Re: Anne Marie- Need Help/Suggestions Please

[Guest guest]

I don't know what all you are dealing with, but as an

encouragement, I have been that weak befor and unable to walk around

for weeks at a time. In fact for several years I was very run down,

limped everywhere due to lack of energy and never would go out of the

home unless absolutely necessary. When I did go out I was so

exhausted the muscle pains were horrible. The encouraging thing is

that presently I am actually BETTER than I used to be by a long

shot! I get run down easily and have to rest often and limit my

trips out of the house but noone would ever know anything was wrong

with me most of the time. I know Mito can be terminal, but I have

found that it can also be up and down in symptoms as well. I had

several REAL BAD years and for some reaon now I am doing better than

before. So...you may be scared or worried about how you will be

tomorrow or next year, but always remember that it doesn't have to go

down only. Try to take care of yourself and get as much rest as your

body needs (as it sounds like you are doing).

Darla

> Hi all,

> I know I have been quiet on here lately as many topics I

> can't relate to yet. But this past weekend I had my first

> major " crash " . It was so bad that I could barely walk and

> I am still pretty physically fit (walk 1-3 mi. or swim at least

> 3-5 times a week). So I was quite shocked that this

> happened. I know things have been regressing quite

> rapidly lately for my body but wasn't sure how to slow or

> stop it. I saw Dr. Gropman this summer in DC and she wants

> more testing so I don't have a whole lot of answers yet. I have

> been trying to reach the doc this week but we have played phone

tag.

> I am on a few things with the cocktail (coQ, carnitor, b vit. and

> lypoic acid).

> I wasn't sure if I needed to increase these during a crash, I know

> I have to sleep and I have been 12-20 hours a day for the past

> 4 days....and feeling somewhat better, just not anywhere near

> normal. How long does it take to recuperate? What else can

> I do to help my body ? I guess one of the fears is that I will

> continue to decline so rapidly that I will lose my mobility

> in the near future and my independence with it. The biggest

> fear is the thought of this being terminal and becuz things are

> deteriorating so rapidly .... how much longer will I have left?

> I am really struggling now to keep my DH calm and reassure

> him things are going to be OK... but I am having a hard time

> believing it myself. You all have been so supportive and

> informative this past year since Joe was diagnosed. I don't

> know what I would do without you all.

> Thanks again for everything,

> <>AnnMarie L. - Complex IV

> Married to my best friend Rick, Mom of (15), (12),

Cassandra

> (6) and

> Joe (4 1/2) - complex IV, lactic acidosis, CP,tethered chord

syndrome,

> dysautonomia, and

> a smile that never quits ?