The same thing happened to me. The doctors can’t give you the patient name BUT you can give the doctor your name and number and ask them to give it to other patient.

Write down a small message explaining who you are and your condition.

Let them know on the note about this site and the supporrt that is offered.

I hope that helps

Rhonda from Canada

Nice to meet you Sonny, welcome to the forums! Glad to hear you are making progress. It’s always nice to hear a success story. Hope you will keep posting and let us know how you are doing.:)

Hi Sonny, Welcome to the forums, glad you found us:) . Were you diagnosed with CIDP or GBS?

Sonny,

You have come to the right place to ask questions. There is so much to read on the forum and so much to learn. How are you doing now? Once again, welcome.

Vic,

Welcome, to the site. Sorry you have to be a part of this site because of cidp. As you have found already from your reading there are many who have experience cidp. This is a good place to ask question and offer encouragement and advise to others.

Believe me, most doctors don’t know a thing. I’ve learned more off this site than I’ve learned anywhere else. You’re in the right place and your English is excellent.

Take Care
Val

Welcome to the family Vic, glad you found us. Your English is great. Hope to get to know you better.

Jerimy

Welcome to the Family Vic.

Hello cidpvic of the Netherlands. My wife and I drove through your fine country 2 weeks ago on our way back to England from the German Harz. Ferry home from IJmuiden to the Tyne. Did a countryside tour for a few hours. Someone once said to me,”Holland is just flat.” Our response is – “It may be flat but it is not boring.” [url]www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi[/url]

On the main part of the UK site there is very good CIDP information downloadable in HTML or PDF format, easy to print out.

Where in the Netherlands are you based? There is some very good neurological expertise on GBS and CIDP in the Netherlands.:)

Hey there Vic !!

I am glad you found us. Finding others with the same condition, and then being able to share information was instrumental for me. It was so hard dealing with it alone. Just being able to talk about it, and understand others in the same situation lets you know that there is hope.

We all walk in the same shoes. That means a lot.

Take care friend. Keep on coming. Let’sa get to know one another.

Dick S
North Carolina.

Hi Vic, welcome to the site. Glad that you found us.

Blu

Vic,

Thats the problem with CIDP and residuals from, or post, GBS, people dont “see” where the problem is. You dont look ill, so therefore they dont think you are ill!! Soooo frustrating. Im reading a great book called …. “Sick and Tired of feeling sick and tired : Living with invisible chronic illness” (something like that), and it just explains our situation perfectly – you might enjoy reading it.

[url]http://www.gbs-cidp.org/forums/showthread.php?t=39[/url]

I am so sorry you are going through such a rough time. 🙁 do you think that once you have seen the doctor, and things can be better explained by him, that maybe those around you will understand a little more? I hope that is the case.

Vic,

I dont think its a matter of people feeling sorry for you, I think its more about support from those around you. My family do understand to a point. I almost feel they undersand more about the fatigue than they do the pain in my hands and feet. Each day brings with it different emotions. One day I just dont care, dont want to speak or see anyone. I go through tremendous anger, doubt, frustration, depression, hope, and then there are the days that I am able to do so much more than I have in the previous days, and I have the most increadible feeling of accomplishment and joy.
None of the doctors around here have dealt with GBS, and its a tough uphill battle to try and get them to listen. I have had a neurologist say that if a person had GBS, and you ‘got better’, then you are better and there are no problems, [I]nothing[/I]!. Other doctors gloss over it and seem to sweep it under the rug and try to get you out as soon as possible. I think it is such a specialized thing, and there is obviously so much to learn that each doctor has their own take on this ‘thing’ that they know nothing about. I am not by any means the only one that seems to have these experiences with some doctors, I have spoken to so many in the same situation. These experiences leave you emotionally drained and wondering if maybe you are crazy.

Im keen to find out what your doc will say this week.

Vic,

It is hard sometimes to get that understanding from others. I don’t want to be babied or treated any differently. But I do need people to understand that I have limits as to what I can and cannot do. My family is pretty good about it now. My wife and kids, I mean. When I tell them I need to sit and rest, they let me. When I need help, they usually give it. And when I need my space, they clear out. BUt it was a joined effort to get us this way. They have seen me driven to bed for a few days in pain, and hey have seen me do some good things as well. When I can’t walk and need my powerchair, they help get it out, and don’t seem embarrassed that their Dad isn’t walking. I did a campus tour with mt daughter at UNC CHapel Hill. I rode all day. She was pretty good about it.

Other people are not as accepting all the time, but then I try to understand that they don’t live with me and understand me.

As for us here at this site. I am so grateful for so many people who deal with CIDP everyday. We all can understand each other. There have been many times I needed to vent some frustrations, and it still gets frustrating. So many times I have needed information, and people here have shared. Once I started sharing with others the successes I have had, it makes me feel better as well. If we can help each other, we help ourselves. That is what makes it good here.

There is always something to learn each day. My neuro’s have been good to me, but there is no better understanding than right here.

I’m in North Carolina. What part of the world do you hail from?

Dick S

Hello Vic, I’m 43 and like you deal with alot people looking at me and thinking I’m fine health wise. That is until I start to walk, been having a problem with my balance lately, lol. You’ll not only find alot of information here but alot of support. Everyone is great, we all need someone to lean on sometimes.
Hey Dick S, I liked the quote. I printed it out and put it on the fridge, as I’m doing steriods now I spend alot of time there!

Hi Vic
I am Patricia, I am 73, have 4 children, 18 living grandchildren, 5 great grandchildren. Netherlands? My husband and I visited that country in about 1975. Our tour seller booked us into a hotel in the RED LIGHT district without our knowledge. Good thing none of us knew Dutch. It’s a beautiful country, so green and we found the people friendly.

Down to business, I got dx’d in 1987 with CIDP. Have had no treatment–my doctors all back away from it. Except one doctor–He was scared to death. Gave me meds a little too generously. So I am still trying to work out some medical stuff that will work for me. I hope you can find relief for you condition.
Patricia

Vic,

When this week are you seeing the doc? Are you able to drive yourself to the appointment? (Is the ribbon on your car?) Are you going to be going by yourself or is someone able to go with you? [I]So many questions, so little time[/I].

Well it looks like whent he forum went down two days ago, some of our posts went missing! Once again vic, well done on the weight loss!

Vic,

Please let us know how it went at the doctors today.

Vic.

I am sorry to hear the treatment that you are getting. CIDP stands for Chronic Immune Demylenating Polyneuropathy or Chronic GBS, there are several variants of it also, here is the CIDP-USA website [url]http://www.cidpusa.org/[/url], also there is an explanation of the variants here [url]http://www.cidpusa.org/variants.html[/url] Print off as much information as you can and present it to the Doctors if you need to. The drug that alot of us take for nerve pain is called Neurontin here and Gabapentin elsewhere, here is a link to it also so you can print off the information (link deleted by administration). I hope that helps a little. Contact me if I can help further. Take care and good luck.

Jerimy

Vic,

I was hoping that you would have had a more positive experience with the doctor as I [I]know[/I] in the past you have not wanted to go and see one, and this was a huge step for you. It is so devastating going to a medical professional and finding out that they have absolutely no clue, and the worst is, that you seem to have more knowledge than they do. On the otherhand I would hate to be a doctor nowadays because there is so much out there. But, having said that, I find its their apathy that gets to me the most!

I really do feel that you should find a specialist who knows GBS/CIDP or who is willing to work with you. John Fitzen posted this study that was published by a doctor in Rotterdam. Maybe you can even try and get it it Dutch, cause it is a looooong complicated paper. And, maybe even you could somehow see some of these docs? – Sal jy asseblief probeer om iemand te vind wat jou kan help, ek haat did as jy alleen sit en niemand verstaan wat met jou aangaan. Jy moet hulp kry! – Thought I would see how much of that you can understand, hopfully most of it 😀
If you cant open it, John Fitzen sent me a copy via email, and I will send it to you if you want me to.

I hope you got the information.

Vic,

Check out the link for the ISNO Dutch Neuromuscular Research Support Centre: (link deleted by administration). It has a Dutch version and should provide you with several leads. From checking out the English version, it looks like the Eramus Medical Center in Rotterdam has doctors familiar with CIDP, for example.

Mark

My feet seem to burn (almost cramping feeling too) when I walk, or do exercises or similar. My hands have that same feeling if I write for a little while, sometimes if I hold the pone, or peel vegetables etc.

Vic,

Just a thought, have you been checked for Rheumatoid Arthritis? It’s another autoimmune disease and could be causing your joint pain. After CIDP I was diagnosed with RA as well. Best of luck to you.

Jerimy