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?  

[dot]

I would like to respond to Sherlyn's comments regarding a burning tongue and also twitching.  In 1991, after having a TMJ problem (one side of my jaw would slide off track, I developed a burning sensation in the back middle of my tongue.  At times, it would feel like ants all over that area, or electrical sensations.  When I asked my jaw doctor about it, he remarked it had to be in my mind, but I wasn't satisfied.  I had my OBGYN check my tongue, and he said it looked good to him,  I had my dermatologist check it, and he didn't think there was anything to worry about. But, I did worry, and worry, and worry.  Then I got eyelid twitches, and lip twitches.  Finally, It was diagnosed as symptoms of depression, and I thought that doctor had lost his mind.  After taking antidepressants, the problem went away.  It was more like a mast depression.  I had tried anxiety medication, but it did not get rid of the tongue problem.  But I never thought of the antidepressant getting rid of it.

Sincerely.
A friend who knows what you're going through!

[Sherlyn]

Thanks so much for your comments.  I can't tell you how reassuring it makes me feel.  I forgot to mention that I also sense a loss of balance when I walk and occasional cramping (not too painful) in the arches of my feet and sometimes my right hand.  Are these ALS symptoms?  I have been excercising more so I have associated this with the cramping. I am going to try and put ALS aside in my mind as you said.  I may be just thinking too much about my body and associating it with ALS.  

In regards to difficulty speaking and burning tongue could it be that I have damaged a nerve somewhere and is it possible for it to heal?  Could it be a virus?  I noticed all these symptoms about 3 weeks after I had a root canal.  I have been reading a little about mercury poisoning and the effects it may have on the nervous system.  I have a mouth loaded of analgam fillings.  It really seems coincidental to me that so many people that have MS and ALS have several of these fillings (including in my own family with mother/sister with MS and grandma with ALS---all having extensive dental work with analgam).  What is your position on this?  I am considering having mine removed. Do you think this is a waste of time and money?  How would I know if I have mercury poisoning?  Is this a simple test that a neurologist could do and how is mercury ridden from the body?  Sorry so many questions!  I'm just happy to hear from somebody who will listen and respond.
thanks

[CCF Neuro[P] MD, RPS]

Dear Sherlyn:

Sorry for your symptoms and what they must be doing to your emotional state.  As you know familial ALS is fairly rare, with the estimated percentage of 10%.  So, most ALS is not inherited.  Second, ALS is a motor neuron disease and it does not have any sensory symptoms (like the burning parasthesias you described).  Muscle twitching can be due to various things, ALS being one but it is not highly specific without obviously definite muscle weakness.  The EMG criteria for ALS is very strict to keep the diagnosis firm and documented between institutions and ALS patients.  If you have pronounced symtpoms, an EMG would likely show denervation and muscle loss, a myopathic picture.  The bulbar form of ALS is a rapid decline and you would be really feeling the disease within months of symptoms.  All what I have said puts the diagnosis of ALS on the unlikely side.  There are no definites in medicine, but at this point with what you tell me I would not label you as ALS.  

The MRI would suggest that you do not have MS, and also the lack of relapsing, remitting symptoms would not indicate MS.

I think that maybe for your emotional state, I would recommend that you get a second opinion from a neurologist familiar with ALS.  I doubt that you have ALS, but a second opinion to confirm you initial neurologist thought and what I think, would definitely help you sleep better at night.  Furthermore, it will likely take a few weeks to get an appointment, and the tincture of time will help in the physicial.

Sincerely,

CCF Neuro MD