new member needing help

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Hi Barbara thanks for your reply,

I will be more than happy to give more history and answer your

questions. I hope this doesn't end up being to long!!!!! Well first

off I think that off and on maybe in the last 5 years I had noticed

on a rare occassion some of the muscle fatigue but since it never

lasted didn't think much about it. Then after I had my kidney

removed is began to walk 3-4 miles a day and did this without

missing a day unless I was recovering a surgery. seemed like at

this point I had one medical issue after another. Then after my

last surgery it was 2 years ago in Sept was when I began having

terrible problems. That first year the muscle pain, stiffness,

muscle achiness 24/7 was unbareable. Just walking from work to the

car, I had to psych myself to do it. Doing things at work that were

once easy became very difficult. So my journey started. I have had

emg's 3 to be exact different neurologists, and all are normal. I

have had a workup that is unbelievable, been worked up for most

autoimmune diseases, negative, had MRI of the brain, lymes disease,

I found out that I had Hep C which turned out to be an old virus

that I had spontaneously cleared. I can almost think of when that

might have occured looking back at symptoms, ( I am an RN and had

some exposure and needle stick at work) but I apparently have no

active disease). I was worked up for fibrolylagia negative, most of

my blood work except the CPK's have been normal. My amonia levels

are slightly elevated and no one has yet to explain that one to me.

The first year, the muscle pain and stiffness that lasted for hours,

actually it never went away some days...just rolling over in bed at

night caused enough pain for me to wake up. This past year the

debilitating fatigue is less, my ability to do housework is better I

can push the vacuum more ( darn, I was kinda liking my other half

having to do it!!!!) I am sick of hearing the " well you are a year

older you know " Sometimes I can take one of my walks sometimes I

can't, I don't do that on a regular basisis anymore. Now here's

what I don't understand and the specialist at the University that I

finally got to see and who has never called me back, after 7 weeks

so I have written him off, was my pyruvate blood level was very very

low, yet another doc I saw drew a pyruvate kinase level and it was

low normal. The doc at the University pretty much siad to me that I

have a " mild metabolic myopathy: that I am missing one or more

enzymes at the cellular level but not enough to show up on any test,

yet are causing me problems at the energy level. He wanted me to do

the Atkins diet for awhile,( if that didn't work do high carb) take

creatine, l carnitine, and 600mg of Co Q 10. I decided to see a

nephrologist since I have a solitary kidney and wanted to see what

was REALLY ok supplement wise to take. This doc said NO to the

atkins diet to hard on the kidney, no to the creatine since I didn't

have ALS or MD, and he drew a l carnitine level which was normal and

he said that was just a waste of money since it is metabolised so

quicky in the liver, since my level was normal.

I got my primary to draw a CPK level and it initally was something

like 390 then for about 4 months I was doing pretty good and he

decided to spot check it and we both about died when it was 2000.

Seems like when it is high my symptoms are less and as the level

comes down I become very symptomatic. Someday I can't even brown

hamberger cause the repetitve motion cause severe muscle fatigue,

and now recently what use to be more intermittant is now daily, and

that is walking up a flight of stairs, I feel as tho I have just

walked up 10 flights, sometimes I feel SOB, but am not huffing and

puffing.

So that was the long version!!!! LOL the short version is he thinks

that cause of symptoms. Yet I do have days where I have a few

different symptoms. I don't remember the names of the syndroms

right now I am still learning all this, but somedays the fatigue is

so great that I can't even begin to do things and somedays the pain

and fatigue are there and I can start stuff and work thru it. I

hope that makes sense.

So there ya have a long story in a sort of short version. If there

is anything else that I can tell you that would help I would

appreciate it. I had an ishemic forearm test done but it was the

first time this doc/clinic did it and after reading about how it was

suppose to be done it was not done correctly. The doc at the U said

that he could repeat is but it wasn't worth it wouldn't tell him

anything. Of course the day he drew all my labs everything was

normal. I voiced a concern to him about the high CPK levels and my

one and only kidney and he just pretty much blew me off and said.

well if you start peeing coke cola colored urine you have a

problem...and this is an MDA doc here where I live, My husband felt

that he gave the impression since whatever it is that I have isn't

genetic, or to severe at this point that we were wasting his time.

I changed insurance this year so maybe I'll go to Mayo if things get

worse. We did catch my CPK at 400 again a couple of weeks ago and I

wasn't feeling to bad then when I really was symptomatic this new

doc that I saw drew it and it was 250....go figure. so the plan is

that the next time I am having a good period we will draw it to see

how high it is. I just had a lactic acid draw after a treadmill

stress test but don't know the results yet.

You asked about diet. Well I haven't had much of an appetite, but I

have been eating less carbohydrates then usual and I have been

feeling pretty good. I haven't done the extreme diet thing. Maybe

I should add carbs and see what happens.

I would have responded just to Barbara but I didn't know how to do

that. So I am very sorry this is so long.

Thanks and take care

Ann

ps what does wrap message text mean at the bottom of the screen

where is says send?