Okay Everyone -- I Need to Ask a Question - Muscular Dystrophy Message Board

Madalot · 04-02-2009, 08:41 AM

Most of us have been diagnosed (or have a family member with) some form of Muscular Dystrophy. As I've stated several times, my diagnosis was almost liberating for me because it was no longer "I'm lazy" or "I'm just out of shape." There was a medical reason for my weakness.

Now here's my question: At what point do you need to ask yourself "is this just a part of the MD or is something else going on?"

I am so fatigued all the time and generally just feel so awful. It used to be that I could do the grocery shopping IF I didn't do laundry the same day. Now, I find I can barely get into my car and grocery shopping (by myself) is just too scary and risky. Some nights, I am so weak and tired (they seem to go hand in hand) that I just cannot fix dinner. Yet, I've done almost nothing all day. But it doesn't matter if I did something or not, I'm still just as tired. The only big difference I can really see is that if I did something (like go to the store or laundry -- or shopping -- OMG) my legs are so sore I can hardly stand it.

And I've got my powerchair, but I don't use it at home because I think it's important to keep walking as much as possible. And since my bathroom is at the opposite end of the house from where I spend all my time, I walk back and forth across the house numerous times every day. But now, I find I must use the rollator because I am so weak and tired.

And if I do spend several hours in my powerchair, I can barely use my legs at all when I get out of it. It's really very frightening.

I'm just not sure this is supposed to be a part of the MD -- at least to this degree.

I'm just wondering if it's possible that I keep blaming the MD for all of this when maybe there's something else going on. I have my yearly with my neurologist in June, but I'm wondering if I should be more proactive in asking about this. I'm just not sure this is a normal or expected progression to this MD.

Thoughts??? Thanks guys. It's really nice to be able to talk about this with people that 100%, truly get it. Not many people do.

michigani · 04-03-2009, 09:03 AM

Hey Kathy!
I sometimes wonder that myself, but I see my family doctor 1-2 times a year and my MD doctor 1-2 times a year. My physicals all seem fine except for the MD.

I get extremely tired now. I typically sleep from 11pm-8am. That's 9 hours! I used to sleep 6 hrs. And I often take a nap at 3pm for half an hour. Here's my take on the fatigue thing.......Muscle cells store energy. As the MD progresses, the muscle cells get replaced with fat. My legs aren't really any thinner than 10 years ago but I know if I saw an MRI section of my thighs they would look like really fatty-marbled round steaks. Seriously. A healthy person's would look like all red muscle with a thin layer of white under the skin. I probably have 1/3 the muscle to store energy now.

This fact causes the tremendous fatigue. There's nowhere to store energy any more. Combined with the weakness of the MD, it's a bad combination!

With me, CoQ10 seems to help. CoQ10 makes your muscle cells soak up energy like a sponge from the food you eat. Unfortunately it's expensive. The FDA is currently looking into allowing Rx strength CoQ10 so if you have insurance that might help. I take 400mg/day which costs about $0.90/day. I buy it 2-for-1, mail order from CVS or Walgreen's.

Of course you should always work with your primary doctor to rule out any other health issues. Unfortunately, MD patients aren't immune from other health problems. Take care.

Mark

Madalot · 04-03-2009, 12:37 PM

Hey Mark --

Thanks for replying. What you say makes sense. And this could very well just be the natural progression of the MD.

Typically, I see my regular physician anywhere from 2-4 times a year and my MD doc once a year. I have so many issues (blood pressure, cholesterol, acid reflux, borderline diabetes) so I see my regular doctor regulary for monitoring on those things.

It just seems that in the last 6-12 months, I have felt so much more weak and tired. It wasn't good before, but now it just seems so bad. And I just don't know if it's to be expected OR if something else is going on in conjunction with the MD.

I called my neurologist today and I have an appointment to see him on April 21. Based on what I told his assistant, she felt that he needed to examine me and evaluate my increased problems to see if we need to look a little further into what's happening.

I was putting off doing it because last year was such a bad year for me. I had that gallbladder problem and emergency surgery, got the flu while recovering from that, then got pneumonia over the summer, then had to have surgery in December for female issues. I feel like I've been through the ringer as it is, but I feel just so weak and tired.

I finally broke down about a month ago and bought a power lift chair. Only chair/sofa in the house I can out of. I'm glad I have it, but it's a classic example of how things have progressed.

Oh well, at least I took a step in the right direction and called my MD doc.