Sharon – I would love to see you!!! My family and friends think I’ve lost my mind because I am looking at the time away from my home and my office almost as a vacation. While I know it will no picnic, I am soooooooooooooooo ready to put this behind me, I can’t wait to get there. And now you’ve just added one more reason to look forward to my time in Chicago! See you there!!!!

Yes I do get headaches the days after. A lot of drinking and panadol xtra (Paracetamol and coffeini) helps

[FONT=”Microsoft Sans Serif”]i was often dizzy while i had cidp… i even passed out on 3 occasions.

i have heard it described as orthostatic hypertension but i can’t confirm that. most neuros think cidp is confined to lower legs and hands– many often dispute that we have pain associated with the condition. another reason i was happy to be treated by an immuotherapist rather than a neurologist. i believe that the neurologist’s toolbox contains treatment options for handling symptoms, not on the root cause of the disease. but i digress.

when i stood up, i had to hold on more than not, lest i would fall down from severe dizziness. and i might add, i was [B]not[/B] on ivig. my point being that i feel it is due to the disease primarily– although when i did try ivig, it made me feel worse in all ways so perhaps it can exasperate other states of being.

incidentally, one of the reasons i was so particularly confident that my cidp had been killed off was the fact that, despite massive doses of chemotherapy, my dizziness was gone before i even left the hospital!

best–[/FONT]

[FONT=”Microsoft Sans Serif”]yes… i had similar problems with hormones. i have even more now, post transplant. i am going to see an endocrinologist in a couple of weeks to see about setting things straight.

keep in mind, they, the docs, just don’t know much about cidp and its in intricacies… they know the stuff in their med books. for example, when i spoke to my 1st neuro about sexual dysfunction/anorgasmia, he said, “well, i’m sure you’re all stressed out from the illness and that is what is causing the problem.” i knew better– and the problem no longer exists.

you may benefit from seeing an OBGYN or an endocrinologist.

good luck jessica.

alice

p.s. did you get in with northwestern?[/FONT]

yes… i had similar problems with hormones. i have even more now, post transplant. i am going to see an endocrinologist in a couple of weeks to see about setting things straight.

keep in mind, they, the docs, just don’t know much about cidp and its in intricacies… they know the stuff in their med books. for example, when i spoke to my 1st neuro about sexual dysfunction/anorgasmia, he said, “well, i’m sure your all stressed out from the illness and that is what is causing the problem.” i knew better– and the problem no longer exists.

you may benefit from seeing an OBGYN or an endocrinologist.

good luck jessica.

alice

p.s. did you get in with northwestern?

it makes good sense survivor21yrs. i’m sorry for your pain.
thanks katyk, as always, you are consciously informative…
hang in there joan.
a.

I broke out over many -parts of my body… I don’t remember a whole lot now as time is erasing a lot but I do know this is a side effect…. deAn

When the weather starts to change in the fall season I am messed up until springtime. I went to the DR. last week and he put me on medicine to help with the sinus infection I have now. I just finished up tamiflu and before that I had 2 rounds of the zpac. I try my best to stay away from most and still get this every fall until spring.
MOM…You take care of yourself. I can’t even imagine how it hurts you to have a sick child. I mention you and Kevie in my prayers quite often. YOU just have to be a special person and mother. I will continue to pray for you both, and covet your prayers on this end.

God bless you both,
Drummer

you can find me under my full name: alice dicroce
please add/invite me.
thanks,
alice

There is a link between lupus and cidp in that they are both auto-immune disorders. Some researchers believe that when you have one autoimmune disorder you are more likely than the average population to get another. I know Linda Martin is living proof of that and that her daughters if I rememv=ber correctly. I am going to pray that it is not lupus and just something like you drink too much pop. Ha Keep us posted.

the only thing that helps my pain is vicodin.
good luck, alice

Yes! I was diagnosed with GBS in Nov ’07.
I can recall walking ba5refoot in the snow!
Now I sleep in PJ’s and with a blanket ande comforter!
Used to sleep nude!
As I sit here I am COLD! with the t’stat at 75!:confused:

I am to be getting my first check in about two weeks. keep applying and get your doctor to write a letter.

Peggy I met a lady in rehab that got GBS and her eyes crossed . She had to wear a patch. Thats what is so strange and unpredictable about this is nothing is “normal” yes some similarities and there are many but none are a given. My symptoms are similar to one and another and another but they have some I don’t have. It makes it really hard to have a “normal” treatment that works on everyone. One thing that does help everyone is the MIND, keeping a positive attitude and doing what your told to do helps also. Never lose your faith that you will beat this. It may be a long battle or a short one but keep fighting. This FORUMLY helps a great deal also.

[COLOR=magenta]Hello,[/COLOR]
[COLOR=magenta][/COLOR]
[COLOR=magenta]yes I do seem to have problems with the cold. I become stiff and I hurt and my blance and walking seems to become worse. Not sure if its from GBS or not but I did not have this problem before GBS. So maybe…..[/COLOR]