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?  

[savvy300]

A related discussion, Clonazepam Masking symptoms was started.

[CCF Neuro[P] MD, RPS]

Dear Sherlyn:

No, that is false, the muscle weakness that is detected on exam and by EMG changes usually precede the fasciculations but can occur with the beginning of fasciculations.  They do not lag behind the muscle weakness.

CCF Neuro MD.

[Sherlyn]

Is it true that people will twitch for a year or so and then eventually get diagnosed with ALS?  I have read where many ALS patients had twitching for a year or so and then finally experienced weakness.

[CCF Neuro[P] MD, RPS]

your welcome.

CCF Neuro MD

[sherlyn-thank you]

Thanks for your quick response.

[CCF Neuro[P] MD, RPS]

Dear Sherlyn:

As previously discussed, ALS does not give sensory symptoms but muscle weakness.  If there is senory symptoms, no muscle weakness then you do not have ALS.  The normal EMG exam would also demonstrate that you have no muscle disease or neuropathy of the tested muscle groups and nerves.  Since ALS is a generalized disease (there are focal onset forms such as bulbar but these are uncommon) then by this criteria, you do not have ALS.  No, medication could not mask the symptoms of ALS.  By the time symptoms become evident, medication does not have much of an effect on fasciculations or muscle strength.  Since I do not know why you have tongue buring, I can't tell you why or how long you should have it.  

About whether you should take the medication prescribed to you, I can not answer that question for you.  If it is not helping then not taking it sounds like a choice.

Sincerely,

CCF Neuro MD

[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!

[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.

[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.