As I stated in joining this forum I have been seen by a neurologist because of the loss of feelings in one foot. Then it was always sleeping and keeping me awake at night then it went to the other foot now it is in my hands I have IVIG treatment every 3 weeks now it has been over a year. No change just getting worse. went to the doctor he had me try lanacane patches to place on my feet. A little help ant night time I also take 1600mg neurontin no help. I need to know how and what I can do for the severe pain. What else is out there. I had the following tests Spinal tap EMG Blood test
What else is out there? I need to be able to handle the pain.
Have you considered a stem cell transplant? It's the only way I have ever heard of getting rid of CIDP altogether! I had one in April of this year and my CIDP symptoms are all gone! You may need to try one more form of treatment (pred/steroids) before you are able to apply, but if you have more questions, e mail me at: ■■■■■■■■■■■■■■■■■■■■
sorry to hear that steve,everything you explained i have,started with my left foot then hands then now my right foot. i have had all the test that you have had my doc. wants to start me on ivig but from what i have read there is no way i'm gonna do it cause ppl seem to get worse from it not better.i also had carpel tunnel surgery on left hand and still need more surgery.when i wake up my feet-ankels are not bad but by afternoon and night they get all swollen, does your feet get swollen also??.
Stephen , were you diagnosed as CIDP?Sounds like your doc is trying to address just the pain but not the underlying disease. There are treatments such as Steroids, IVIG, plasmapheresis , and imunosuppressants to try to stabilize the disease. As Wendy said (and i am doing also)SCT actually reboots your immune system to eliminate CIDP. I use gabapentin(neurontin) plus Tramadol and sometimes Oxycodonel to ease the pain but you still have to deal with the underlying CIDP.
My wife uses a 75 mg/hr fentanyl transdermal patch, we change it every three days, Works for her along with an oral pain killer Hydrocodine (7.5/500 and 10/325) for breakout pain. She is on oral steriods and meds to combat side affects. The spinal tap ,EMG and Blood tests are for diagnosis, they may even want to do a nerve biopsy to confirm. All of the neuro we have been to do not procribe real pain killers, so you might want to ask familly Doctor or get referal to Pain Specialist/
Good luck, stay tough, I witness this monster everyday with my beautiful wife Shelley, heck two years ago she was completley normal then slowly over about 2-3 months CIDP snuck up on her. Went from walking to walker to wheele chair in about 6 months. Just recently she is walking on her own for short distances and uses walker for longer one. Hope the monster stays away so she can gain strength.
I have severe pain in both my feet. I am also taking lotab 10 mg every 3 hours everyday and 50mcg fentynal transdermal patches every 3 days. But for me it might as well be sugar. I can’t sleep, walk or feel my feet. I wish there was somethinv out there that could take care of the pain. If anyone knows of a real pain killer please speak up. I am trying to get lined up for a bmt. We’ll see if I can get through all the requirements.
Good luck to all who are suffering with this horrible disease.
My CIDP came on with severe muscle cramps in different places all over my body. I also had massive muscle twitching/shakes at other times. I also had a crazy little dance move that had my arms and legs flailing about.
I had the EMG, blood tests and lumbar puncture showing elevated protein. My Neuro put me on prednisone for 2 weeks only.I was given Neurontin for pain, but (I believe) it is for nerve pain (which did not work for me). My Neuro refuses to give pain meds, but is a great believer in red wine and says I should drink a glass or two a day (I do live in Australia) . My GP keeps me in Oxycontin which works well for the cramping. The IViG once a month seems to keep everything else in check. So far so good. Not sure if this helps at all, but thanks for letting me ramble. Cheers mate
I have been diagnosed with CIDP and have been on steroids, neurontin and IViG for over a year now. I was receiving the IVig once a month and now have been receiving them every three weeks.
Mashrub said:
Stephen , were you diagnosed as CIDP?Sounds like your doc is trying to address just the pain but not the underlying disease. There are treatments such as Steroids, IVIG, plasmapheresis , and imunosuppressants to try to stabilize the disease. As Wendy said (and i am doing also)SCT actually reboots your immune system to eliminate CIDP. I use gabapentin(neurontin) plus Tramadol and sometimes Oxycodonel to ease the pain but you still have to deal with the underlying CIDP.
I have been diagnosed with CIDP and have been on steroids, neurontin and IViG for over a year now. I was receiving the IVig once a month and now have been receiving them every three weeks.
Mashrub said:
Stephen , were you diagnosed as CIDP?Sounds like your doc is trying to address just the pain but not the underlying disease. There are treatments such as Steroids, IVIG, plasmapheresis , and imunosuppressants to try to stabilize the disease. As Wendy said (and i am doing also)SCT actually reboots your immune system to eliminate CIDP. I use gabapentin(neurontin) plus Tramadol and sometimes Oxycodonel to ease the pain but you still have to deal with the underlying CIDP.
I was having constant, unbearable pain until a doctor put me on lyrica. I am now on 100 Mg. tid. I am also taking norco10-325 Mg. every 3hours as needed. I have also had IVIG treatments. I am on prednisone for short term. I still am in pain but it is more bearable.