1st Timer

Hi Janice,

Welcome, we are glad you found us.

I am one of the ones (only one?) on here who has both CIDP and MGUS. Although as of yet my MGUS hasn’t led to any findings of cancer or anything like that.

The majority of us have some type of neuropathic pain, I take Neurontin as do others, there is also Lyrica and some older drugs all of which help with that pain. Have you tried any of these?? Did they help?? If not I would ask my Neuro why they haven’t given you these yet.

I also have had muscle pain off and on though I never am quite sure if it is due to CIDP or something else. Maybe if you get the nerve pain treated that will help with the muscle pain as well.

I have been fortunate to meet alot of the people on here and also others in person who have CIDP, GBS or related so I don’t feel so alone with it anymore. We do understand and we are here to help you however we can.

Take care and come back often.

Jerimy

[quote=Janice B]

Hi my name is Janice & I’m new to the site, although not new to the illness. I’ve been sick now for 4 yrs. My official dx is: CIDP, I’ve had IVIG regularly now for almost 4 yrs, tried PP, did not like that. I have peri neuropathy in both feet, and alot of pain. Does anyone out there know what I’m talking about? I’ve joined just to be able to talk to someone else who knows, my husband is extremely supportive, as are all my family members, but none of them , ” really know” what I’m talking about. And I can only guess that most if not all of you do know. It’s a lonely illness, it’s not like diabeties, or cancer, something that everyone has heard of, not too many people know what you’re talking about when you say ” I have CIDP”, they just kinda look @ you like you have a contagious illness. Right ??? Before writing, I’ve read thru some of the notes, and I can identify with so much of this. Someone mentioned MGUS, boy I know about that also. Was thought to have that also, had a tumor right in the middle of my left femor bone, @ first, I’ve had radiation therapy, and a lot of drugs, I also am under the watchfull eye of an oncologist, they check me for lesions, about every 4 to 6 mths. For someone who’s had this,this long, I seem to know very little about it. Someone else mentioned about the pain in the whole body, I’m curious, about that, has anyone out there experienced muscle pain alot?? My arms hurt so bad right now, they are waking me up @ nite, what’s that ???
Well, since I’ve written my 1st book, I hope I did not bore anyone to tears. I sympathize with everyone, I DO UNDERSTAND !!
Well, it will certainly be nice to converse with someone who understands..
take it easy out there
Janice B :confused:[/quote]

Hi Janice,

Welcome to the Forums. Great bunch of people here who will try and help in any way they can.

Just a suggestion, post in the Adult CIDP section, most of the vets here will come in later and answer some of your questions.

🙂 🙂 🙂 🙂

Janice,

When I first joined I was posting all over the place and sometimes I’d post the same thing twice. You’ll get the hang of it after a very, very short time.

🙂 🙂 🙂 🙂

Hi Janice,
I’ll also suggest that you do what Brandy said. Next time you post, place it in CIDP/ADULT. You’ll be overlooked if you post in this category.

Hello Janice,
Don’t worry about figuring out how to move your post, just start new post in CIDP/ADULT category. You can just refer to this catagory so people can pick up on your story.