Welcome New Members

[Guest guest]

I'm not sure of your name, so this isn't addressed to anyone.

Give yourself time to grieve the loss of your health. Everyone does

this in their own time and in their own way. It is a continuing state

of greiving as we loose more function or develope new symptoms.

I started using the scooters in the stores because there was no other

way to get my groceries and as a single mom I had to feed my boys. I

then got my own scooter. That was 12-13 years ago. I can still walk

around the house from chair to chair and can often walk into a

restaurant or someone's house with my crutch - no steps to climb.

I feel that there are ways of dealing with the pain for many of us. I

hurt when I walk, but know that sitting down will probably make it go

away, although not always. I am being helped with medications to

reduce the muscle cramping and myoclonus and know there are meds to

help with the pain of neuropathy when I need it. The thing that has

helped me most is limiting the kind of activity, resting when needed

and making sure my electrolytes are in balance. I also take many

supplements which I feel has helped me. We are not all the same, but

some symptoms can usually be controlled or lessened.

laurie

> I want to welcome Wanda who like me is a new member. Also thank you

> all for your help about SSI information. Well, since I have been

> diagnosed with Mitochondrial disease by phone, I went to see my neuro.

> doctor today. He told me I have MELAS syndrome. We talked. And alot of

> his answers to my questions like pain, breathing, etc. went with a

> reply like, not much we can do. We could try a few things. Or I have

> no answer for that. And I had informed him how do I react to this

> disease, do I keep pushing when the pain begins, or keep trying to

> ignore my symptoms till I can't move. Well he told me the state that I

> am in, my body is in, is more like it. That I should do basically

> nothing, because it hurts almost immediately upon movement and that I

> should now start using a wheel chair or scooter to get around. I left

> there feeling very blue. I avoided giving in to this disease the best

> I could. Fought it all the way. It was becoming harder and harder. He

> told me I was only doing more harm. We are working on some other

> issues and which way to go. But I guess I have to give in now and go

> the wheelchair route. How did most of you come about accepting this

> disease and what it has done to you?

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>