So sorry to hear of your troubles. It sounds like from your symptoms that you have CIDP and not GBS. I am sorry about that, too. My daughter got ivig too fast and got aseptic meningitis. I thought we were going to lose her because she could not eat. Tell them to slow you wayyyyyy down and drink, drink, drink. They could give you a little bit of steroids before your tx to help with side effects too.

Hi…

I am at the point, finally, where I am seriously trying to figure out if I can make a trip to the Mayo clinic work for me. What an amazing website and philosophy they have! Imagine…test results available…ON THE WEB…IMMEDIATELY…FOR PAITENTS TO DOWNLOAD AT THEIR LEISURE!! Whodathought?!? :p

On the plus side…

My cousin’s wife is the head of nursing there, so I could probably stay with them during my visit.

I now have three doctors supporting this idea.

My wife and I changed our insurance, and our current plan would pay for about 50% of the costs.

On the negative side…

The “other” fifty percent… 😮

Could you tell me what this trip ended up costing you? If you’d like to PM me to keep the information private, I’d understand.

From what I know, they are a very “collaborative” clinic…all the doctors, from every specialty, meet every day to review your test results and discuss. Is that correct?

How long did you have to wait for a scheduled visit?

Are you glad you went?

I just have to do something…things are getting worse, and all my doctors have basically placed me on a “maintenance program”, rather than staying aggressive about diagnoses and better treatments. I fear that if I don’t do something the time will soon come when I won’t be ABLE to do something…know what I mean?

Many thanks…

Elmo

Thanks for your help. Please volunteer any thoughts and information you think would be helpful.

No to all except #6. I have a brother that was dignosed with GBS about 2 years ago, he was paralyzed, has made little improvement.

In 2004 I had major trouble with my lower back, had problems going up and down steps, had back surgery 01-05, when I recuperated from surgery was not much better, the tingling in my feet began, drop foot and then balance problems. The surgeon put screws in my back too close to a nerve. He did not tell me, I found out when I requested a copy of the report several months later. After many doctors I was diagnosed with CIDP in 11-09.

1. Were you diagnosed with sleep apnea before your diagnosis? No
2. Did you require a use of a c-pap machine? For how long? No
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? Yes – my wife has complained about smelly night-time flatulence.
4. Did you receive a vacination of any kind prior to symptoms? If yes, How long before onset of symptoms? Yes, had conventional flu vaccine about a week before onset of symptoms.
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? No
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? No
7. Are you a nail biter? No
8. Did you get an H1N1 in 1976? No

Hi, Amy, I am sorry that your hands and feet are more numb and know that this is scarey. I have a couple of questions–how fast has the numbness come on and did it start in the feet and then the hands or both? Has anything else changed?
the reasons I ask are several. If something is changing fast, you have to be really careful as you might get numb and weak rapidly up to the breathing muscles. This is more characteristic of GBS or relapsed GBS and not of CODP, but any rapid change should be reported to your neurologist and if it keeps rising up your body, you need to be seen at the neurologists or an ER.

If a person is really worried or anxious, as lots of this stuff will make you, you can get more tingling and numbness in the hands and feet associated with that. This is still really scarey, but is different that numbness and tingling from ongoing nerve damage and needs to be addressed and treated differently. I do not know if this is any part of it, but thought it was worth a mention.

I also read back through some of your previous posts and wanted to comment on walking without AFOs. My PT and rehab doctor said that it was really important to keep moving and stretching the ankles to keep them as strong as possible despite the foot drop. For me, it worked to walk at work with AFOS and at home without them especially on the stairs (as it is hard to walk on stairs period, but especially with AFOs). If you are unstable, there are exercises to gently stretch the Achilles tendon (I would also stand by the kitchen counter holding on for support and then rising up on my toes and also trying to raise my toes up (trying being the major word there). You said in one post that you were going to get hinged AFOs. You need a little flexibility in the Achilles to be able to use these. Even drawing circles with your feet in the air or other ways to stretch and use the foot muscles will help strength, movement, and balance.

WithHope for a cure of these diseases

Can you fill us in a little more on what happened before and what is happening now so that we can help answer questions better.
Is what is happening now like what happened 11 years ago? Such as did you have blurred vision and muscle fatigue then?
What do you mean by sick all the time?
Is the muscle fatigue all over or mainly in the head and neck?
Did you completely recover with no left over concerns (residuals) before–meaning that what is happening is a significant downward turn?

People can have worsening of symptoms with a number of things–particularly a new major time of energy expendature or stress–even “good stress”. For example, if you have a young baby or a toddler, you could have new physical stresses, less sleep, and spend a lot of time talking and smiling at him/her. Or as a special education teacher, you could be “working” extra hard to help your students. Blurred vision can result from lots of computer time or reading more than you used to do. People often do not heal completely after these illnesses, but may be “good enough” for most of daily life to seem pretty normal. There is also a phenonema of post-GBS neuropathy that can happen years after. This is not return of the illness, just a new presentation of symptoms that damge had been done.

It is worth noting that people can also relapse, so if your symptoms are like you starting having when a teenager, you should see a neurologist again. Talk to your parents, if you can. Ask to get the information packet from the foundation. It has a lot of practical information. See if the blurred vision gets better if you do less with your eyes in a day.

WithHope for cure of these diseases.

Hello,
I can only speak for myself, so what I say, doesn’t mean it will happen for everyone. Some of us may need to be on IVIG for a lifetime. I re-acted well to IVIG’s and I was on them for about four years, but during the second and third years, I became aware that I wasn’t having any more relapses and I’d just stay the same. I knew during the fourth year that it was time to find out how I’d do without the IVIG’s and the prednisone, so they were both stopped and I have now been off all medications, no more IVIG’s for almoust four years now. I don’t allow myself to think that I am cured now, but I can go through each year without feeling afraid about when it will come back.

Pay attention to how you feel in-between the IVIG’s and I believe that if you feel like you are getting weaker when you are not getting them, then you still need them.

Hi, My name is Dawn and my sons name is Kevin. He just turned 10 in Dec. and was diagnosed with cidp in Sep. We were in the hosp for several days and recvd. ivig for five days. 10/03 we were released. Anyway, my son still complains of head aches. I should mention that the Drs. are thinking his dx. to gbs based on his rapid recovery. After the third day of treatment, he was running down the halls and he is currently doing basketball thru the park district. Some days he does exhibit more fatigue than others and he is not 100% yet. Besides fatigue and headaches, he also has extreme difficulty falling asleep. Does your child have any of these residuals? Any other comments or advice you could give me? Thanks, Dawn

Hello Mary Ann,
I can kinda answer question number one and I’m saying “kinda” because I don’t know if CIDP can PERMANENTLY go away. CIDP can stop progressing so that you don’t need anymore treatments. I don’t know if this will eventually happen for all of us and I don’t know if you can stop progressing if you chose not to have any treatments. I myself, would never take a chance on this route. I am no longer progressing. I am no longer on any kind of a treatment for CIDP. I have gone through three years of not showing any signs of relapse. I am left with the damage that CIDP did and it’s unknown just how much I will recover. For me, progress is coming on a year to year basis, but I still believe that I have the potential to heal more.

I think some of the others will answer that heat does effect them. I’ve become aware that very cold weather will effect my hands. My fingers will buckle on me until I get them warmed up.

Hello,
I know you said no new meds, no new anything, but just to be safe and sure, double check and find out if the BRAND of IVIG was changed because you may have been thinking IVIG is IVIG and not a new med. I have read posts from other members who got severe headaches when the BRAND was changed.

Hello again,
I WOULD TRY TO CONTACT ONE OF THE DOCTOR’S THAT LEE SUGGESTED and if by chance they are ones you’ve already spoken to, this is something else you can do to find a neurologist who will work with you:

(link deleted by administration)

go to the bottom of the page, look for FIND A DOCTOR. When you put in Portland, Oregon, a listing of 70 neurologists comes up.

Hello,
This is the name and phone number of a person who might be able to help you. He is the liaison for GBSFI Foundation in the Portland, Oregon area. His name is
Ed Arata
14225 SW Rochester Drive
Beaverton, Oregon 97075
(503) 646-5585

Hang in There.