KSS-wendy

[Guest guest]

In a message dated 2/13/00 5:21:33 AM, Mitoonelist writes:

>Seems like all that I hear is that both Pearson's and KSS are

>

>progressive, deteriorating diseases and there is no treatment for them.

Hi ,

My family presents like a KSS/MELAS overlap. There is no cure for KS, but I

do believe there is treatment. My mother has heart failure, I have early

stage heart failure, and my youngest son has a variety of cardiac related

complications both autonomic caused as well as his heart is directly affected

(in addition to other typical KS presentation difficulties). My mother

struggles with her heart daily, but treatment was slow in coming for her and

I get WAY concerned as she isn't on carnitor. My cardiac deterioration has

arrested for now (bad choice of words when speaking of the heart!) secondary

to treatment and I am doing better in that regard than I was several years

ago. I must admit though that I did not find proper care locally and the

" helping " physician is long distance, I've never seen him, and he has done

more for me than any doc I ever saw!! He has reviewed test results and I

have faxed out to him my EKG, etc. I still have times when I get way too

tacky and times when I feel fluid moving around when I breathe and I have a

mild cough as a result of, but I am still doing so much better. I haven't

had an EKG in several years because I am convinced it would have to be

better, and even if I did, I'm not going from doc to doc to see what more

they can do as it seems to be a dead end locally and I would spend a fortune

looking for that rare doc who could help me further. I was told, more than

once, that if my cardiac problems were mito caused, there was nothing they

could do for me and they proceeded to treat symptoms only.

I understand your frustration with dead end appointments.......completely.

the same thing was happening with my retinal bleed, so I quit! If I have a

serious hemorrhage in that eye, I will ask my son's opthamologist to see me

since he is bright enough to treat logically and he is honest enough to tell

me if there is anything to be done or not. However your son is like my son

in that if he is to live, he must have that excellent care. I have already

sought out the best physicians for my son (with only one to be replaced with

someone better). Hang in there . I feel for you so much. We refused

to go from state to state and I have to hand it to you, I have no idea how

you have held up this long. We were determined to find the best in our area

and after over 7 years, we STILL have a few changes to make. Some times we

have gone for years with an inappropriate situation for our son, but once we

get the right doctor, we KNOW it is right and can rest assured in that

thought.

Cheri