been lurking, time to introduce myself
AnonymousMay 17, 2010 at 9:36 pm
hello, we are in the Florida Panhandle. married 20 years, 3 kids 32, 25 and 16yrs, yours-mine-and planned insanity! DH is a Britt transplant, he runs a scuba shop. I do hair. a simple life in the prettiest beaches in the world.
I found this forum and it’s wonderful members this winter when my husband was diagnosed with CIDP. After doing some reading I was feeling we have been lucky as he had quite a quick diagnosis compared to some of the painfully long searches some of you have had. We went to our General practictioner in Nov and had a diagnosis in Feb, after nerve conduction test, MRI and nerve biopsy.
Our local Neuro guy working with the doc in the Mayo have my Husband recieveing IVIG treatments once a month for six months(had two treatments now) so far he is still declining, so they have added a weekly steriod infussion for a month (gets his 3rd treatment tomorrow)
still no improvement and from what I am seeing it is only getting worse.
The lack of response from husband has the local neuro doc, as of our visit last week, scratching his head and questioning the diagnosis. arrrrg!
I had asked our local neuro doc about the SCT at Northwestern Univ. but husband’s nerve biopsy show that his nerve deteriation is atipical…..the mylin seath is distroyed with CIDP but his nerve core is also being affected….so doc doesn’t think he would fit the criteria….and tonight I read on the application that the age range being accepted is 18-55, honey is 3 years to old!!! perhaps I need to call anyway.
such frustration, so many unansered questions 🙁
but thank you all for sharing so much, many of my questions many of you have help with and don’t even know it! 😮
AnonymousMay 18, 2010 at 9:24 am
Glad to hear from you. I am a CIDP challenged person as well and if there is anything I can do to help just say the word. Confusion becomes almost normal with this whole thing so be assured you are not alone. Just keep reporting the symptoms, trying what is suggested if it makes sense and hopefully you and your husband will find what is right for you. As you probably have seen, it is never the same for people. Symptoms and treatment are all individualized so with much trial and hopefully less error you will get what is right in time. Please let us know how it’s going.
All my best,
AnonymousMay 18, 2010 at 9:49 pm
Meg, was it the doctor at Northwestern who said your husband didn’t appear eligible? I am 57 and probably also have axonal damage; however, I was accepted for an evaluation at Northwestern, so please do not discount the possibility for your husband. I highly recommend that you contact them directly, rather than relying on the advice of your own neuro.
BTW, age limit is 65, not 55 for this study.
AnonymousMay 18, 2010 at 11:31 pm
thank you all for the warm welcome.
Sharron I might have gotten those ages wronge! I have been doing a lot of reading, tired eyes you know! anyway my plan was to talk to the doc at Mayo, Dr Dimburg, when we went on the 1st of June for the follow up and also contact Northwestern also> I had not thrown the towel in on SCT quite yet!
May 19, 2010 at 9:01 pm
Well met Meg! Welcome to the Forum family. Glad to hear of the early diagnosis. Sorry to hear the damage is beyond myelin. Thanks for being such a good advocate for your hubby. Press for whatever treatments you think he needs/wants. Don’t take your first answer (usually “no”) for the final answer. I hope too you’ll not just accept that the nerve core can’t be repaired or new nerve connections made.
Hope you’ll get all the support, treatments, advice, and encouragement you need.
AnonymousMay 20, 2010 at 2:34 pm
I’ve replied to your PM, now allow me to formally welcome to the forum. You are right, the world is shrinking…now if only my waistline would do the same :rolleyes: .
Always remember doctors are only practicing medicine, they haven’t perfected their technique yet. So never stop pushing for what you want!
AnonymousMay 26, 2010 at 12:16 am
Your husband is not as atypical as you might think, there have been many of us with CIDP who have not responded to IVIG, Plasmapheresis or steroids. I have been on this forum for 8 years now & could name quite a few. Based on the tests he has had already, I would wager that his dx of CIDP is correct. As far as the Northwestern trial, I would imagine that he would probably be an ideal candidate; insurance companies would probably not want to spend that amount of money for someone who is doing quite well with conventional methods, particularly something as cheap as steroids.
As far as axonal or permanent damage, I am assuming it would be in his feet or lower legs? Maybe some in his hands? That does not mean that it is not worth arresting this illness; it will only get worse if left untreated. And trust me this CIDP can get much worse, at my worst I couldn’t even sit up in a wheelchair, raise my arms, use my hands, etc. And no amount of conventional treatments made me any better.
The SCT is based on the same treatment plan that I had back in 2003, use high dose cytoxan to wipe out the immune system & let it reboot, minus the bad antibodies. The main difference is the controlled environment at Northwestern & the time frame (17-18 days?) I had monthly cytoxan for 9 months, most have it for just 6, & probably ended up with the same result. Insurance paid $800 a month versus the cost of IVIG & PE. I think for them it was a “nobrainer.” One must be careful not to go in crowds, as to avoid germs & sickness at all costs. If you want to know more, just email me, or if you would like, I could call you…
AnonymousMay 30, 2010 at 8:29 pm
Meg, just to piggyback on Pam’s reply–nerves can regenerate, but it is a slow process at about a hair’s width a day. So figure many months and even years.
Several who have had SCT had, I believe, significant axonal damage, but are now hiking, running, etc. 6-8 months after treatment. Don’t let your neurologist put a damper on your hopes. They (neurologists) are conservative by nature. As I said to mine when he reminded me for the third time that I might have residual deficits after SCT: “Yeah, but at least I won’t have the disease, so I know I can only get better.”
I believe that SCT offers the best hope for permanent remission (no one likes to use the word “cure.”); the other treatments offer only a slowing down of the inevitable progression of the disease. Push for it and good luck!
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