood work done - like for thyroid problems, B12, electrolytes, imflamations, anemia- etc.   A few questions that I have:

1- My neuro says that if I had ALS, the emg would have been positive even before I had tongue fasciulations or shown any symptoms of the disease.  Is this true?
    
2- My tongue still burns- could the burning cause the fasciculations?  My neuro thinks this burning sensation is a postpartum (sp?) hormonal problem. (I had a baby 5 months ago- my third child- no postpartum issues with other children).

3-Should I go see an neuro-muscular specialist at this point or would it be a waste of time? My neuro refused to refer me because my emg was normal.  It's a lot of work for me to get to these appointments having to find childcare, get work off etc. Am I being over anxious for a dx that can not be determined yet?  I changed my primary care doctor today and have an appointment with her in two weeks.  Should I push her to refer me to a neuro-muscular doctor?  I can see someone in the Mass General Clinic if she will give me the referral.  

4- Could the clonazepam hide symptoms of a disease like ALS?  I'm feeling uncertain about taking this medication since it is addictive and when I have tried to eliminate it gradually, I start having symptoms like my nervous system feeling out of whack -like more twitching, burning tongue, and trembling. I take 2-3 .5 MG tablets per day.  I really don't feel like stress or anxiety is causing me to twitch.  My neuro thinks I should stay on this medication and up the nortipeline from 50 mg.  I really don't feel depressed at all.  

5- My muscles in my neck also feel tender, especially after I have been eating or talking for a while.  They also twitch from time to time.  Would an MRI of my neck show anything related to the problems I am having?

6- Is this burning tongue thing very common and how long does it usually last?  I'm going on 4 months now.        

Sorry I have so many questions.  I just feel like I'm spinning in a world of uncertainty.  Thanks for all your help thus far.  

[sherlyn to kim]

I have been thinking about you and wondering if you have found a diagnosis. I hope and pray you are well.

[Sherlyn]

Kim...I'm so sorry that you have to find out what you may have during the holidays. What bad timing. I have been thinking about you and wondering what you might have.  Please let me know what you find out.  I'm keeping my fingers crossed for you.

I am still having problems with my tongue twitching and also twitches all over my body. I have never had problems with twitching before and I'm only 31 years old so it all seems very strange for me.  If the neurologist still reads this post, could he/she tell me what may cause all this twitching and should I be concerned?  I don't feel overly anxious, especially since I take clonazepam every day. Could this be a side-effect of this drug?  My tongue starts to burn as soon as the clonazepam wears off.  Is this an unusual thing or something common? I had an emg done and the Dr. put a needle in two different places and said that my tongue was fine from what he could see for now.  Could I sub-consciously bring on all these twitches?  Any information you could provide would be wonderful. Thanks!

[CCF Neuro[P] MD, RPS]

thanks for telling how things are coming along.  I hope that your symptoms are not MS.

Sincerely,

CCF Neuro MD

[Kim W.]

Hi Sherlyn;
Just an update since I saw the MS specialist on Wed.  He said between some abnormalities on the exam and my symptoms he highly suspects SOME sort of demyelinating disease of the CNS but can't commit to saying its MS at this point.  He ordered another test, evoked potentials, and I had that done on Friday.  Don't know the results of that yet but i guess I'll find out this week.  Hope you are doing well.  Please update you condition.  Take Care and Happy Holidays!