Re: new member needing help

[Guest guest]

--- Anne it is good to post your information on the forum. You

do not need to feel guilty. We learn so much from others. I am

learning from your posts and Barbara's respones. I am in the same

boat as you right now. i also have some kind of metabolic myopathy

and have been told it is not worth investigating. From what I am

learning it definitely is worth investigating. By the way welcome to

the forum!

Best Wishes,

DawnAnich

In , " lkgforansers " wrote:

>

>

>

>

> 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?