Comments on: Coping with McArdle’s Injuries

By: Sue Burns

Sue Burns — Sun, 25 Apr 2010 00:06:23 +0000

I was diagnosed with McArdle’s Disease in 2006 after years of absolutely know forever that something was wrong with me and that I wasn’t “normal”. My doctor just did not believe me, even having surgery on my leg for a compartment sysdrome. The muscle swelled beyond the capacity of the facia and compressed the nerve that was responsible for lifting my foot, so I had foot drop until (fortunately) the nerve regenerated and I could lift my foot again!

I find that it tends to isolate me in that I cannot participate in most physical activities, which is a big part of life for lots of people. But at least now knowing, you can explain to people why you are such a “slow poke”. I found lots of people impatient about it as they think you are just lazy.

Anyway, it is great to know what is wrong with you!

I take the recommended creatine and vitB6 and find that water exercises are a great workout for me and very effective.

Best of luck to everyone.

Sue

By: Manuel Rodrigues

Manuel Rodrigues — Sat, 17 Apr 2010 22:59:13 +0000

I live all my life eith mcardle’s desease, but I just find out last week after so many teste, ben treten almost all my life for depression and I kep tell my douctor this not my problem, I have miserebel life special at work

By: Andrew Wakelin

Andrew Wakelin — Mon, 08 Mar 2010 12:36:38 +0000

To EB McCall. Actually it is the other way around. In McArdle’s we have glycogen in our muscles, what we lack is the enzyme (myophosphorylase) to convert that stored glycogen into glucose to use for energy. Our problem is not that we run out of muscle glycogen, but that we can’t utilise what we have got.

By: Lee Clendennen

Lee Clendennen — Sun, 28 Feb 2010 19:26:39 +0000

I am 70 years old and was diagnosed with McArdles at age 65. I have been diagnosed withso many different diseases during my life it is unreal. I have suffered with extreme exhaustion all my life. My father said i was just pain lazy because i could not keep up with him walking. My P.E. coach in high school would make me try to race the other guys. When I would have to stop he would laugh at me and tell the others to take a good look at a lazy bum.
My family doctor sent mr to neurologist five years ago. The neurologist had a mussle biopsy, two weeks later he called and told me what I have. The biopsy was sent to Baylor Medical Center in Houston. iwas sent to a specialist there that was supposed to know all about McArdles. To sy the least he did not impress me, told the sad story no cure and no releif.
I am happy to have found the site, if anyone knows of something helps please post it here. I have found that a coke a cola kelps, but I beleive I will try sugar in a hot drink.

By: Jim Ottesen

Jim Ottesen — Sun, 17 Jan 2010 03:00:05 +0000

Sherri,

Is your doctor a neurologist? It is not unusual to have abnormal
liver enzymes with McArdle’s Disease, but each reading needs to be
carefully reviewed as to how high and why. Often, you need the advice
of a good internist and a neurologist. First, I suggest you find out
how high is your CK and start a chart to investigate your readings
over a period of time and your activity before the readings to find
out what you are doing to aggravate the reading. Second, I would suggest
you ask your doctor for a prescription for “Hemasticks” so you can test
your urine for blood when you have a lot of pain or contractures. If
a “too high” reading, you need to have a blood test (for CK, etc.)and
a urine test (for blood and protein). If things look bad, you need a
consult with a nephrologist to protect against kidney failure. What
is your highest CK reading and what was suggested by your doctor. Too
often, you must push your doctor for information, but you deserve the
facts. Please let us know what happens. Best wishes to you. Jim

By: E.B.McCall

E.B.McCall — Sat, 16 Jan 2010 16:15:23 +0000

Obviously it is better to take the sugar or glucose before undertaking exercise,and we can conclude that it is not a killer disease since I am still around at 83!However my condition physically is exacerbated by lumbar stenosis[narrowing of the spinal column]probably caused by disk protusions brought on by 62 years of golf.That cannot be treated since one attempt at surgery was a total failure.My mobility is now severely restricted,but not because of McArdle.Incidentally I measure my blood sugar myself to ensure I don’t overdo the sugar/glucose intake.

By: E.B.McCall

E.B.McCall — Sat, 16 Jan 2010 16:01:14 +0000

Both my late sister and I suffered from McArdle’s syndrome from age 5,and at 83 I still do.Prolonged exercise on an empty stomach always precipitated my attacks,and still does,and if exercise is contiued my urine becomes a dark brown in colour.My understanding is that the medics.call this myoglobinuria,and is indicativeof the muscles having run out of glycogen,their energy fuel.Apparently we sufferers lack an enzyme that enables us to store glycogen in the muscles.The only treatment recommended is sugar in a hot drink,or better,chewing glucose.

By: Brenda Krushnisky

Brenda Krushnisky — Fri, 08 Jan 2010 18:03:53 +0000

It is nice to see how far McArdles information have progressed since I was diagnosed 9 years ago at age 36. I had issues all my life with energy and strength and like the others was called lazy. After several episodes of positive myoglobin in my urine which produces the dark colour, and several very painful muscle cramps and breakdown, I was finally diagnosed after a positive muscle biopsy. 3 years later, I was diagnosed with Type 1 Diabetes, what a surprise, it has made the McArdles so much harder to manage, as we all know the main source of fuel for diabetes is carbs??? I guess I am a bit of freak in the medical field. Managing two extremely difficult diseases has frustrated me to no end, but each day is a new day and I am for the most part up to the challenge. I have found it so much harder in the summer months for McArdles, I can hardly walk down the stairs when it is really hot, I much prefer the winter. Coincidently, I also found out that in Canada the majority of McArdles cases are found in Newfoundland, Quebec, and New Brunswick. If anyone has anything else to add to this, please do so. Thank you so much for this website and FB, it is really exciting!

By: Sherri Brewer

Sherri Brewer — Mon, 16 Nov 2009 23:14:38 +0000

I am 38 yrs old and have McArdles. I found out when I was 16 yrs old. I have had dark urine 5 times now and my leg muscles are weak and still sore.My last episode was Nov.7 -09. It is still hard to walk and the tops of my thighs are still tight. The Dr. said now my liver function is abnormal.It is taking me alot longer to “heal” this time. Thank you for the new site.