@Jim Ottesen
Adrienne,
It sounds like you do have a neurological problem so we should
start with a neurologist – have you been to one yet? Regular
doctors are essentially clueless when it comes to a McArdle’s Disease diagnosis. You should ask your new doctor to check your CPK level
soon after you have a serious pain problem and while he’s looking at
blood levels check your kidney function, liver function, and Vitamin D level. Your urine must also be checked for blood and protein and the
usual checkd for bacteria, etc. Do you presently have any of the results of these tests from the past? How long have you had this pain problem. Is it only the extremities? Do you have any of the major heath problems (diabetes, high blood pressure, overweight)? Any family
member have the same symptoms. Is there a geneticist in your area?
Please get back with me with some answers as we can put you on the right path.

Best regards,

Jim

I am 72 and was diagnosed two years ago. I find that you can avoid
most pains by doing nothing which causes more than a five second period
of holding, pushing, lifting or straining in any way. That is the magic
number. Clearly, walking or swimming can also cause problems if done to
excess. Once you have the pain, drink lots of fluids, take Tylenol (if
doctor approved, do a Hemastix check and see your doctor if your reading
is too high. Often, in my case, gentle stretching and massage seem to work most of the time. Always remember, if the pain is too great for too long, your kidneys could be affected and your doctor needs to do a
blood check for CPK and kidney function and a urine test for blood and
protein. I encourage mild exercise during your lifetime, but no weight
lifting and no straining for more than the five seconds I mentioned.

I hope this helps.

Good luck and God bless.

Jim

You will have better luck finding a seasoned neurologist that
has some experience with the bad “M.” He or she will have better luck
by doing a consult with the experts after your person has more facts.
Now, please listen to me, stop the heavy stuff, the lifting, and the
stressing. You do not want to damage your kidneys! Before you hire
your neurologist, ask him if he has experience with “M”, if he has access to a facility that can perform the ischemic forearm test and
the biopsy of your thigh to test for “M” and other possibilities.
The ball is back in your court – let’s get some answers! Let us hear
how you progress. Jim Ottesen
a hospital equipped to do the ischemic forearm test

I am so sorry to hear of the problems you and your daughter are suffering. First, both of you need a good neurologist to look
at the risks of fibromyalgia, McArdle’s Disease and other possibilities.
Your neurologist must be seasoned and experienced in the identification
of the illnesses I have mentioned. He or she must be able to perform
the ischemic forearm test and access to a facility that has the expertise to do a biopsy if needed. In the meantime, Have your doctor
request a complete blood chemical profile with CPK a must. Your
daughter should also let this be a starting point. When all this is
done, make sure you get a copy of all the tests the “others” have done to date – your neurologist will need these numbers. Let us know how
things go, but don’t stop until you have an answer. You and your daughter should not continue to suffer – life is too short! But, you
must lead the way. Good luck. Jim Ottesen