new member needing some help

[Guest guest]

Hi all,

I have been diagnosed with a " metabolic myopathy " muscle biopsy

was normal but my CPK levels are always all over the place.

anywhere from 250-2000. I understand that that isn't really that

high but high enough to cause severe symptoms some days for me. I

previously was an avid walker doing 3-4 miles a day, now I can

barely make it up a flight of stairs. I have a blood pyruvate level

of .o6 but my pyruvate kinase is normal. Just had a stress test

which they did a lactic acid draw at the end but don't have the

results yet. Seems like when my CK levels are high I am

assymptomatic, and as they come down is when I have my worst pain

and fatigue. I have seen a " neuromuscular spec " but I must have put

him off for he has never returned my call about the pyruvate. I

currently take 600mf CoQ10, other things he wanted me to try I was

told by a nephrology consult not to do since I have a solitary

kidney , previous hx kidney cancer

thoughts suggestions Ideas!!!!!! all welcome

thanks

mak

[Guest guest]

mak

I can't help you with your specific questions but wanted to welcome you to

the group.

laurie

>

> Reply-To:

> Date: Sun, 12 Dec 2004 14:01:29 -0000

> To:

> Subject: new member needing some help

>

>

> Hi all,

> I have been diagnosed with a " metabolic myopathy " muscle biopsy

> was normal but my CPK levels are always all over the place.

> anywhere from 250-2000. I understand that that isn't really that

> high but high enough to cause severe symptoms some days for me. I

> previously was an avid walker doing 3-4 miles a day, now I can

> barely make it up a flight of stairs. I have a blood pyruvate level

> of .o6 but my pyruvate kinase is normal. Just had a stress test

> which they did a lactic acid draw at the end but don't have the

> results yet. Seems like when my CK levels are high I am

> assymptomatic, and as they come down is when I have my worst pain

> and fatigue. I have seen a " neuromuscular spec " but I must have put

> him off for he has never returned my call about the pyruvate. I

> currently take 600mf CoQ10, other things he wanted me to try I was

> told by a nephrology consult not to do since I have a solitary

> kidney , previous hx kidney cancer

>

> thoughts suggestions Ideas!!!!!! all welcome

> thanks

> mak

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

mak

I can't help you with your specific questions but wanted to welcome you to

the group.

laurie

>

> Reply-To:

> Date: Sun, 12 Dec 2004 14:01:29 -0000

> To:

> Subject: new member needing some help

>

>

> Hi all,

> I have been diagnosed with a " metabolic myopathy " muscle biopsy

> was normal but my CPK levels are always all over the place.

> anywhere from 250-2000. I understand that that isn't really that

> high but high enough to cause severe symptoms some days for me. I

> previously was an avid walker doing 3-4 miles a day, now I can

> barely make it up a flight of stairs. I have a blood pyruvate level

> of .o6 but my pyruvate kinase is normal. Just had a stress test

> which they did a lactic acid draw at the end but don't have the

> results yet. Seems like when my CK levels are high I am

> assymptomatic, and as they come down is when I have my worst pain

> and fatigue. I have seen a " neuromuscular spec " but I must have put

> him off for he has never returned my call about the pyruvate. I

> currently take 600mf CoQ10, other things he wanted me to try I was

> told by a nephrology consult not to do since I have a solitary

> kidney , previous hx kidney cancer

>

> thoughts suggestions Ideas!!!!!! all welcome

> thanks

> mak

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Hi mak,

I have a metabolic myopathy--CPT II deficiency-as well as a global

mitochondrial defect. I have heard many metabolic myopathy stories from CPT

patients and others with McArdles, MADD, etc. Most have a life-long history

of exercise intolerance. Reading your story I am curious about other aspects

of your history, but feel free to not answer my questions if you're not

comfortable giving out more details. What I'd most like to know is at what

age your symptoms began and what you perceive to have triggered the onset of

symptoms. Also--what has led your doctors to conclude that your myopathy is

metabolic in nature and not of some other origin? Is it activity alone that

triggers symptoms or are there other factors involved? Does diet make any

difference in symptoms? Which foods help or hurt? Dietary response is often

one of the tip-offs that the muscle disorder is metabolic in origin.

Has anyone checked you for myoadenlyate deaminase deficiency? It is the most

common metabolic muscle disease. MADD occurs in every 1 in 50 individuals in

the general population and every 1 in 5 individuals is a carrier for one

mutation in the MAD gene. The symptoms of MADD are similar to those of

McArdle's disease and CPT II deficiency. However, not everyone with MADD is

symptomatic, making it one of the most puzzling disorders of exercise

intolerance. Source: http://www.spiralnotebook.org/cptplus/index.html

As far as the CK not always correlating with symptoms, I have heard this

from other MM patients. Here are two comments from CPT patients I have

interviewed:

40-something male:

" The muscle pain has always been the biggest deal to me. But it's so weird.

Sometimes I'll go in with serious cramps and my CK will be normal or 1,000

or 2,000-nothing like you feel. Then other times with the same pain it's

like 60,000. "

30-something female:

" It is still very important to have CK (creatine kinase) levels checked

during an attack to make sure the numbers are not too high. For me 600 feels

like 60,000. I really can not feel the difference. "

In our pain survey of 57 CPT patients, we looked at the correlation of pain

levels with CK elevation. Here are the results:

ATTACKS OF MUSCLE PAIN WITH NORMAL LEVELS OF CREATINE KINASE

Of the 34 patients who have creatine kinase (CK) measured regularly, 20

reported attacks of muscle pain in which CK remains normal. 14 of the 20

patients said the level of pain is similar regardless of whether CK

elevates. However, 5 of the 20 patients said pain is more severe when CK

does elevate. One patient commented, " This [normal CK] is due to what I

think is neuroactivity of an oncoming episode. The muscle enzyme is not in

the blood yet. "

http://www.spiralnotebook.org/painsurveyresults/index.html

Here are more links to articles on MM that offer information about diagnosis

and testing options.

http://www.spiralnotebook.org/inthelongrun/index.html

http://www.spiralnotebook.org/batterynotincluded/index.html

http://www.mdausa.org/publications/Quest/q66metabolic.html

http://www.fodsupport.org/cpt2.htm

Hope this helps.

Barbara

_____

From: lkgforansers

Sent: Sunday, December 12, 2004 8:01 AM

To:

Subject: new member needing some help

Hi all,

I have been diagnosed with a " metabolic myopathy " muscle biopsy

was normal but my CPK levels are always all over the place.

anywhere from 250-2000. I understand that that isn't really that

high but high enough to cause severe symptoms some days for me. I

previously was an avid walker doing 3-4 miles a day, now I can

barely make it up a flight of stairs. I have a blood pyruvate level

of .o6 but my pyruvate kinase is normal. Just had a stress test

which they did a lactic acid draw at the end but don't have the

results yet. Seems like when my CK levels are high I am

assymptomatic, and as they come down is when I have my worst pain

and fatigue. I have seen a " neuromuscular spec " but I must have put

him off for he has never returned my call about the pyruvate. I

currently take 600mf CoQ10, other things he wanted me to try I was

told by a nephrology consult not to do since I have a solitary

kidney , previous hx kidney cancer

thoughts suggestions Ideas!!!!!! all welcome

thanks

mak

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.