CPK 4400

[Aranda]

Hello,

I've been feeling terrible... numbness in toes and tingling in feet, aches from elbows down to fingers, weak back muscles, leg muscles (front of upper legs) my eyelids seem to have drooped fast (I'm 35, some should be expected, but this has been noticed in last 2 mo) I had this same "attack" a year ago and was horribly diagnosed with fibromyalgia and then with Mono by a different doctor. We've since discovered (new doctor) that it was not mono. I'm exhausted and weak. It hasn't overtaken me, but sure has slowed me down.

We just got back the results of my cpk and it was 4,637.  We are in the process of more testing, but thought I'd try posting this and see what comes from you all. I have a feeling it is going to be a long process to figure out what is wrong. I'm not sure what symptoms are connected (I have had lots of twitching - like in my thigh area and other little things like that)

Thank you.
Aranda

[Break]

I have the same symptoms like you. My neuro is unable to figure what might be wrong with me. I have had muscle twitching and sligtly elevated CPK. Hopefully it is not ALS.

[patsy10]

I would suggest a muscle biopsy for myositis.  My friend had the same symptoms although her cpk was normal.  They couldn't figure out what was wrong.  They found myositis on a muscle biopsy.

[BetteB]

I have been on the forum before, had the same tests as many, brain mris: 3 small non-significant lesions frontal lobe left, 1 right. Several immune assays over time, bloodwork, nerve studies, spinal tap: all clear/normal, except for low end of normal vit B levels although I take B complex daily. thought first MS. Started Provigil for fatigue. worked better on concentration and focus. So here I am 3 years later....just now may be getting the handle on it all...I hope...

Muscles ache, swell, get hot, develop a measly looking rash, and can cramp as bad as severe spasticity. eyes just finished with a bout of severe pain, light sensitivity, and only one time did eye doc find eye muscles inflammed. Other visits to ERs showed back muscles swell with rash and fever sensations,  thigh required hospital visit with friend driver from severe spasticity, they offered morphine in it. When thought by current neuro I was crazy, I went to a referred doc who saw clinically by looking they were sure it was myositis type 5 on examination. What does that mean? Now, between the shoulder blades, extreme pain of muscles on both sides of spine become very tight. Was given myositis blood test and came back negative for blood work, why won't anyone give a biopsy? I have asked but no doc addresses it. All muscles act up in this way at different times. Complications: atrophy in hands between thumb and forefingers on top, feet match but are all over with no muscle left hardly near extremities of toes up to heals. lower calves atrophy, right more than left. neuropathy: keppra dosed, baclofen, klonipin; to change these for other muscle relaxors and sleep issues from pain when laying down on muscles waking up at night. Twitching, clonus as well, everywhere, nystagmus after this latest bout very bad...How can I get a muscle biopsy??? Need relief badly, maybe this can help someone else.   Good Luck to Aranda.