Dawn Zalud

I mostly just want to knod is if my neurologist was barking me up the correct tree and if anyone else had similar symptoms as I do.

Over the years I’ve been just living. My grandmother put me on various forms of Vitamins, I was prescribed L-Carnatine, but then I started to smell fishy, and urinate a lot so I stopped that as that was evidence that I had enough. I really couldn’t tell the difference.

My life has changed in the past couple of months and I have been in more control of what I am eating. I’ve lost weight. I never really had any issues of bladders other than a bladder infection once every other year.

I’ve been working more on walking. My grandmother would find excuses on discouraging me from excersizing over the hears by making up various scare tactics not even talking about my MD at all.

I do have the severe cramping if I go too far. I always say “I can’t spoil my desert” as I tend to usually have something sugary before I eat, especially if I’m tired.

I am still trying to put pieces together, I haven’t go to MDA clinic in a few years and I plan to go back and gather more information.

I was a “Floppy Baby” but I didn’t have any cardiac problems, I wasn’t strong enough to breast feed, so I drank from a bottle.. I didn’t start walking on my feet until I was 2 years old. I walked on my knees prior then.

I did go for physical therapy during Pre K. They worked on me walking with inclines and stairs and tried to help me with balencing. Yeah thats another thing I can’t balence worth a darn.

And swimming? I can pretty much only do the dead man’s float. Otherwise I walk pretty well at the bottom of the pool. I pretty much use a waist float.

My heart is fine, I started taking atenolol after age 21 due to some rhythm issues and have attempted to stop all caffine intakes. Though it’s really hard to stop chocolate. Though the heart thing has been better due to me now being in a lower stress environment.

I have also noticed when I’m more stressed, I don’t really want to eat. Thus the muscle cramps do increase.

But now I’m eatting better. More Grains, More proteins, and sugars as needed. And celebrate once in a while with a girly beer and a amouretto sour.

I feel more at ease at reproducing one day in my life. I’m actually looking forward to the idea of feeling better and to knowing that my child probably won’t go through what I have.

Symptoms:

My hands are really good at playing violin and guitar and knitting. Though if they are cold and I imediately start doing something I get cramps. If I play music for a long period of time my hands get really hot like a fever.

My Hips hate me. I hate them to sometimes especially when I want to get up. They are usually the first leg muscles to cramp. I usually have my boyfriend pull me up out of chairs. And well.. curses to those stuborn muscles..

If it isn’t my hips its my knees. I refuse to crouch on my knees. Or my legs hurt like … well you know.. PG..

But yessss… If theres anyone who would like to talk or chat with me just to relate and defer disabilities from infancy even, that would be great. pceflwrgrl at yahoo.com is my email address, I am on facebook just give me a message that you want to talk about McArdles with me. And I have various Instant messengers as I’m currently not working I’m pretty much free to chat during the week days.

I’m working on my own personal excersize regime. I was taken out of phys ed as a kid so i wouldn’t “Ruin my muscles” so I’m working with my boyfriend on what stretches to do to make my “second wind” and I’m going to start walking 2 miles a day 4 days a week. I’ll even cary a Granola bar with me and I’ll be happy! Because I want to be as top as physical shape as I can.

If it all works out and I have no cramps after doing that for a while, I’m going to invest in a eliptical bike and I’m going to turn on my pilates video and do two minutes more than I did the last time I did it. (Trust me, I did two minutes then I watched the rest and the calories melted away, I swear to it! I Lost 2 lbs just doing that..)

I don’t know for anyone else, but I gain weight pretty fast, but it melts away for me pretty fast too. Though right now i’m 5′5″ and I’m stuck at 141 lbs. I did lose 15 lbs in a month though, that was supposed to be my resolution for the year.

But I most of all just want to be stronger. I want to one day have a child and be able to hold it and carry it whenever it wants to be loved.

And to proudly walk my own dog every day!!

thanks
greg

I have other health conditions (type 2 diabetes, obese, severe hypertension, sleep apnea) that make my activities of daily living difficult.

I am currently working on disability due to my inability to function on a daily basis.

Even getting dressed in the morning is difficult. I feel to bad to even try to exercise. My CK was 587 which is better than it was years ago. It was 12000+ when I had my muscle biopsy.

Is there any other individuals out there that have had to file for disability based on McArdles and other health issues?

Thanks.

Hi Brenda,
I, too, have the pre-diabetes problem and McArdle’s. I do the best I can to avoid sugar, reduce carbs and add protein, exercise as often as possible, take B-6 (to 100mg), a strong multi-vitamin (Theragran M),
20 to 30 grams of whey or egg protein, a good greens formula and lots
of water. If one has a weight issue, try to get rid of the problem. Avoid muscle stress, focus on cardiovascular exercise, have your urine
and CK checked any time you feel overly tired or feel too much muscle
pain or at least twice a year and make sure you have an excellent internist for follow-up.
Diabetes is your biggest problem – do all you can to beat back that
problem. “M” is a big pain, but if you protect your muscles, you protect
your kidneys. Don’t lift heavey “stuff” and don’t overdo anything.
I hope this helps you out. Let me know if I can do more.
Pray for the folks in Haiti.
God bless,
Jim

Hello Jim,
My name is Brenda and I am a 45 year old female from Ontario, Canada. I was diagnosed with McArdles 9 years ago, and 6 years ago Type 1 Diabetes. The diabetes has sure made the McArdles much harder to manage as they are both battling each other, one cannot use the carbs, the other needs the carbs. Have you encountered any other patients with both diseases such as mine together? I ended up in emergency with a very, very high sugar level 6 years ago, almost to the diabetic ketoacidosis stage, and a intern was very excited to talk to me about the McArdles, he has just read an article in the New England Journal of Medicine. I guess I am a bit of a freak of nature to have two completely different channeling diseases which both affect the pancreas. I would love to hear back from you or anyone else who is a double disease sufferer such as myself. Thank you.