Need Your advice for a 33 year old

Pam,

First thought upon reading: it is so rare that cidp comes on this rapidly, and this severely; any idea if he shows signs of relapse, or is this a sudden attack that has shown no improvement?

The sudden onset makes me wonder if a definitive diagnosis has been made.

You mentioned his hands – I recall reading in journal articles of motor neuron disease – started in the hands and arms and progressed from there. I think I am remembering this right – can look into it in a day or two if no one can clarify. Multifocal motor neuropathy possible other differential. Throwing these ideas out there to suggest more testing is needed. It could be devastating to them to find out after 6 months treatment that he had something else, and they lost valuable time to take a different approach.

I agree with you – ivig doesn’t accumulate over a period of a year. Sometimes, it may take 2 or 3 months to begin showing any real improvement, but as we all have said many times, the nerves can begin to heal themselves when the attack is stopped by ivig.

I wanted to respond to your post mainly because my daughter did not show any improvement for over a year (cidp), and slowly I watched her get weaker with each “relapse”. She had ivig every 2 weeks for 16 months – after a few days of feeling bad from the infusion, she would regain a bit of strength (enough that she could hold a cup of water). It would only last about a week or 10 days before she would start back-sliding. The point I wanted to make in all of this is that we were able to see a response from ivig, even if only a little. From your post, it sounds like he has had no response to ivig in more than 6 months.

I haven’t helped much, but I do hope they will benefit from taking a second look at his diagnosis, and investigate other treatment options. (a plan for the worst, hope for the best strategy)

cd

Oops, one more thing – my daughter was bedbound/wheelchair for a year while I waited for ivig to do its magic. Then I began a treatment strategy that *seemed* to change her course. (a bit unorthodox, won’t go into it now) She has never relapsed again, and from all appearances, she appears normal (walks, can use hands, has balance, etc). As her mother, I can see limitations in that her nerves have not completely healed (still notice weakness in one foot for example). I still have to shake my head to make sure it’s real sometimes, and subconsciously holding my breath, but til then, I enjoy watching my daughter take control of her life again. A good recovery can happen – even after a year.

Pam, you are correct about the life of ivig. i too have to question the cidp dx. acute onset, doesn’t sound like he has ever had this before, and recovery in a year-cidp is different from gbs because of the longer time it takes to lose the nerves. i have the acute onset type with relapses coming on in a relatively short time, with no full recovery in between relapses, so i don’t think getting another neuros opinion would hurt anything. i would do something pretty quickly if it were me and at that age with no response from ivig yet. You did great suggesting they talk with Dr. Parry. Take care.

Pam,

Does the mother you talked to have the handouts from the GBSFI?

How about having her print out some of the manyy articles about CIDP from the Forums or from the archives of GBSFI to give to her son?

Or even having her son come on the Forum, if only to read some of the information here.

Sometimes “hearing” the information from the experts can get through when a family member can’t.

Best wishes to you and to the woman you are helping.

Suzanne

Pam perhaps you could get her or his wife to come here and then she could read about all of us and our experiences? It sure sounds like she needs to arm herself with more information to make sure he gets what he needs.

Jerimy

Let’s see if anything I say can help. I did well with IVIG because even though I was severely damaged, I only got worse in very small spurts. It did not happen to me rapidly. Had I got worse at a rapid pace, most definately, I would have been talking to my doctor about more aggressive treatments and he would have listened.

Even though I am not progressing anymore, I was never told by my doctor that I’d heal 100% or that IVIG would heal me 100% and after almost four years now of being stable, I think I have reached my window of healing.

I hope this family will consult with a neurologist who has a great deal of knowledge of CIDP before it is too late. It might be possible that you can still control the progression of CIDP following his doctor’s instructions, but I do believe that the longer you wait to find out if this is the right treatment, the more damage will done and you are left with the residuals, damage that cannot heal.

Something doesn’t sound quite right. Perhaps it is time for a second opinion. Las Vegas isn’t that far from LA

Hi Pam,

I know that I don’t post very often in the forum but I am here reading what everyone has to say and I keep all of you in my prayers. I have gotten so much information and comfort from everyone and I thank you all for being such a caring, loving and understanding family.

My heart goes out to this young man and his family. I too agree with everyone that IVIG does not “accumulate” and make you better in a years time. Hmmmm…… how wonderful that would be for all of us. My understanding is the same as yours, that IVIG stays in the system for 21-28 days. I had a sudden onset of CIDP in the beginning. I had actually been diagnosed with GBS at first. Like this young man I was not able to bear any weight on my legs without falling and I had no strength at all in my hands. I remember not even being able to lift a paper napkin. Once discharged from the hospital I had numerous relapses. I would be home for a couple of days and quickly decline and end up back in the hospital. I was then sent to SHANDS in Florida for a second opinion on my diagnosis. That is when they told me that I had CIDP. I have been getting IVIG every two weeks for the past eighteen months along with periodic hospitalizations for plasmapheresis. My neuro from SHANDS feels that plasmapheresis is needed from time to time to clean out the toxins and to start fresh with a “loading” dose of IVIG. I also take Imuran and Cymbalta. This plan of action has worked wonderfully for me. I will be going in the hospital on Monday, June 25, for plasmapheresis and a loading dose of IVIG. I am now to the point that I am back in a wheelchair and truly exhausted most of the time. I know that the last time I went through this treatment cycle I had such great improvement to the point that I was walking unassisted and could even climb a flight of stairs.

I hope and pray that this young man and his family get a second opinion and find a treatment plan that will help him improve. As we all know, CIDP is rare and not all neuros know that much about it. Seems as though there are many things that should be tried to help this young man improve even ever so slightly.

It’s strange to me that they have diagnosed him with CIDP when this is his first experience with it. I thought you didn’t get that diagnosis until you experienced “GBS” symptoms (repeatedly) [I]after[/I] appearing recovered – in a vicious cycle?

Anyway, I think this neuro is HIGHLY IRRESPONSIBLE to tell this man he will be fine in a year!!! 😮 Even if his symptoms do ease up in the next few months, he will still be dealing with muscle atrophy and possibly even permanent nerve damage.

My immediate reaction upon reading his story is to recommend that he get a second opinion. It can’t hurt anything and it might help EVERYTHING.
😎