Hi everyone at CMT!

General General CMT Discussion
1

I'm SK, and I'm happy to be here! For those who don't know me, I've been at Ben's Friends about 2 years. Though I don't have CMT, I do have Psoriatic Arthritis (spondylitis type), Sjogren's Syndrome, Rayanud's Phenomenon, Fibromyalgia, and many other related complications. Fully completing my profile is on my 'to do list'!

I have come in friendship to offer support! I can learn much about Charcot Marie Tooth on the net, but only you can teach me what it is really like.

We may not suffer exactly the same thing, but surely we all suffer, with good days, and bad, good Doctors and "Oh no, I have to go hunt down a better one"!

I joined BF at the Psoriatic Arthritis site, and after about 2 or 3 weeks was asked if I would be interested in moderating, I was honored, and accepted, I also joined Fibromyalgia not long after that, and was again asked to moderate after a few weeks, well, I had to think about that, but I accepted. I had become friends with the Mod from the Lupus site, when she read my profile, and found out my first dx was 'Overlap Syndrome', where you display symptoms of many different autoimmune diseases, but as yet do not have a full dx of any, though it is expected that you will. One of those was SLE, so I joined Lupus. Yet another great group of folks. This gal got pretty sick, seems they all did at the same time, she begged em to moderate, so I accepted.

Scott feared I would 'burn out' after a while and asked me to choose one! I chose Fibro because of the influx of so many teens, who were terrified. They had won my heart. This was my group of choice though I would still jump in and help if other groups got in a jam, and swing in to say hi or ask them a question.

This ended last Oct when my dear Mom fell down the stairs and broke her hip. Shortly after this, I had to resign my mod posts and do all that needed doing. Mom is doing much better after this very long ordeal, and when I came back, met dancermom who asked me to step back in, gave me some choices and we chose YOU. I asked her to put me where she and the members needed me most, and here I am. I hope to be deserving of your good company, as I feel you are deserving of a good place to come talk about things!

I look forward to getting to know you all, and am totally open to comments, concerns, questions!

Tell me, teach me!

Wishing you well,

SK

2

Thank you for being here, SK!

3

You're welcome! Thanks for having me!

4

Dear SK ;

I'm glad you joined BF, to find outmore abut this disease from a patients view point, instead of just a doctors point of view, on the internet. Doctors are great, but it's the patients who do the suffering, and this site gives us the chance to express our thoughts in an open forum.

I look forward to being your friend, and telling you more about my little corner of the C.M.T. world.

Jayme

5

Hello Jayme,

Thank you for your kindness! I look forward to being your friend as well, and hearing your story, comparing notes! I have a feeling that you are a good story teller! I like that, I come from a long line of them!

Hope it's a good day for you,

SK

6

Dear SK :

A day without leg pain is a very good day. My new neourologist just doesn't understand how one day I'm fine, and without pain, but the next day, the pain is excruciating. Such is my little piece of this heaven that is C.M.T. hey!!! whoever said this disease, or any disease for that matter, is fun to survive with.

Jayme

7

I'm glad you get some good days, Jayme.

8

Dancermom :

Thank the lor for pain-free days cause they don't come too often.

Jayme

9



Jayme Gulyas said:

Dear SK ;

It's funny, in a way, that on opening day of the baseball season, every year since I was sixten, no matter how the weather is, this stupid attack of my C.M.T. happens. Only now, within the last two years, the pain is exruciating, and only time will tell how long this attack of paralysis will last.

You wanted to learn more about C.M.T., well, now you're hearing from someone who has actually got the real deal.

Jayme

Jayme

10

Dear Jayme,

Thanks so much for responding! What a drag that your disease always comes to call on opening day! Surely it can never be a 'good time', but this is not exactly ideal! Would be nice if it could just by pass you and your opening day, huh? You know, when I was much younger, I used to think that life would get easier as the years went by. How wrong I was!

The Doctors seem to think there is more at work within me than the PsA, Sjogren's and Raynauds, because they send me for the brain MRI every time I go through these severe muscle attacks, where my entire body goes into a blood curdling scream of spasms, and leaves me feeling ripped to shreds, barely able to move for several days or more. There surely are symptoms of SLE and MS, but nothing conclusive enough to add to the list of confirmed.

I'm ready to learn anytime you are ready to write! Thank you!

Wishing you well,

SK