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Old 10-24-2008, 03:18 PM   #1
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Unhappy I'm a newbie here.....need encouragment

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

 
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Old 10-24-2008, 03:45 PM   #2
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Re: I'm a newbie here.....need encouragment

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 ?

 
Old 10-25-2008, 07:21 AM   #3
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Re: I'm a newbie here.....need encouragment

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.

 
Old 10-25-2008, 07:48 AM   #4
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Re: I'm a newbie here.....need encouragment

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

 
Old 10-25-2008, 07:16 PM   #5
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Re: I'm a newbie here.....need encouragment

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)

 
Old 10-28-2008, 07:47 AM   #6
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Re: I'm a newbie here.....need encouragment

Hey Snickers,
This is a wonderful board to come to and find support.
My son just turned 6 years old last week and he has a type of limb girdle md, he was diagnosed at 3 and now we have gotten him into a clinical study to determine just exactly which type he has, hopefully. I will admit though, I am nervous that he will be diagnosed when one of the worse types, just because of his physical appearance but I am praying for a "lighter" case. So sorry you are feeling so bad and having so many problems, I have a "pity party" quite often myself over my sons condition. Hopefully soon they will get to the bottom of things for you. And yes, Madalot is right, we go through the cope and dapt thing constantly too. For us, some days are better than others, having to "relearn" the facts about this terrible disease. Come here as often as you like to just vent if needed!!! And I do understand the humor you put at the end of your message. People tell me all the time how good my son looks, like they can tell alot about his condition in a few minutes. Yeah, he looks good just standing there, but when he tries to run or climb steps, they don't witness the agony I see!!! The only thing I would change about your comment on the traffic, is I always want THEM to go play in the traffic!!! ha ha Hope all of our comments on here helps you in some way
Hope you have a better and great day
Lori

 
Old 10-28-2008, 11:11 AM   #7
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Re: I'm a newbie here.....need encouragment

Thank you all sooooo much for responding. I'm having a real hard time typing today (my quota is up) but did want to say THANK YOU SO MUCH. Look forward to talking with you guys more. Sorry it's about THIS MISERY.

 
Old 10-28-2008, 04:12 PM   #8
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Re: I'm a newbie here.....need encouragment

Snickers, I am so sorry to hear how down you are. I am in my late 60's and only recently have developed the pain and leg weakness. Previous to that, I was having difficulty with steps and getting up from a chair. When the weakness started, I went to my family doctor and have seen a neurologist. My tests have been negative so far, and I am waiting for a muscle biopsy. My mother had the same thing, so I pretty well know what to expect. I went on a cruise this summer and all went well, but had to get a push to get on the tour bus. I do see that there are things going on that hopefully will help all of us in the near future. That is what we have to hope for to keep us going. I do get down a lot and know you must be having a difficult time. There must be a silver lining in that cloud.

 
Old 10-29-2008, 06:49 AM   #9
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Re: I'm a newbie here.....need encouragment

Snickers,

Ditto on what everyone else has said to you. Post here anytime and vent all you want. We all understand. Venting will not make us think you are a negative person. I've found that MD patients are some of the most optimistic, brave, happy people around.......way more than many healthy folks. We all have bad days and bad weeks....we're here to listen and help.

Hope you have a good day today,

Mark

 
Old 10-29-2008, 07:17 AM   #10
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Re: I'm a newbie here.....need encouragment

Thank you Mark and All. You are already a BLESSING TO ME.

My family (very large) has been getting a FAMILY HEALTH HISTORY together for me for my Doc and the Bio-genetics doc in Atlanta.

WOW..............leg pain all over the place, kidney infections galore, drooping eyelids in a 68 year old aunt right now, cataracts and glaumoca out the wazoo, and my grandmother had severe "UNEXPLAINED WEAK SPELLS THAT TOOK HER TO BED for weeks at a time" with '9' children in the house. She also sat and rubbed her legs and arms with pain and cramps.

My mother does NOT have muscle weakness, but does have heart problems which I read is usually the case for a carrier without the disease. AMAZING. When they sent me the list and I saw sooooooooo much of the same, I was in shock, but not.

I'm hoping some of them will also want to be tested. My two sisters seem to be OK, but brother has had some exhaustion periods and kidney problems, migraines, and glasses early. He also has had a lot of GI problems.

My muscles are feeling a llittle stronger, but it's like hubby says: seems all I have strength to do is : Sit, smile and look pretty. What wasted time. But it seems my muscles are sooooo weak at this point that overdoing only takes MINUTES, so I'm scared to death to do anything. I've suffered so much since the BIG CRASH (rhabdo) that I've been scared to move. Then I had that horrible FLU/BUG......please don't get it, worst in 60 years. It did some number on my muscles. Shoulders, arms, hands.

I am coming back some from that, but slowly. Am going to TRY and water walk , if even for 5 minutes, today. The hardest part is getting myself there and back. I'm just sooooooooo weak and fatigued, but have other issues I must water walk for.

Do any of you do any kind of PT ? Exercises ? Anything you can share that helps you ?

THANKS AGAIN for all your input and BLESSINGS and HEALTH TO ALL, Snickers

Last edited by Snickers60; 10-29-2008 at 07:19 AM.

 
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