I was diagnosed a year ago with CIDP. I have seen two different neurologist, have try ivig and high does methylprednisolone and per my doctor I am in " remission" from cidp,with that said I'm not happy with where I am at,I have been on at least 10 different medication for nerve pain in my feet with little to know relief. I have bilat foot drop and my foot pain is to bad to tolerate wearing my AFO. I have a termer with both hand and makes it very hard to do something. I'm sick of having no way to make my life better due to my pain level and feeling different then everyone else.
I am really surprised that your doctor has said you are in remission from CIDP just a year from your initial diagnosis! The symptoms that you seem to be having still are all systematic of CIDP. If you are truly 'in remission', congratulations! I would seek another opinion however, if your symptoms continue as you stated. With not knowing your health status before being diagnosed with CIDP, perhaps you are one of those who respond extremely well to the IVIG and medication. Hang in there.
Yes, I absolutely agree. From my experience 'remission' is really when it has settled and you aren't flaring up any more. I was diagnosed with CIDP in 2012 and I have to say I've only just reached a plateau whereby I'm having maintenance IVIG when needed, other than that my symptoms have calmed and I am off the steroids.
I'm sure you've been told (well, I hope) that the quicker you get to this, the more chance of hopefully lessening the damage done. So I'd fight for anything you can get, even it means asking 2 or 3 neuros!!
Hot episom salt baths while using "cupping" therapy has helped me as much as drugs..Plesae ask your DOC 1st:
https://www.youtube.com/watch?v=8Mlw7u0H7ZE
Avalible at: http://www.ebay.com/itm/New-Kit-Vacuum-Suction-Chinese-Cupping-Jar-...
* I use a little "Arnica" cream under cups..Again please OK with docs 1st OK?
Per my 2nd opinion I was a non-responder to IVIG I only did 3 rounds four days in a row once a month. When i went to my 2nd opinion, I was told then since I did not have a much responce to IVIG why keep doing it , I was then put on decadron once a month for four day for 6 month and if my symptoms had not gotten worse and had some improvment then i was "in remission" and i would know by my symptoms if i was not anymore. I went ahead and sent my records to another doctor to see if i can be seen for a 3rd opinion now I am just waiting to hearn back from them.
Smannakee said:
I am really surprised that your doctor has said you are in remission from CIDP just a year from your initial diagnosis! The symptoms that you seem to be having still are all systematic of CIDP. If you are truly 'in remission', congratulations! I would seek another opinion however, if your symptoms continue as you stated. With not knowing your health status before being diagnosed with CIDP, perhaps you are one of those who respond extremely well to the IVIG and medication. Hang in there.
Yes "perhaps you are one of those who respond extremely well to the IVIG and medication"
Hopefully...anyone else out there wean off IVIG's????
I use episom salt almost every night!!! I still work a 40 hour week and some days i end up driving home with my shoes off!! The episom salt makes it tolorable enough to be able to cook dinner and make lunches when i get home but not enough to put my AFO'S on or do much else after work.
Loni Hart said:
Hot episom salt baths while using "cupping" therapy has helped me as much as drugs..Plesae ask your DOC 1st:
https://www.youtube.com/watch?v=8Mlw7u0H7ZE
Avalible at: http://www.ebay.com/itm/New-Kit-Vacuum-Suction-Chinese-Cupping-Jar-...
* I use a little "Arnica" cream under cups..Again please OK with docs 1st OK?
I have weaned off IVIG, but by taking Imuran (an immune suppressant), which sorta takes the place of the IVIG. My neurologist told me that Imuran needs months to take effect, and that seemed to be the case. But after several months of taking it, I noticed that I felt better between IVIGs. I gradually lengthened the interval between IVIGs, and have now been off completely for over a year. Imuran has its own issues, but I much prefer it to the previous situation.
Loni Hart said:
Yes "perhaps you are one of those who respond extremely well to the IVIG and medication"
Hopefully...anyone else out there wean off IVIG's????