Concerns about Bulbar ALS

[logtaads]

Early Jan 06, I started experiencing shortness of breath while lying down.  Then 15 Jan 06, my left bicep started twitching.  Prior to the shortness of breath and twitching, about Novenmber 05, I started having difficulties with my speech, i.e., I would stumble over words or say acuth rathet than acuse and poithon rather than poison.

I went to a neurologist, he did an exam that included a brief EMG.  Meaning, he stuck a needle in my left bicep, right bicep, upper and lower right leg and upper left leg.  He also had me stick my tongue out as hard as I could for what seemed like a long time.  The whole exam lasted about 20 minutes for everything.

Even though the EMG picked up the twitching in the left bicep (hard to miss because the whole muscle was bouncing around) he said it was normal and that I do not have ALS.

A week later I started getting random twitching all over, arms, legs, stomach, chest back, face and my tongue.  I also developed hoarseness which is still with me, and feel like I am having a more difficult time swallowing and at times excess saliva in my mouth.

I went to another neurologist, who once he found out I have Tourette's ascribed all of my symptoms to Tourette's.  I asked for another EMG to include checking my throat, tongue, etc., and he ordered one but only of my left arm again.  

He said the EMG was normal.  However, my speech and breathing are not any better and I am very worried.  The neurologist believes that the breathing, twitching and so forth are related to my Tourette's.

How is that possible?

[CCF-Neuro-M.D.-PW]

I cannot give you a formal medical opinion over the internet, as this website is purely educational

Muscle twitching or 'fasciculations' in the absence of muscle weakness or wasting are not suggestive of ALS. Twitching that is widespread at the start is also not suggestive of ALS. There are many more common causes of muscle twitches such as an overactive thyroid gland, a response to cold, exercise or certain medications, a benign syndrome with or without cramps, or some spinal cord problems.

There are criteria for the diagnosis of ALS requires the objective evidence either by clinical examination or electrophysiology (ie EMG) of neurological signs in 3 limbs for definite ALS. Also, there must be no other alternative findings by EMG or MRI.

Tourrettes cna cause a dysartria or slurring of speech so this is a possible cause. However other causes should be looked into before assuming this, such as stroke, cerebellar disorders, medications etc there is a long list of causes of dysarthria/slurred speech. Tourrettes as far as I am aware does not cause fasciculations or breathing problems. Difficulty breathing may also be due to heart of lung probems. The difference between tics and 'tiwtches' are that tics are often larger movements, more complex (ie actions, verbal), suppressible. Facuculations are mostle regular or frequent ripples/twitches in the muscle that mostly do not cause movement.

Good luck

[Jmcc06]

I have seen people with your condition in this predicament. I do not know why. If I were you I would begin a massive research project.
Always remember that nothing is set in stone and that this could be a combinatory effect.

I feel for you.
Jmcc.

[logtaads]

Thank you for your comments.  

I agree, nothing is written in stone and based on the respiratory function test I had today, maybe Tourette's can be involved in some of the symptoms I am experiencing.  Based on the numbers it appeared to be normal.

Standing              Lying Down
IVC = 102%            IVC = 100%
IRV = 1.21            IRV = 2.09
FVC = 100%            FVC = 96%
FEV1 = 106%           FEV1 = 98%
FEV1%VC = 103%        FEV1%VC = 98%
PEF = 135%            PEF = 116%
MEF75%VC = 149%       MEF75%VC = 129%
MEF50%VC = 117%       MEF50%VC = 82%
MEF25%VC = 105%       MEF25%VC = 81%

Well, I assume these numbers mean that my breathing is fine.  Now it is a matter of figuring out what the cause of my shortness of breath and my other symptoms.

It is tough not to worry because as I wrote before I have had Tourette's for over 35 years (I am a 43 year old male) and never experienced the things I am feeling now.

I suppose time will tell.  Thanks again.

[iyamnancy]

My mother is six months s/p 3 level cervical corpectomy from a cervical spondylolis dx.  Yesterday she was diagnosed with Bulbar ALS, she has had swallowing difficulties, severe speech problems and SOB since surgery and had aspiration pneumonia two weeks after surgery.  I thought her symptoms were possibly due to recurrent laryngeal nerve.  I am having a difficult time with her new diagnosis.  Where were the symptoms prior to her surgery?

[logtaads]

Sir/Ma'am,

Thanks for your comments.  I saw the neurologist for a follow-up on 27 Mar 06, and he still thinks that tongue twitching and the rest are still due to my Tourette's.

I suppose all I can do is pray and wait and see because as he put it, "one is either pregnant or not," meaning, time will tell and that if I am ill then we should see in a few months, if not, well, then I'll be thrilled.

I just hope that there can be tongue twitching, which affects speech and it not be serious.  Thanks again.

[Gparrott]

over a year ago i started to have problems with my speech. other people didnt hear it but i knew that i did.  In June i went to my family doctor and he blurted out Parkinsons disease and wanted me to be started on a parkinsons med. i totally refused. He ordered a MRI of my brain and that was negative but eh speech thing progressed. In Sept he sent me to a Neurologist in fact i saw 2 of them and had a EMG which was neg also..both of these Neurologists said that they didnt see anything wrong with me and felt it was all caused my stress, so at that point i started to see a therapist and i was put on antidepressants. things continued to progress with the speech and i went back to my family doctor and he blurted out ALS. I totally freaked out and went hysterical. we requested a consult to Mayo Clinic which I went there in January. I had a week of testing, everything from EMG.to MRIS and 13 vials of blood and a 24 hour urine. i saw two neurologists there also. they did find on the EMG some facial nerve weakness but other then that i have no other signs of ALS, but the last Neurologist specialist said to me PROBABLE ALS...which again totally freaked me out and sent me into shock. she wants me back in May for a week of retesting.  The only real problem is my speech and my tongue is weak. so chewing is hard at times..i also have more saliva at time..I have a friend in Denmark that is an alternative Doctor. I contacted him and he invited my husband and i over to see him and we spent a month with him. After his exam,in which he checked the mercury in my teeth he said to me.."you do not have ALS, you have mercury toxcity"...he made an appointment with a dentist there that specializes in removal of mercury fillings...
i spent 3 days there and had 2 teeth pulled,one which they found a tool still down in the root canal that had broken off years ago and the dentist that did this root canal just left it in there and didnt tell me.  The normal level of mercury in a persons mouth should be under 20 ....mine registered 167 in one tooth alone.  He said he has not seen this high of a level in years and years.. He explained how mercury toxicity can cause the same symptoms as ALS, which i have looked up on line and also found for myself. When i went to Denmark my family doctor had me on pills for high bloodpressure, which i have been on for 16 years, hormones, antidepressants, and a sleeping pill....
Now i am totally off all these pills and my blood pressure is normal...i am sleeping at night and feel good inside....
i am taking natual supplements..and eating a very healthy diet.
I have been told that it can take a year to years to rid the body of the mercury poison..i have an appointment here with my local dentist because i still have three gold crowns in my mouth and i dont know what is under each of those gold crowns..
but i will have them removed also..when my husband talked to our dentist and asked about the mercury, he told my husband that it is illegal for them to suggest to remove the mercury only if the patient requests it..SOMETHING HAS TO BE DONE ABOUT THE DENTISTS STILL USING THIS HORRIBLE STUFF IN PEOPLES MOUTHS.I am a registerd nurse and now had to give up my job because of my speech i could not fulfill this position. It was very hard for me as i have worked there for 13 years. I also have Celiac disease, which i have also found out that can be cause too, by mercury poisioning...when i had the blood tests and urine tests in Mayo, it did not show any mercury in my body...so these tests are not realistc in finding the mercury in ones mouth..and this is where it is doing the damage...
i would suggest to anyone, if you are having these symptomes to check out how many silver fillings are in your mouths...and also go on line and read the signs of mercuy toxcity....

[logtaads]

Are you feeling better now that the fillings have been removed?

[Gparrott]

my speech is still the same.  but i have been told by both the Dr in Denmark and also the Dentist in Denmark that did my work that it will take some time to get better...also i still have to see my own dentist, and have the 3 gold crowns checked to see what is under each of them. From what i have been told and also all that i have read about detoxifying the mercury, the symptoms will get worse at first and then start to get better,so i must take one day at a time.

[Gparrott]

i feel really good, it is just my speech that is difficult..
both the Doctor and Dentist in Denmark said to me and i have read about it as well, it does take time to detoxify the mercury from a body...it is a  very long process.  i am taking the supplements and eating very healthy...i just pray every night that when i wake up i will be talking like my old self again...it is very hard...

[holbalsa]

I know that I am commenting on this months after the fact...hoping you still look your old stuff up. I was wondering how you are doing now (in July 2006). I have started the removal of fillings as well and also had two surgeries to remove bone cavitations(-WHICH IS ALSO A MAJOR LINK TO NEUROLOGICAL GLICHES). So I would be interested in finding out how things have gone for you.

[buster1936]

A related discussion, bulbar als was started.