Pauline, I saw that your post mentioned 15 years! You have had cidp for 15 years? Is this correct?
Pauline said:
Hi Johnz,
I have had a tremor in my right hand now for about 15+ years and it is getting worse. One of the Neuro's I was sent to by my reg Neuro told me it is a Familial Tremor. No one had ever given me any treatment for it over the years. It has got worse over the past 8 years or so, same thing with spilling things, eating is quite the challange any more...When I get nervous or upset at all, it is really bad. There is also alot of pain and I drop things all of the time, the numbness in the mix with everything else is quite a battle just trying to do anything is nerve racking!!!
If anyone hears of any treatments or anything I would like to hear about it too...
I developed multiple blood clots in my left leg and in both lungs from the IvIg- so I had to go off from it. It was helping me though. I was then put on massive doses of steroids, IV and that also helped. But I certainly couldn't stay on that high of doses. Then Mayo Clinic slowly eased me over to Cellcelpt. A dose that is considered massive to most doctors. I occasionally get an infusion of SoluMedrol. I got the IV today. I only get 250mg now. It took about 15 minutes. I went from being paralyzed to walking with afo's and a cane. I still have bad days, but most of my life is back. I was told by Mayo and Cleveland Clinic that I would never walk again due to the amount of damage, but I had other plans. But I am a bit scared at times as I see others slide backwards. I can't bare to do that- being paralyzed and depending on others to take care of me, wipe my behind, etc. And I just can't bare to put my family through it again, either. How does any of you keep your spirits up when you have a bad day?
nancy said:
Another way to look at is what happens if there is another treatment that can stop the decline. I can relate to the not wanting to ask. My pain is increasing and the pain med isn't working like it used to. All the med's have so many side effects so I try to put up with the pain. I have heard there is several IG types, have you asked your doctor? Stumbling is embarrassing but humbling at the same time. I plan to make today the best I can. Peace
Lindae said:
Yes, I trried IVIG but it didn't work for me so my neuro had me go to plasmapheresis 3xweek for 2 weeks. It helped as much as could be expected and the azathioprene I take is keeping me from relapsing in a hurry. It's been 2 years since the plasmapheresis and I have been going downhill very slowly and I don't want to ask what happens when I can't walk again.
I too have very little balance and if I want to bend over I'd better have something to hang on to if I don't want to fall on my face.
Hello Jeanbell. I think everyone has there own unique way of uplifting their spirits. Two years ago I had cancer on my lip and had a major surgery on it. I was depressed and did not want to go out in public. A deer showed up with a severely injured leg. After finding there wasn't an organization who could take care of him, I did what I could, feeding him, allowing him to feel safe in trusting me and loving him.(I began calling him Spirit) He made it through two cold winters and I just gave him an apple tonight. The times when I feel like I don't have the energy to deal with cancer and now CIDP he comes for a visit. I take a deep breath and marvel at the wonders that surround me. I hope my story helps in some way.
Hello Nancy, you must be a lovely person to get a wild animal to love and trust you.Your story brought tears to my eyes.You sound like a very positive person. Shirl
nancy said:
Hello Jeanbell. I think everyone has there own unique way of uplifting their spirits. Two years ago I had cancer on my lip and had a major surgery on it. I was depressed and did not want to go out in public. A deer showed up with a severely injured leg. After finding there wasn't an organization who could take care of him, I did what I could, feeding him, allowing him to feel safe in trusting me and loving him.(I began calling him Spirit) He made it through two cold winters and I just gave him an apple tonight. The times when I feel like I don't have the energy to deal with cancer and now CIDP he comes for a visit. I take a deep breath and marvel at the wonders that surround me. I hope my story helps in some way.
Wowww i have learned something. I never knew this was apart of it. I remember my grandfather had this in his hands makes me wonder if he had it. This is a really awlful disease. Thank you for sharing! gentle hugs
Is pain a factor with the tremor in your hands? I have only been dx'd with CIDP for a year, although I had symptoms for almost a year before the dx. My hands hurt making it hard to write or type and opening plastic bags and jars is almost impossible. I will hold positive thoughts for you on Friday's MRI! Peace nancy
I had these tremors really bad at the beginning almost four years ago. I could barely get my food to my mouth as it would fly off from the fork before I could get it to my mouth. Not sure what caused it. I still get it but not nearly like I did. The Neuro thought maybe it was from either the Cellcept or Neurontin...still not sure what it was from. I do shake much worse though, when I am really nervous about something.