Has anyone met another person with any of the descriptions of our diseases FACE TO FACE?

General General CIDP Discussion
1

Please reply to me if you have and where geographically.
Thank you.
Regards
Happy

2

Hi Happy, I went to a GBS/CIDP Foundation sponsored meeting, Chicago area. Mostly there were GBS patients, maybe 12 gbsers and 3 cidpers. It was a meeting and 2 left immediately following before I could speak with them. There was a young man just out of college I met and think about all the time. Another cidper I met while waiting for an emg/ncs. We were both with the same doctor and he had been seriously handicapped for a while as I had. We hugged, cried, laughed and then we introduced ourselves.

3

Thank you Mabes.no such meetings here in u.k. It’s hard to get any answers from anyone. That sounded like a very emotional meeting…it’s only us who understand the feelings of helplessness we live with.
Thanks again…take care
Regards
Happy

4

I have not met anyone with CIDP. I appear to be the only person on Maui with this disease, as far as I know.

5

Thank you for your reply. Interesting that you live in a different cultural environment to most of us. Perhaps you are “unique” or it is not a common disease where you are? Of 1091 members on the site…51 are in u.k…and I only saw one in Hawaii. The majority of the remainder are U.S where I lived for 6 years. Two years after I came back to u.k I became ill.

Thanks again

Regards

Happy
PS

I met my first and only person who is CIDP 2 weeks ago…every comparison the same…right down to the deformed hands. He came to buy a tractor from my eldest son…and Stephen brought him to see me. It was an amazing meeting…and so enlightening.





estaban said:

I have not met anyone with CIDP. I appear to be the only person on Maui with this disease, as far as I know.

6

Hi my name is Lisa, and I would love to talk to someone that has Cidp as well. I have so many questions, and would like to hear other peoples symptoms. I work the night shift , so you can call me anytime after 4:00 Eastern time. I'm usually up by then. My phone number is 724-■■■■■■■■. Anyone is welcomed to call me if they want to talk about our daily struggles. I have the hardest time with people not understanding , and looking at you in misbelieve. I can be fine for weeks. But if I walk to much are over exert my self. Then I'm in the bed for a day and then I can't hardly walk for a week or two.

7

Hi Lisa

I live in England so calling you would be great…but expensive. I will figure out the time difference…and do my best.

Regards

Happy

PS do not worry about people looking…thinking you are drunk…arthritic…etc.if they ask me what’s wrong…I say…“no point in telling you it’s too hard to pronounce” lol



ltrain said:

Hi my name is Lisa, and I would love to talk to someone that has Cidp as well. I have so many questions, and would like to hear other peoples symptoms. I work the night shift , so you can call me anytime after 4:00 Eastern time. I’m usually up by then. My phone number is 724-288-8084. Anyone is welcomed to call me if they want to talk about our daily struggles. I have the hardest time with people not understanding , and looking at you in misbelieve. I can be fine for weeks. But if I walk to much are over exert my self. Then I’m in the bed for a day and then I can’t hardly walk for a week or two.

8

Hi! I live in Argentina and I haven't met anybody in here with CIDP apart from me.
Actually, when I was diagnosed with it there weren't even texts in Spanish for CIDP...
There are many people that have other autoimmune diseases such as Guillain Barre Syndrome, Lupus and stuff, though.

Happy said:

Thank you for your reply. Interesting that you live in a different cultural environment to most of us. Perhaps you are "unique" or it is not a common disease where you are? Of 1091 members on the site..51 are in u.k...and I only saw one in Hawaii. The majority of the remainder are U.S where I lived for 6 years. Two years after I came back to u.k I became ill.
Thanks again
Regards
Happy
PS
I met my first and only person who is CIDP 2 weeks ago...every comparison the same...right down to the deformed hands. He came to buy a tractor from my eldest son...and Stephen brought him to see me. It was an amazing meeting...and so enlightening.


estaban said:

I have not met anyone with CIDP. I appear to be the only person on Maui with this disease, as far as I know.

9

The closest to CIDP is my wife who has MS, and the more she progresses her symptoms are starting to be similar to mine. But she still has other symptoms that are completely different.

I'm here in Oklahoma

10

Hi Beteeter
Thanks for your reply. My good friend is MS since 1979 age 25. We talk a lot…when not socialising… about our situation. Ones world gets smaller we agree…although I am still walking. He told me today he has lost partial sight in one eye. He has done amazingly well…but takes nothing medicinal at all, except a “box” by his tummy with pain killer…and a tube to the spinal cord which helps immensely. My best regards to you and your wife. You are both really brave.
Take care
Regards
Happy.

11

Hi Beteeter

Thanks for your reply. My good friend is MS since 1979 age 25. We talk a lot…when not socialising… about our situation. Ones world gets smaller we agree…although I am still walking. He told me today he has lost partial sight in one eye. He has done amazingly well…but takes nothing medicinal at all, except a “box” by his tummy with pain killer…and a tube to the spinal cord which helps immensely. My best regards to you and your wife. You are both really brave.

Take care

Regards

Happy.

12

Hi Beteeter

Thanks for your reply. My good friend is MS since 1979 age 25. We talk a lot…when not socialising… about our situation. Ones world gets smaller we agree…although I am still walking. He told me today he has lost partial sight in one eye. He has done amazingly well…but takes nothing medicinal at all, except a “box” by his tummy with pain killer…and a tube to the spinal cord which helps immensely. My best regards to you and your wife. You are both really brave. I hope you get/have a treatment to keep you fairly
stable. It’s swings and roundabouts…one takes a drop from time to time. Then we climb back into the saddle.
Kind Regards
Happy

Regards

Happy.

13

Hey Happy,

I live in Portsmouth, England. I met someone getting IVIG for CIDP, I have had it for 7 years and I only met her last year, she had had it coming up to 3 years I believe. If you ever want to get into contact please do.

Thanks

Tom