I'm a newbie here.....need encouragment - Muscular Dystrophy Message Board

Snickers60 · 10-24-2008, 04:18 PM

am in the middle of being diagnosed (biopsy showed ragged red fibers) and being sent to Atlanta to one of the best genetics in the nation so I'm told.

I've been sickly all my life. Stroke like episode at aget 6. GI Problems all over the place, growing pains so bad I cried nightly, learning problems, migraines, and I always felt like I just was not trying hard enough. I also have fibro, mcs, arthritis and a dozen other things.

I'm really finding myself depressed after taking a 60th birthday cruise and winding up in a real crisis. I knew I was OVERDOING IT, but I could not imagine how awful the crash would be. I'm still recovering (got home Sept 7th) and I'm worried I'm not going to recover as I was.

I had just gotten better to do just a few things because all muscles had been LOCKED AND MUSH since the trip and a horrible, horrible virus hit me. Really bad.........it has taken me to the PIT. I have never ever cried so much and groaned loudly so much in my life. Guess it was a CNS thing.

I do not know what kind I have yet, but I know that taking coq10 is like giving me poisono and a death sentence of pain. I know that sounds weird, but it does that to me.

I have ALWAYS had extreme exercise intolerance and while it's good to finally know why one person can have so many health issues in one lifetime, I'm really depressed. I'm already in a scooter for going out. Have only about 2 hours on my legs ...pacing....a day and my pain is off the charts.

Does this sound like any of you ? I understand some folks 60-80 are just now being diagnosed with this awful illness.

Now my arms are mush and I must hush for I have no more strength to type. What a life !!!!!!!! I have never ever been a pity pot, always been a joy machine, but no longer. I'm just in hades with this suffering. I feel like I'm in a POW TORTURE CAMP. I'm shut in, with no life, and don't even feel like seeing family, who always just says: BUT YOU LOOK SO GOOD ! Then I want to play in traffic.....

Hope you appreciate my humor.

BLESSINGS AND HEALTH TO ALL, SNICKERS60

Snickers60 · 10-24-2008, 04:45 PM

OK, I've been so sick, I didn't realize I had already posted some of this, but I did not get a response there either.

Anyone here dealing with Mito ?

Madalot · 10-25-2008, 08:21 AM

Hi Snickers --

You're not alone and give it a few days and you'll have quite a few people posting to support you! Sometimes it takes a few days --

I'm sorry you have been so sick and feeling so awful. There's no doubt that MD is a tough thing to handle. I know for me, it was good to get a diagnosis of a disease rather than what I had been accused of all my life -- laziness. But with the disease progressing, that "joy" has definitely faded.

The way I cope is to try to keep my sense of humor and while it's not always possible, I just try not to let this get me down too much. We cope and adapt, cope and adapt and just continue on. I find myself unable to do things I was able to do a few months ago, so I either stop doing them or usually, just find another way to do them. And I always make sure I set up my day so that I don't overdo (as much as possible anyway).

It's not easy and everyone here will agree with that. And sometimes no matter how hard you try, you will overdo it and pay a big price for it.

Keep the faith and keep posting -- we're all here to listen to you and support you.

Wallis86 · 10-25-2008, 08:48 AM

Hi Snickers,
This is the third time I tried to respond, so I might have to write more later... I have possible mito but haven't had the biopsy yet.

I was told I have dopa-responsive dystonia but the drugs have the complete opposite effect on my, and caused the dystonia to get so much worse that I was unable to care for myself. I stopped the meds but have not been able to walk or stand for 9 days now. I know two other mito patients with DRD secondary to mito. It is very common to have adverse reactions to meds with mito. I have had many of them!

I am 22 with a healthy identical twin, and suffer from severe uncontrollable hypoglycemia, seizures, myoclonus, occular migraine, GI problems, in addition to dystonia and neuropathy. Everything has progressed drastically in the past 6 months, although it started when I was 11.

It's been a tough few years, but the light at the end of the tunnel is approaching for me, in the form of the service dog I'll be receiving soon!
Wallis

COLOGAL · 10-25-2008, 08:16 PM

i'm sorry snickers. i know part of what you are going through. i also was the happiest person i knew my entire life. i always felt as if God liked me best because of the so many blessings he gave me. not only has my lgmd caused me pain and heart ache, it has changed who i was. i miss her (the person i was). i still try to minimize my struggles to all, as best i can. that gets harder and harder as my loved ones watch my decline. i hate to pity myself because actually i have had more joy in my life then any one should be allowed. i refuse to believe this is some sort of "dues". i just wanted you to know, you are not alone. before i found this health board, i felt so alone! sometimes my symtoms seemed "made up" to even me. i cry alot (ALOT!) when i'm alone. and i feel so guilty knowing i feel sorry for myself knowing others have it so much worse. but when i'm totally honest with myself, i am sad, even mad and scared. the thing that has helped me the most, has been this board. you, me, we aren't alone. just wanted you to know, i'm fairly new here myself, but it doesn't take long to realize we are not alone.
cologal (preveusly cologayle)