symptoms worsening

[Guest guest]

Helen,

I think I know what you are talking about, because

I think I am experiencing the same thing. My

episodes of weakness are more frequent and worse

(after they had subsided for a time). Also, when

the weakness came back, it brought along the weird

twitchings.

Colleen

[Guest guest]

Colleen and Helen,

I'm going through the same things as well. It

seems ever since my car accident last year I've

been going down hill and fast. I'm sorry to hear

that you guys are dealing with too. Let's pray

we all reach a plateau soon!

/CO

[Guest guest]

I only have my Aunt Pearl's life to fall back on

but I can tell you that she was very different

than I am. She was in a very bad way from the

beginning. However, she went downhill fast during

the last years of her life. I did not have any

major symptoms that would have been diagnosed at

an early age unless we had known what we were

dealing with. Still am not sure. Seems that now

when I have a bad time the symptoms are worse and

some things, like the fatigue, are just not going

away at all. Used to be I would be fatigued for a

period of time and then it would go away. Now, I

have to plan watering my plants during the school

year as all my energy has to be for my classroom

duties. Can't retire because I need insurance and

I truly feel a little better when I am moving

around. Seems to keep my legs feeling better. Not

so jumpy and the tingle is not as bad. Also helps

to have so much to do that I don't have time to

think about all this. The burning in my feet and

hands brings on another set of problems. I have

been diagnosed with Erythromelalgia and Raynauds

Phenomenon in addition to many other things. Heat,

cold are things that bring on symptoms. I am not

sure what will be left of these other things when

I get a true diagnosis. I seem to be reading that

all the symptoms fall under CMT. Chronic Fatigue,

Fibromyalgia, EM, Rays, etc. all have symtoms that

could be part of CMT. Very confusing. For me the

worse thing is the fatigue. I guess I could cope

much better if I didn't feel like such a dishrag

all the time.

Helen - Sorry to grouse so early in the morning

but it was one of those nights when laying down

was not a good thing.