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 the comment.

CCF Neuro MD

[Kim W.]

Thank you for your thoughts and encouragement.  Yes, I do visit the MGH forum, the people on there are really great.  I will keep you updated after I see the MS specialist next week.  You are also in my thoughts and prayers.  Take Care, Kim

[Sherlyn]

Wow.  I just can't imagine what you must be going through.  All this neurological stuff has given me a lot to think about these days as I'm sure you.  Have you had an EMG?  All the sensory stuff seems more like MS.  But I'm not a dr. so who am I to say anything. It sounds like you have many doctors you are working with.  I know the anit-depressants helped my tongue burning the most.  The burning in my tongue was as you described yours...comes and goes. There are people that have MS that complain about tongue sensations on the Mass General Hospital(Boston) sight.  Have you looked there? People with MS describe all their various symptoms on this sight. I hope you can get this resolved soon.  You will be in my thoughts and prayers.  Let me know what you find out.

[Kim W.]

Glad to hear things are going well for you.  I also take Clonazepam but for myoclonus, as well as Amantadine for fatigue.  I have numerous other symptoms, some of which could fall under stress but others don't.  I'm experiencing weakness, falling, myoclonus for almost 4 years, bout of peri-optic neuritis, numbness, tingling, muscle spasms, the list goes on.  The swallowing is believed to be neurological.  I had an endoscopy which revealed GERD and Schatzki Ring (which they dilated), but the problem persists.  I also get intermittent numbness in my tongue.  Hopefully everything will be figured out next week.  I just take one day at a time.  The weight loss has me somewhat concerned because I can't lose weight when I try to and now it's just coming off without trying.  Good Luck to you.

[Sherlyn]

Sorry to hear about your symptoms.  My burning tongue and tongue twitches (plus lip twitching and various other body twitching) started 3 months ago. I had an MRI tested negative for MS.  The neurologist didn't seem too concerned about my burning tongue and twitching for some reason.  I still opted to have an EMG to rule out possible problems which I have not done yet.  I have to say that when my tongue started burning and twitching it really freaked me out!  I thought for sure I had ALS, MS or some other disease.  My Dr. put me on clonazepam (for the panic I was experiencing) which really helped reduce the burning sensations. I did some research and found out there is a syndrome called Burning Mouth Syndrome and the causes of it are uncertain... but stress, anxiety, hormonal changes are suspected. I also researched and found that clonazepam is the drug used to usually treat it.  I then took the advice of Dot who posted a comment above and went on anti-depressants. (Thank you DOT!)  I didn't consider myself a depressed person at all and I was very skeptical, but I must say that I have been on the anti-depressant Nortriptline for almost 2 weeks and my burning tongue has almost disappeared.  Nortriptline is used more for people who are losing weight and have loss of appetite and weight like I was having. I am still having some strange articulation problems when I speak and I'm still twitching here and there, but I feel like I am getting better, especially the last 2 days.  Maybe a little more time on the Nortriptline will take care of everything. I'm still doing the EMG to make sure and I will pursue all the doctors I can until I feel comfortable with what is happening to me.  My neurologist said that sometimes when we think we have some fatal disease our minds have the ability to create many symtoms.  I was furious and offended when he said this because I didn't think that was the case with me, but I have to humbly admit that the drugs have helped me a lot.  As for MS, I certainly hope that you do not have MS. From my experience with my mom and sister who have MS, mouth and swallowing would be unusual for MS. However, if you were diagnosed with MS, I have to say from my own family experience that MS in today's world is receiving good medical attention and many drugs have been developed recently that do wonders for MS.  Difficulty swallowing could also be caused by panic if you have been feeling frightful since February. I found that symptom under panic disorders one day. I don't know if any of this will give you comfort and I'm not trying to tell you it is all in your head, but this is what seems to be helping me so far.  Good luck to you and keep me posted!

[Kim W.]

Please update on what you find out about the burning tongue.  I have many sensory and motor problems and am currently being checked for MS.  My tongue began burning (feels like I scalded it) about 2 months ago.  It comes and goes lasting for a few days at a time then disappears just as quickly as it started.  I haven't mentioned it to neuro or pcp since I am seeing a MS specialist next week.  I have also had the lip trembling.  I have had jerking of my tongue but that hasn't happened in a while.  I also have difficulty swallowing and a >30 pound weight loss since the spring.  I wish you luck on a diagnosis.  I know how difficult it is to be in limbo.  I have been in limbo since February of this year.  No one will commit to a deffinate diagnosis.  It's very frustrating to say the least.  Hang in there and hopefully you will get some answers soon.