Kevin has new symptoms
AnonymousMay 14, 2007 at 4:46 pm
Hello All – I am hoping someone in this group can help me determine if Kevin’s latest symptoms indicate a relapse of his CIDP. I have only posted once but have been reading the main forum for several weeks and can tell that this group is very knowledgeable. Kevin is just 21 and was diagnosed one year ago with CIDP. Two Neurologists confirmed the diagnosis. He is on Cellcept and Prednisone. He failed IVIG. He has chronic pain and is on percoset and vicodin. He is also taking neurontin. He has significant numbness in his feet and uses AFOs and a cane to walk. His hands were OK but recently started complaining of pain in his right arm and also numbness in his right hand. He seems to have more and more frequent episodes of this. His doctor feels that the CIDP is in remission because his measured strength in his monthly visits is the same. I think something else is going on – Kevin is despondent because he feels the doctor won’t do anything. Kevin’s doctor believes that Kevin has axonal nerve damage and that Plasmaferisis will not help – we should stay on this course. My son, just a year ago, was vibrant, energetic, and active looking forward to his future. Today, he spends his days at home, mostly laying down, trying to not think about his pain and what he can no longer do. I don’t want to minimize the current symptom. Thanks for all your help and comments.
AnonymousMay 14, 2007 at 8:42 pm
a ncv of his arm & hands, done correctly, will tell if the bad gbs antibodies are getting to these others extremities. axonal damage does not cause new areas to deteriorate. where do you live? a 2nd opinion sounds in order. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 14, 2007 at 8:59 pm
I am sorry for this new worry. Hugs to you 🙂
Most of us forget to factor in the grieving that [I]naturally[/I] takes place with such a life-changing event. Kevin’s life is forever changed from what he knew. That doesn’t mean that there won’t be any meaning to his “new life”; it just means that there is a [I]necessary adjustment time[/I]. And the amount of time needed varies from person to person. I know how difficult the adjustment has been for me (many days still on going) and I was already 43 yrs. old. I can not even begin to imagine how difficult this would be for such a young person!! It might be helpful to find someone who understands chronic illness that can visit with Kevin on an on going basis, for awhile. And you might try to get him interested in a hobby. I wish you all the best as you navigate these uncharted waters in your family.
May 14, 2007 at 9:58 pm
My son’s name is Kevin too! I’m Dawn Kevies mom. Too bad we both have so much in common. How long did Kevin have his symptoms before he was dx and recieved ivig? How many courses of ivig did he recieve? Did your ncv/emg indicate axonal damage? DAwn Kevie’s mom 😮
AnonymousMay 14, 2007 at 11:47 pm
Hi Kevin’s Mom, Welcome to the Family. Sorry to hear such a young man has this disease and all the problems that go with it. Its good to grieve to a point, after grief there has to come positive feelings and attitude. without positive feelings there are open doors to other health issues, like depression, stress and so on. Are there any friends who are able to give you some help in getting Kevin interested in something? Maybe they can spend time with him, go to movies, ball games, etc. Exercise is important for the body, modified to his ability. Aqua therapy is wonderful for people like us. It keeps the muscles from atrophying, helps the nerves regenerate healthy, helps reduce stress and gives a feeling of accomplishment. Is Kevin on an antidepressant of some sort? if not then i would ask the dr if he might need one. What dosage of neurontin is he taking? Maybe Kevin can get online and communicate with some of the young people on the site, or just get on and ask us any questions he has or just vent when he needs to. Please let Kevin know there are alot of “Family” members who are feeling what he is feeling, let him know he isn’t alone in his fight with cidp. Your a positive role model for your son, by finding this site you have opened a world wide window for him to look into, one positive step at a time will help him in the long run. Take care.
AnonymousMay 15, 2007 at 12:05 am
You are right to trust your instincts, if he is having a new pain in his arm & some numbess in his hand, then he is definitely NOT in remission. Once something is lost to CIDP, it is often hard to get it back, especially if he has the progressive form (as opposed to the relapsing/remitting.) If IVIG failed to help him, I am guessing that he does have the progressive form. How much prednisone is he on, & is it giving him anything back? Usually when IVIG doesn’t help CIDP, plasmapheresis doesn’t do much for them either. For a neuro to treat a 21 year old with CIDP & be content that he is not improving, just maintaining, seems ludicrous to me. He should be treated as aggressively as possible before further damage is done.
It has been hard enough for me to deal with this cruel illness & I began 5 years ago at age 48, I cannot imagine someone in their 20s getting this. I have a son who is 26 & in a wheelchair, but it was from a birth defect (spina bifida) & so he doesn’t know any differently. Also, he has no pain. Trust me, your son’s pain is very real, I know I could deal with CIDP so much easier if I had no pain & fatigue. After almost 2 1/2 years strictly in a power chair with no use of my hands, I now walk with AFOs & a cane, so I am very much like Kevin. I would like to help in any way I can, feel free to email me via the forum. My heart goes out to Kevin & your family…
AnonymousMay 15, 2007 at 10:37 am
He needs to have an EMG & an MRI to check for inflammation.
If more symptoms are showing then he is NOT in remission & his disease is active. Take him to a new neurologist ASAP. MDA (Muscular Dystrophy Association) clinics often time has Dr’s who are familiar with CIDP. You can call there to see if they can help you.
AnonymousMay 15, 2007 at 3:38 pm
Thank you all so much for your replies. Kevin’s symptoms began in jan/feb 2006. He ignored them for some time thinking they he had strained a muscle or worked out too much. It became obvious in May 2006 that there was something serious going on and that is when he talked to us. Things moved quickly from there with many tests being done to arrive at the diagnosis. Kevin has had two EMGs, one in June 2006 and one in Sept 2006. He was hospitalized late June, July of 2006. During that period, the drs did a ton of procedures – spinal taps, mris, cat scans, bone biopsy, gastro work, cardio work up, and kidney test. His major organs are great. He went in sort of walking, and came out in a wheelchair. He had OT/PT in house, then as an outpatient and has stabilized to where he is now. He is taking lexapro for his depression. He takes vitamin supplements, including omega3 and calcium. I also have him drink this green tea and ginger brew that I make for him. He was discharged from pt/ot in January because he was at a point where he could not make further gains. He has very little strength, he has hand and leg tremors which make it very difficult for him to write. He is lucky to have some very loyal friends who visit with him and take him out. He loves cars, plants, and our two dogs.
Kevin does feel that his neurologist dr is not really helping and as engaged as he thinks he should be. I think we do need to have a consultation with a dr who knows more about cidp and will try other things to improve Kevin.
Finally, I read some of the replies to Kevin. It made him feel good that there are other folks out there who know what he is going through and are interested in him and his well being. I think you will all hear from him soon. Thanks again.
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