Charcot Marie-Tooth (CMT)

[jrnyc]

will send off a note to rohr as soon as i get a chance
and let her know folks are thinking of her...
not sure how often she is on her computer, but will send out email
today

jess...and Sparky

[Pooka1]

Oh Jess could you please give her my regards and tell her I miss her? I do think about her and wish she was posting.

Thanks so much.

[rohrer01]

I'm back and you guys are going to make me cry! It's so nice to have a community of strangers that are friends and care about what I'm going through.

I'm pretty sure that I was told that I don't have CMT. BUT, with the way my genetic counselor worded his e-mail to me, he led me to believe that this is what it was. I'm glad for Susie Bee that I started this thread. This can be in honor of her since now she knows WHY she's having the symptoms she is having. It helped her and she also knows where her scoliosis came from and that it's not idiopathic.

I do believe I have some kind of nerve degeneration. I have TERRIBLE nerve pain to put it mildly. I don't think my doctor can go up on the gabapentin. I'm taking 16,000mg a day. That's 400mg four times a day.

My eyes are being affected in that if I read or have to look at anything too long they fatigue and I get such blurred and double vision that I can't read or see the person or object clearly.

I have procrastinated severely about getting my NIH papers to my geneticist. I HAVE to get that out tomorrow. The trouble is, now I can't find them! They were on my night stand. I shredded all the referral papers for the second opinion doctor. My genetic counselor said there was no point in a second opinion. They really want to try for the NIH study. I hope I qualify and I hope I didn't accidentally shred them with my other papers! I'm supposed to give my genetic findings to my sister and my geneticist friend!

Thank you ALL for the well wishes. I has so much on my plate. I had to come up with some remodelling plans, find a contractor (not as easy as I thought as they are all too busy!), draw up plans or explain what I want done, get a construction loan from the bank, go to my endless doctor's appointments, buy a special window and paint (6 layers needed for outside exposure is what contractor wanted) stain the inside of the window and figure out which parts of the opening needed stain or paint. It really was confusing because of the window type I bought! Grrr

I fell in September as you all know. I'm still struggling with finding the right word to say in conversations. I think we all have that problem to a degree, but mine was really bad. My eyes were affected. But I'm recovering as you can see! But I'm still having a little trouble typing. It could be the disease or the fall, I don't know which.

So my assignment for the morning is to get on the NIH stuff, pronto! Well I have laundry to do, too! :-)

I missed you all too!
(((HUGS))) to all of you!
Rohrer01

[LindaRacine]

Hi...

It's good to hear from you. I'm really sorry that things have gotten so overwhelming. Take it one thing at a time, and be happy with each goal. Hope today is the day you find the papers.

Thanks for the update.

--Linda

[Pooka1]

Rohrer really nice hearing from you! Wow you are dealing with so much. Your spirits seem to be high.

I wish you well.

[rohrer01]

Thank you Linda and Sharon! Jess, I forgot to thank you for updating everyone for me and you, too, Linda! I will get my e-mail to certain people. I need people to talk to. I got royally bashed over Thanksgiving weekend by my sister. I didn't even talk about my scoliosis. I complained about a bladder infection that I had. ANY medical topic is sending her over the edge. I fell asleep for a few hours and was accused of overdosing on my pain meds or else my doctor was prescribing too much. The truth was, I stayed up all night to get a couple more layers of paint on that window project. I got done at 5:30am and we had to get up at 6:00am! I was literally exhausted. It was a horrible weekend. I should have stayed home since half the family left after Thanksgiving anyway. We went down the following Friday to see my sister since she was staying the whole weekend. I am no longer "allowed" to talk about ANY medical problem with my family. Of course I can talk to my husband. But I'm sure he gets tire of the complaining, too. It's nice to have people that will listen!

No, I didn't even look for the papers. My lady friend came to visit and I stayed in bed all day as I usually do when she comes to visit. :-( The rest is nice, though. :-)

I hope you all have a good day tomorrow!

(((HUGS)))