Need Your advice for a 33 year old
AnonymousJune 19, 2007 at 11:01 pm
I don’t often post my own threads, just try to help others, but I feel like I could use some help from the expertise on this forum. Well, your best advice anyways. I got a call from a mother in PA tonight, her friend had read an old article still on the Internet that my son wrote for our local newspaper about me about 3 years ago, then she Googled in the name of the newspaper, & found the phone number & called him at work. She has a 33 year old son who lives in Las Vegas who came down very rapidly with a severe case of CIDP. Since last December he has been strictly in a wheelchair with absolutely no use of his hands at all, cannot bear any weight at all.
He sees his neuro only every 3 months & was started on 5 days of IVIG once a month back in Jan. His neuro does not seem concerned at all that he has shown no improvement in all this time (he is actually worse), as he said that IVIG is cummulative, & that the more it builds up in his body then it will heal him. I disagree, knowing that IVIG has a half-life of 21-28 days. I told her that I felt a more aggressive treatment is needed such as steroids or even the chemo drugs. I am concerned that for someone so young that the longer his nerves are damaged, or possibly even attacked, that the worse his recovery will be.
She said he & his 29 year old wife are not all that concerned, as the neuro has assured him that he will be fully recovered in a year. Am I nuts, or does this neuro know something about CIDP that I don’t know? She cried often while we talked, & I tried to help her the best I could, mostly by encouraging her to contact Dr. Gareth Parry at the University of Minnesota. What else could I have told her? Also, I haven’t been on IVIG since 2002, so am I right about that? Any comments or suggestions would be appreciated…
AnonymousJune 20, 2007 at 1:15 am
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)
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.
AnonymousJune 20, 2007 at 2:53 am
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.
AnonymousJune 20, 2007 at 9:23 am
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.
AnonymousJune 20, 2007 at 4:30 pm
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.
AnonymousJune 20, 2007 at 11:54 pm
Thanks so much for all of your opinions, what a caring group! First off, when I said a sudden onset of CIDP, it was actually about seven weeks. But to go from perfectly healthy to the state he is in is rather quick even for CIDP. The mother who called me does not use the internet, said when she first heard the dx & went researching CIDP, that it was too depressing for her. The young man hasn’t been able to use the computer since January & his wife is trying to work full-time & take care of him. Apparently they have done no researching. They recently built a new home, but he can’t get upstairs, so is confined to basically a bedroom & an office downstairs (must be a split-level home?)
Apparently the mother offered to buy them a stair-stepper, but they declined, saying that soon he wouldn’t need it? I think they are in la-la land myself, listening to this neuro. I would be thrilled to hear that he does eventually make a full recovery, but I doubt that this is going to happen, at least not with this neuro. I can’t remember if she told me how he was dx, but I never even thought that it could be some other motor neuron disease. It scared me when she said he is unable to move his hands at all or bear any weight. Even at my worst I could make a fist, although my hands had no strength to them. I could also bear weight at my worst, but not enough to walk. This case just sounds so extreme to me, & his age also has me depressed. I just hope he is getting all of the help he should be getting.
CD, that is so wonderful about the recovery your daughter made. Makes me have hope for this young man. I just thought it strange that getting IVIG for 5 days a month has not improved his condition. There are no stages of getting a little better, then getting worse. It sounds more like the progressive form to me than the relapsing/remitting? I wish I could have been more help. I would like to hear from Emily, as her recovery seemed so miraculous to me. I also remember Brokkie being paralyzed for like a year in the hospital, now she is in complete remission & off of all treatments. Anyone but me remember Brookie?
AnonymousJune 21, 2007 at 4:34 am
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.
AnonymousJune 23, 2007 at 8:46 pm
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.
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