Confused---Can You help clarify?

[TRW]

I've been reading info. on ALS & Twitching in the archives and am
confused.I read in 1 article that CPK levels are good indicator of
ALS & in a more recent article that an increased CPK level is NOT
a good indicator (diagnosis) for ALS-which is correct?

Also can I give a brief overview of my symptoms to see if it sounds
like ALS b/c I am convinced that it is and I'm being misdiagnosised)

8 weeks ago numbness and tingling in my hands, legs, feet-6 weeks ago the tingling progress to a burning sensation particulary in the feet/legs. Now along w/ the burning sen (which come and go)I have some tingling burning sensation of my face &lips as well BUT what has me about to go over the edge is about 9 days ago I started having twitches ALL OVER! My arms, legs, but, stomach, back, EVERYWHERE which has me thinking ALS.  I had a slightly elevated CPK level, normal MRI on 9/29/02, a normal EMG on 10/16/02 (Neurologist only tested muscles in my right leg, foot, hand, arm) is this enough to make diagnosis?  He said "You don't have ALS"--he also said I was too young (32) but I know there are exceptions to every rule. I asked him what is the reason for the twitches-he said could be anxiety, low Carbon Dioxide (which was normal when tested) he really could not give me a reason to justify his explaination of NOT ALS. I am confused a worried about why he hasn't ordered an MRI of the Spine.Does this sound like ALS or something else????????????????????????

I wished I lived in Cleveland so that I could go to the Cleveland Clinic. Many thanks in advance!

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

The most important things we use to evaluate a patient with ALS is the clinical exam, history , and EMG findings. A normal MRI helps to rule out mimics of the disease. CK is NOT a marker of ALS. We are seeing younger patients with ALS, one recently in the pediatric clinic. SO you're not too young, but the typical age group is over 50. Having said that, if your EMG is normal with a normal neurological exam and no history of progressive, relentless weakness/real and significant swallowing problems/speech changes then it is unlikely you have ALS. THere is a condition called benign fasciculation syndrome characterized by muscle twitching that can be increased with stress or exercise, lasts for a period of time (weeeks to months) and then just goes away by itself. Good luck.

[mhotchickenpaste]

God, you sound like such a whiner.

ALS does not show senory symptoms.  Full stop.

[nurse12hr]

Ignore that person.  Hope you get help from the doc soon.

Good luck.

[t_anunson]

Hi, I had sort of a similar problem come up 2 months ago. My daughter is 2 months old. 2 weeks after having her, I started having some odd symptoms. Tingling in hands and feet, cramping in right wrist and on the side of my ankles, & muscular twitching in the lower extremities. I`ve seen a neurologist who did a blood and strength tests which were normal. He diagnosed me with stress and said if my symptoms didn`t resolve, we`d do an MRI. Well some of them have resolved, but some haven`t. So we did the MRI, but haven`t got the results back yet. I`m hoping for a normal result. The tingling is almost gone, burning is completely gone, and cramping is slightly better. I developed a dull headache about 2 weeks ago which has been persistent, but seems to be getting slightly better. So I`m beginning to think, this may be from stress. I read an article with a lady with the same situation as mine, and she eventually healed almost back to normal. So I just wanted to let you know, your not alone. These kind of symptoms can drive ya nuts. I was freaking out when mine started. But I`ve hung in there and tried to remain calm, that seems to help. When I panic, I start tingling and stuff again. I`m sure you don`t have anything to bad. Have you been under any stress? I wish ya luck!

[cyn123]

hi  i had similar problems as well.  I was afraid of ALS too.   but  i had fifths disease which is a virus and was told that  a virus can cause these  symptoms as well.  So hang in there and i hope you find an answer to your worries,   I know your fustration. Try not to stay on your computer.  I find that to much info isnt good for people that self diagnois themselves.  (like me)    Good luck and get back to life.  Its  waiting for you.

[bostrowil]

I have two questions in response to previous posts.
First: What is "Fifths Disease"?

Second: What is "Benign Fasciculation Syndrome" you mention what might trigger it but does anyone know the underlying cause?

I have persistent muscle twitching which occur randomly throughout my body. There isn't a minute that goes by where something is not twitching. It sometime seems as if some muscle strands have a life of their own.

I have a twitch in my right pectoralis that I have had for years now (sometimes it goes away for a couple days.) The twitching does not effect voluntary movement, but sometimes it can be so intense or rapid that is can quite a distraction or prevent me from sleeping at night.

As I am typing this post, my right tricep might be trying to communicate something in Morse Code (joke)? My doctors say it is related to stress, but I want to understand what is really going on. Any ideas out there?

-Brian

[cyn123]

Hey Brian,
5ths disease is the human form of Parvo virus that dogs get and can kill them.  5ths disease is named for being the 5 disease that a young child gets.  Chichen pox   cox sacky   and other virus.  It is also called slap cheek with children because it causes very red cheeks.  To a child it is usually very mild but can be severe with adults causing neuro problems for long time.  There is a test fo rthe antibodies to see if you have had it.  Hope this helps.