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]

thanks for your comments.

CCF Neuro MD

[sherlyln]

Thanks so much for your comments.  AT this point in my life I'll try anything to figure out what is wrong with me.  I'm not going to give up the fight on this and "just live with it" as my dr. told me.

[To Poster/To Dot]

To original poster:  I would like to say that I am now (after 4.5 years of symptoms) being worked up by an institution in Phila.  I will not mention which one.  They are taking it far beyond the standard testing and looking for very specific diseases (Behcet's, Sarcoid, Porphyria and Mitochondrial).  They are looking for systemic autoimmune diseases.  I believe you should see a rheumatologist.  Some systemic diseases such as Sjogren's (burning tongue can be caused by dry mouth) and Behcet's can cause oral problems.  Autoimmune diseases can cause peripheral neuropathy or hyperexcitable peripheral nerve syndromes, which you might have at least in my opinion (loss of balance, twitching, cramping).  I am concerned by your mention of swollen glands.  Finally the doctors in Phila. saw my glands and said I do have lymphadenopathy, which I have been trying to get the doctors to comprehend as I said for 4.5 years to no avail!  Again, autoimmune diseases can cause lymphadenopathy.  Good luck and I hope you get a "real" diagnosis soon.  

Dot, can you please tell us which anti-depressant helped you?

[CCF Neuro[P] MD, RPS]

thanks for the comment.

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Sherlyn:

Mercury can cause a neuropathy, but not MS or ALS.  The etiologies are unknown of the two latter entities, with upper motor neuron problems in the former and both upper and lower motor neuron problems in the latter.  The latter there are no sensory problems.  Second, in the latter it would be very unusual to have both bulbar and extremity problems together at the beginning of the disease.  If you are worried about mercury poisoning, then get a mercury level.  If it is normal, I wouldn't worry to much about your fillings, but I am sure that with managed care your dentist would love the extra money. The root canal may be part of the problem.  It would depend on the location and the oral surgeon, but there might be a correlation.  See, how long it persists.  It it is mild nerve trauma then it should resolve over the next few weeks.

CCF Neuro MD

[Sherlyn]

Do you know of any other neurological disorders that would cause speaking difficulties associated with the tongue that I could be experiencing?  Is this a common thing that happens to people?  I feel so alone with this problem.  What could be causing the burning sensations in my tongue?  Sometimes my tongue feels a little swollen but when I look at it in the mirror it looks perfectly fine and healthy. Sometimes my lymph nodes in my neck feel like they are swollen or sore, but when I feel them they are not. Am I perhaps feeling muscle weekness instead?  I also get twitching in my lips.  I have three little kids that I'm madly in love with and I can't help thinking that I have something seriously wrong with me (like ALS)  that will eventually impair me or take my life. Since it has persisted for 3 months I feel like I'm living in a nightmare. Don't get me wrong in that I am not overly stressed out and I am getting plenty of sleep etc.  I'm trying to block the symptoms out of my head the best I can. I'm trying to approach this as rationally and optimisticaly as possible.  I have an emg scheduled for Dec. 16 and then I see my neurolgist again in January.  It seems so long to wait for these answers. Thank you so much for your time and God bless you for helping people with this site.  I will definately donate money to the site. Thank you.