AnonymousJanuary 28, 2007 at 10:27 pm
I have using he “Search” for an answer to this and thought of doing a poll….but I cannot think of the correct phrasing to answer my question…
Is there anyone here who is currently not getting any kind of treatment..??? I was on neuronton for about 4 or 5 months (100 mg(?) per day) but am currently not taking anything… My neurologist said that the side effects were far worse than what I have to put up with now… My residual effects from the CIDP have not changed for a year now… I guess this is as good as it gets…
I am just curious if there is someone else not taking any treatments at the moment…
AnonymousJanuary 28, 2007 at 10:38 pm
Not sure if you mean just CIDP, I have GBS and I never took any meds for pain. I also have to say that I think my tolerance to pain is higher than most people. Any discomfort that I have had was not consistant and never predictable so I could not see taking any meds for something that turned up here and there. Needles and Pins, burning, itching, zings and zaps. Cramps in my hands and feet. Electrical shocks that flew up an arm to the finger tips to burst like a fire cracker and then nothing! Same kind of shocks that went down my legs to explode at the tip of a toe! I have had very few headaches and any weakness in muscles like my back that was severe pain relaxed instantly when I sat down. Hope this helps and if not what you want it will be useful to someone! That is the great thing about this site! Take care everyone! 🙂 I think if I was going to have the cronic form it would have given some evidence by now?
AnonymousJanuary 29, 2007 at 12:08 am
I have CIDP and I stopped progressing three years ago. I am not on anything for the syndrome. I never had pain unless you call extreme teeth gritting numbness pain, so I was never on a pain medication. I’m not on a pain medication (doctor said it wouln’t relieve numbness) because I never needed one, rather then caution about side-effects.
AnonymousJanuary 29, 2007 at 2:21 pm
no I am not on any pain meds due to the side effects that it has had on me . I am one who can go a long time before things begin to flare up really bad again. so the only things that I take is my treatments of ivig as needed. and tylenol for the headaches, and i do have a muscle relaxer for when my muscles begin their ritual of annoying pains other than that I have been doing really well. makes sure you know your limits.
AnonymousJanuary 29, 2007 at 2:50 pm
The motor aspect of my CIDP relapses but then automatically goes into remission, and the sensory aspect is progressive and doesn’t respond to treatment, so I don’t have treatment. I have some pain, but can’t take the normal meds because they make me ill, so I take aspirin which helps take the edge off it.
And life goes on…
AnonymousJanuary 29, 2007 at 10:54 pm
I have not had any treatments at all…except the neuronton for a few months after diagnosis… My neurologist asked us to consider IVIG or steroids, but by the time I received my diagnosis, I decided that my stength was coming back… What really scared me was getting weaker and weaker over the two month period before diagnosis… Once I got a “name” for what I had I was able to concentrate on how to alleviate the symptoms… i got plenty of rest and just knowing what it was reduced a lot of the stress… but then it was time for school to start again and I faced a whole new set of challenges…trying to teach special education classes and take care of myself at the same time… Impossible..!!!
I know now that I will never be any better than I am right now… I had hopes at the beginning and put off applying for a disabiltiy retirement, but after a year, I knew that this was “as good as it gets” and I have given up on any kind of improvement that would put me back to 100% of my pre-CIDP self… However, I keep thinking that more in the way of treatments may have helped, but like I said, my neuro said that if I was coming out of it without any, that I would be better off not taking a chance of treatments with all the side-effects involved… He left the door open as to if I rhad a relapse, I may need to start on IVIG or steroids… My way of thinking is that if I did not need them the first time around, then I may not need them after a relapse…
I have just been wondering how many people are like me….going into remission with little or no treatment for the CIDP…
Any other input is very much welcome…
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