Is there stuff other than ALS?

Post your questions about BFS here

Moderators: JohnV, Arron, garym

Is there stuff other than ALS?

Postby javens on October 13th, 2002, 2:06 am

I was just wondering...not to get anyone stressed out mind you.
Is ALS the only disease that has twitching? Are there diseases that present with twitching? I've heard of Kennedy's disease and Lyme disease having twitches. I've been tested for lyme-negative. And I read that Kennedy's disease is genetic and you're unlikely to have it if it's not part of your family history. Are there other rare diseases that I should be tested for?
javens
Member
Member
 
Posts: 46
Joined: October 13th, 2002, 1:23 am
Location: Dallas

Postby Twitcher(nli) on October 13th, 2002, 10:30 am

Sure, there are several conditions that cause muscle twitching. The important thing is to remember that not all twitching is associated with a disease. BFS and stress are two things that come to mind.
I don't know what tests you have undergone thus far, but I would recommend a visit to a Neurologist at a major medical center.(if possible) If you're really worried about the twitching, have an EMG done. If it comes back clean, you're basically home free. Also, ALS is very rare. Your chance of developing it is .00001% - literally.
Twitcher(nli)
 

Postby Arron on October 13th, 2002, 10:49 am

Yes Javens, there are a number of other diseases or "conditions" that present with twitching other than ALS. The thing to know here is that ALS is the biggie, with the worst symptoms. There is yet another nasty one out there too but darned if I can remember the name of it. It's works even faster than ALS and is always fatal but it doesn't present with twitches at all, so we don't hear that much about it, besides, it is even more rare than ALS. There are other syndromes that present with twitching, dog gone if I can't remember the names, I must be having a brain fart right now or something, but NONE of them are nearly as bad as ALS and they are about as bad as Fibro and BFS, so no one really worries about them. Isaak's Syndrome is one of them. My brain fart is lifting! Anyway, that's why the doc's don't get too concerned about anything once the biggie, ALS, has been ruled-out.
Last edited by Arron on October 13th, 2002, 7:56 pm, edited 1 time in total.
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Postby Twitcher(nli) on October 13th, 2002, 1:05 pm

Hi Arron, don't want to be rude, but MG (Mysenthia Gravis) is NOT always fatal. In fact, it is rarely fatal. Just wanted to point this out in case someone who thinks they may have MG reads your post and freaks out.
Here's a snippet of info about MG...

Myasthenia Gravis is a neuromuscular disorder primarily characterized by muscle weakness and rapid muscle fatigue. Although the disorder usually becomes apparent during adulthood, symptom onset may occur at any age. The condition may be restricted to certain muscle groups, particularly those of the eyes (Ocular Myasthenia Gravis), or may become more generalized (Generalized Myasthenia Gravis), involving multiple muscle groups.

Most individuals with Myasthenia Gravis develop weakness and drooping of the eyelids (ptosis); weakness of eye muscles, resulting in double vision (diplopia); and excessive muscle fatigue following exercise. Additional features commonly include weakness of facial muscles; impaired articulation of speech (dysarthria); difficulties chewing and swallowing (dysphagia); and weakness of the upper arms and legs (proximal limb weakness). In addition, in about 10 percent of cases, affected individuals may develop potentially life-threatening complications due to severe involvement of muscles used during breathing (myasthenic crisis).

Hope that clears things up a little.
Twitcher(nli)
 

Postby javens on October 13th, 2002, 6:13 pm

Does an EMG pick up damage to the muscle caused by all diseases period? or just ALS? I've had a clean EMG performed by a well respected neuro at Baylor university. Does this mean that there is no possibility for muscle damage? I twitch and get sore. I started out twitching all over my body ...now it's mostly in my legs. I've been twitching for 3 1/2 months. I get stressed out when I twitch and then feel sore in those muscles.
javens
Member
Member
 
Posts: 46
Joined: October 13th, 2002, 1:23 am
Location: Dallas

Postby Arron on October 13th, 2002, 7:54 pm

Twitcher (nli) you are right and I certainly don't take offense to being corrected. I was thinking MG was what Dudley Moore died of. I was totally misteken. My brain fog has been pretty bad lately and I just goofed on the name of it. Now I can't remember what the real name actually was but it is REAL nasty compared to ALS. It was talked about on the MedHelp.org site by the neuro a while back. Man what a goof! I am sorry everyone for saying it was MG when in fact, I was wrong. This brain farting or brain fog I am having is not very good. And PLEASE do NOT freak out people, this other bad one has nothing to do with twitching at all and like I said, it is really rare compared to ALS, and we all know how rare ALS is. Sorry for the screwed-up post. I will go back and edit it so it doesn't freak people out. Thanks again Twitcher NLI for the correction!
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Postby Twitcher(nli) on October 13th, 2002, 8:39 pm

Hi Javens, me again. 8~)
An EMG is a very sensitive test that can pickup many problems with a muscle. If the muscle is not receiving an electrical impulse as in the case of denervation, an EMG will pick this up. I don't think anyone on this message board can answer your question accurately though...that would require a skilled physician with extensive knowledge of the limitations of an EMG. My guess is that no, an EMG can not pickup *all* disease caused muscle damage. Just a guess.
What your real question is, is can I have some rare disease that was missed? You should trust your Neuro. Having been checked out at a major university is excellent. A clean EMG is great and you can certainly relax.
I think most of us here get sore from the twitching at times. It makes perfect sense if you think about it. Your muscle fibers are constantly contracting and relaxing. Eventually, they can become sore from being used constantly. The tension from being stressed also contributes to the soreness. Maybe you should look into seeing a psychologist to learn some relaxation techniques.
As long as you don't have weakness, and have had all of the required blood tests done, you have nothing to worry about. Worrying will only make things much worse.
Good luck! We've all been in your shoes. With time, you'll become *used* to twitching.
Twitcher(nli)
 

Postby twitcher(nli) on October 13th, 2002, 8:45 pm

Dudley Moore had progressive supranuclear palsy.
Ok, I really need a life. 8~)
twitcher(nli)
 

Postby Arron on October 13th, 2002, 9:36 pm

Thanks Twitcher (nli). I think that was the other nasty one I was thinking of. One of the neuro's on the MedHelp.org site was mentioning it and man, did it dound bad but again, it was VERY rare and had NO twitching involved. Thanks for the info and the correction.
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Postby javens on October 14th, 2002, 2:39 am

Thanks twitcher(nli) ! You're very helpful and reassuring! I've had a better work up then I think most people have had. I'm a 22 yr old male. All this started in at the end of May. I had a pain in my groin that returned(I'd had the same pain for about 3 weeks last fall) and was convinced that I had cancer or something. I freaked out and couldnt get it off of my mind for a couple of weeks. Then I started getting pains in my upper right chest when I would breath in deep...and then in a couple days pain throughout my ribs. I thought "oh no, the cancer is spreading". i went to my Dr. and he did a chest x-ray(normal). He then ordered a ct scan of my abdomin and pelvis(both came back normal) he said that I had some kind of muscle pull in my groin and freaked myself into an episode of costochondritis. I'd also had diarrhea for a couple of weeks so he sent me to a gastroenterologist. (I looked up chronic diarrhea on the internet and all kinds of terrible things came up)He did a colonoscopy and an endoscopy with biopsies and did stool samples, blood tests etc... everything was normal. He says I have "irritable bowel syndrome". I went to a chiropractor in the beginning of july and I told her about my groin pain that I'd had ...she said "hmm, I wonder if it's some kind of muscle disease". That freaked me out again. I constantly had my health on my mind and felt depressed about it. Then, around July 14...the twitching began. I first got a twitch on the front of my left thigh...I did'nt think much about it..then within two days I was twitching all over the place. I looked up twitching on the internet and BAM...I was afraid of ALS or something like it. I was sure that I was going to die and people would say "what a shame..he had such a great future ahead of him". my Dr. did tons of bloodwork(all normal... good even). My cpk muscle enzyme level was very low(muscle deterioration very unlikely). He then sent me to a neuro at baylor university for my peace of mind. My EMG was done well and was clean. By this time I was getting sore in my muscles and felt exercise fatigue.(i could still lift very heavy things though) I also felt shaky at times. I had some bad headaches and told my Dr that I was seeing glare around lights at night as well a some floaters. I was also getting a creaky sound when I would roll my neck around. He had me get an MRI of my brain, C-spin,T-spine and L-spine.
They were all completly normal...the most normal he's seen. I saw another neuro who told me that it was some kind of fibro/bfs/cfs thing and that I was feaking my self out and feeling worse because of it.
I work at starbucks and have incredibly great insurance. i know that not everyone can afford the tests. I've had all the tests that my Dr. can give and they all came back normal(well...my bad cholesterol was a couple points too high). i still have aches and pains. I still twitch, though not as much as when it first started. I still get pains in my ribs...but after all that I've got to be pretty sure that what ever I have is benign. i hope that this is of some help to you guys. I'm sorry this was so long! I just started blabbing :D i'm so glad that I found this site and found other people that deal with the same fears and problems. Thanks guy's!
javens
Member
Member
 
Posts: 46
Joined: October 13th, 2002, 1:23 am
Location: Dallas

Sponsor

Sponsor
 


Return to Questions About BFS

Who is online

Users browsing this forum: No registered users and 10 guests