Mark and ...I finally found something interesting

[Guest guest]

Hey Mark and ,

I finally found something interesting. You ought to read this about elevated

CPK's.

It was posted on a Forum sponsored by the Cleveland Clinic.

Subject: Elevated CPK

Topic Area: Neuromuscular

Forum: The Neurology and Neurosurgery Forum

Question Posted By: Guy on Tuesday, June 16, 1998

Posted by Chad on April 22, 1999 at 09:13:52

I am a thrity year old male for the last three years my cpk's have been on the

rise. It started out in the range of 900-1200 and with it a have muscle cramps

and a low grade fever and migrans on top of all that.

ok now to date my cpk levels are around 2000-2200 had it higher on occasions had

many blood test ruled out just about everything and muscal biopsy and the only

thing i have come back with is Maligant Hyperthermia Syndrome.

So I'm asking if you have heard of Maligant Hyperthermia Awake Syndrom that

seems the way my doctor is taking it at this point in time.

The medications that i am taking is Dantram at 75 mg,,

plese help with any way you can and if it is possible i would like to talk with

others with long term elevated cpks...

Thanks,

Chad sorry so breif at this time.

---------------------------------

Posted by CCF Neuro[P] MD, RPS on April 22, 1999 at 10:57:28

Dear Chad:

Sorry to hear about your problem. How did the diagnosis of malignant

hyperthermia come about? What did the EMG show? Usually we only we high CPK

levels when the muscle is abnormal. Since all your tests have come back normal

and I don't have the physical exam to note, what I am thinking is the

possibility of a metabolic disorder, a mitochondrial problem. The usual tests

would not pick up this problem. This disorders can be found in the context of a

normal muscle biopsy. Ask your physician to consider this entity, as it is

associated with malignant hyperthermia, migraine, and muscle cramps. The second

suggestion is a calcium channelopathy. This disorder has been associated with a

type of malignant hyperthermia and migraine. There is a genetic test for this

entity, but it is only done in research labs. I am not sure which research labs

would run this test for you.

Sincerely,

CCF Neuro[P] MD

---------------------------------

Posted by Chad on April 22, 1999 at 12:42:10

The MHS was set off during surgery in 84, and my EMG was done 2 years ago and

all i remember they said there was slight abnormality with it. I don't have

seizures so not to sure if that changes what you might think it could be. The

symptoms are kinda like having the flu all the time, aching and a low fever 99.4

to 100.5 sometimes a little higher always tired and no energy and sometimes go

days without sleep from the symptoms, but i have notice with the Dantram if i

quit taking it for a few days then i start having chest pains, which showed on

an EKG as abnormal. During all of this we have ruled out auto-immune.

I like to say thanks for the help.

Chad

---------------------------------

Posted by CCF Neuro[P] MD, RPS on April 22, 1999 at 16:45:07

Dear Chad:

The EMG is for muscle not seizure activity. Neither of the problems I mentioned

have to include seizure activity. Both can be seen with what your describing

without seizure activity.

CCF Neuro[P] MD

[Guest guest]

Dear ,

What you found is great, maybe an eureka moment! (Write to Chad.)

They never post the names of the MDs who answer, do they? (Probably some

struggling senior resident.)

I had a coma after surgery once, have muscle cramps, have had mildly

elevated CPK levels. migraines. You, too ?

Please see if you can get to see a mito doc. After having said that, I

hope the doc who told you that you had this " benign CPK syndrome " is

not a mito doc...

Press on, . We patients have to kiss a lot of frogs, as the saying

goes.

Good luck!

S.