Well now my nuerologist has changed my treatment from the ivig infusion to Methotrexate. I’m worried because i have to drive to Texas for Christmas and and I just hope I dont have any bad side effects. Does anyone have any words of advice or is on it?Thanks for everyones input
Sorry, I didn't see this post earlier, backsburg momma. How were your holidays? Did you manage all right?
im sorry i have been busy bouncing from shelters to mental instutions…all because nobody understands this disease. they thought iwas addicted to drugs all because my balance was so off and i had such very bad fatigue.
now im back at my husbands house awaiting a transitional apartment hopefully soon! because my husband and i are legally seperated and he doesnt want me here.
so im making the best of it!
how arw you doing?
I am so sorry to hear this, Blacksburg mama. I hope you get your apartment soon. Divorce and separation are all too common with rare disease patients, as are misdiagnosis and referral to psych. I hope you can get a recommendation here for a more knowledgeable doctor. Keep posting on the discussion forum -- it should help getting "backup" from our members here. We need more awareness about CIDP, for sure.
We all do hope for a "more knowledgeable" doctor but the sad fact is that even many of the most knowledgeable docs available may actually know less about your condition than you do if you have been able to do some diligent research because (putting it simply) - we are special people - with something quite rare that even the most knowledgeable do not fully understand. So momma - now you have that to deal with as well as those other distractions in your life.
Those of us in more stable situations just have to admire your intestinal fortitude (we have a less polite word for that here - but I desisted...).
I hope someone close to you can give you that introduction and please do continue to post here. People might not respond but you can just bet their thoughts are with you and more strength to you!!!
Thank you so much for your post! Sometimes just to know and hear people respond and acknowledge
you means the world!
I am thankful for this place to be able to talk or read about same issues as you. Its sad in a way that
I feel closer to you kind people that I have never met than the people in my life!
thank you also! I appreciate your response and I totally agree that more education about our
needs to be out as same as diabetes
.Because some docs look at me as if I just pulled the disease out of the air ndmyy to make you feel as i I my
If your symptoms are in your head.
Sorry for the typos my keyboard has taken over
good news! i finally got my apartment and same day got a determination from ssi that they didnt think i am disabled. ughhh but its ok we will appeal and pray and go forth with gods plan for me.
thank you all for your support!