I’m sorry to hear about your uncle. It is always difficult to lose those we love. My prayers have been with you.

God Bless,
Diane

My uncle passed away and I’ll be headed to Biloxi, MS. I should return
by Friday or Saturday.

I mention this so Diane and the other folks I talk to will know my
absence is temporary.

Have a great week!

Jim

Thanks again for the advice and support. I will indeed make certain that the physician and anesthesiologist are made aware of my condition well in advance of any surgery, along with the possibility of MH and the tourniquet issue. I will also find out what anesthesia was used on me for the last surgery I had. (I had done that with this past surgery too, bcause the anesthesia which had been used on me prior, made me quite nauseous) The result of this effort lead to a very easy recovery after the last anesthesia. Hopefully it will again.

At present, I am trying to get myself in shape before scheduling any surgery.(This is always a challenge for MD patients). I hope my efforts pay off, but at present I have had a couple of setbacks. I will try to consult with my PT about that.

Thank you again for your encouragement and friendship.
I will keep you informed of any progress…keeping a sense of humor and a positive attitude, along with prayer is most helpful.

God Bless you too, my friend,
Diane Gaasch

Frankly, I do not believe you will have a problem with the MH as long
as you put everyone on notice that you have McArdle’s Disease and should
be considered a high risk patient for certain anesthesia products and
if tourniques are used around muscles. Your surgeon needs to address
these issues with you at an early date to clear up any ambiguity that
might exist. If Dr. Slonim does not have a clear answer, we must be
cautious and bring the issue to the table with your doctor.
The safest bet is to stick with the same anesthesia used in your previous operations if that is possible.

I wish you a very successful surgery and a speedy recovery and I look
forward to getting good news from you as soon as “this” is behind us.
God be with you. Your friend, Jim

I did forget to tell you that I do know about Malignant Hyperthermia from Kathryn (on one of the other sites). I have had several surgeries in the past, but fortunately have never had a problem with this. Being tourniqueted seems to be of concern. I had thought that the no tourniqueting applied to when exercising your muscles, but not for surgery, unless, of course they are exercising the muscle during surgery. Any thoughts on that? I am not a patient of Dr. Slonim’s, but have spoken with him on the phone. Being unfamiliar with knee replacement surgery he was unsure of the tourniquet issue. Always lots to be learned with this disease, isn’t there?

Thanks again, for your concern not only for me, but the others who visit this site for reassurance and info.

Blessings,
Diane Gaasch

It is heartwarming to me to hear your kind comments. Those of us who
live every day with McArdle’s need to help each other as it often seems
few others can understand our issues.

I have had great results from a physical therapist and a personal trainer to help me deal with my atrophy and to keep me out of a
wheelchair in the future. I know your results will be good as well,
but keep your eye on your CK and don’t push too hard.

Vitamins are critical to the “M” patient! Like you, I take B-12, B-6
and Vitamin D every day. I can also tell the difference. I also
take 500mg of L-Carnitine, a good greens formula and 20 – 30 grams
of protein to help my stamina.

Best wishes to you with your surgery and keep up the faith. We “M”
folks control our “M” – we refuse to let it control us!

God bless you.

Jim

You are very kind. Thank you for your “well wishes”. I am not anticipating any immediate surgery, but am preparing since it probably won’t be simple for me as a McArdle’s patient. I have found an excellent Doctor in St Louis who does a total knee replacement without cutting the quad muscle. I am thinking of calling or going to see him. He supposedly has excellent results.
I have some other issues I need to resolve right now with my “good knee” which is going bad also and causing some other problems. I’m going to make an appointment with my physical therapist to see if she can reccommend a “course of action”. It is difficult to know which to treat first!!

On another note, I appreciate the continuing support that you and others give on this website. I haven’t given my history, but I can relate to all I read…I too have the same issues, and will go into that later. One point…for fatigue issues, the doctor found I was dangerously low in Vitamin D and also B12. I thought the fatigue I was experiencing was from MD, but the doctor wanted to check the VitD levels, and I suggested B12. I am on a very large prescription dose of VitD, and it has helped…also sublingual B12 (2500 mcg) every day. If I stop either of these, my readings go down, and my fatigue goes up. Just some food for thought for fatigue issues. It may be worth a check.

Blessings to all,
Diane Gaasch

Sorry to hear of your need for surgery. While you may already
aware of the risk of maligant hyperthermia from some anesthesias, I just wanted to suggest that your surgeon,
the anesthesiologist, and the hospital be on notice that as a
McArdle’s Disease patient, you require special care and attention
to avoid a bad outcome.
I can’t offer help on the specifics of the surgery or the specific
muscles involved, but wish you the very best of success. Please let
us know how things go for you. Jim