I'm wondering if I'm the only one who has been given this diagnosis of CIDP who is not getting the IVIG or Plasmaphoresis or any of that kind of treatment. I have had trouble accepting this diagnosis even though my symptoms do seem to be it. My blood work, evidence of the IgG and IgM ... I can't even remember what they are, and the nerve conductivity are what seem to have clinched this with my doctor and hematologist. It took a year of steroids to correct a bout of AutoImmune Hemolytic Anemia that went way out of control before it was caught, but that was three years ago, now. I remain very confused about all of this. There is severe pain, treatment is gabapentin, 1200 mg a day, tramadol and naproxen as needed. I have a neurostimulator implanted and also stenosis and nerve damage from a failed back surgery. But this CIDP....I am very confused.
In the meanwhile, I'm actually a pretty nice and upbeat person, I am retired so this is much more managable than it was. I really could not work any longer with pain and such. I feel as if I am a pile of complaints and that when I try to explain myself, good grief, I'm like a little black storm cloud repeating what has happened the last three years and why I limit some things in my life.
Had a friend once in Seattle area with your name:) I have never had any treatment recommended for CIDP and have had it since around 1998. I am so intolerant of so many drugs, and other diagnoses don't mix with the drugs, that I just haven't done it. I have my debilitating days, that's for sure. I know so many folks have done well on different things but others don't. Prayer is about the only thing that works for me:)
What a journey you have been on / are on .... I had 6 months of IVIG it made me worse - now I'm on nothing. I know there are some auto immune suppressants that will be discussed at my next appointment - the side effects could be a challenge - I have a bit of time to make a decision.
At the moment I focus on exercise, diet, vitamins, plenty of water, rest, meditation, massage, soaking feet in salt water daily ( its hot here ) - anything that is gentle and gives my body a chance to sort itself. Sometimes hard to manage our thoughts or the amounts of thoughts - very confusing as we try and work it all out.
I select a range of things for three months, decided what's working - let the rest go and bring in a couple of new things. Its an ever editing process and of course learning from others through this site - is a wonderful gift to me.
Jamie, that is some wise advice. It does help. Maybe switching the focus of how this is affecting me to simple taking care of myself is a good way to go. I really like your approach. I'm not sure that I'm getting what I need from my neurologist, the focus is just on symptoms and progression. Yes, I really am grateful for what you've said. Thank you very much. Merrilee
Thank you, Lori. You're right about prayer. Thank you for letting me know that I'm not the only one!
Lori said:
Hi Merrilee,
Had a friend once in Seattle area with your name:) I have never had any treatment recommended for CIDP and have had it since around 1998. I am so intolerant of so many drugs, and other diagnoses don't mix with the drugs, that I just haven't done it. I have my debilitating days, that's for sure. I know so many folks have done well on different things but others don't. Prayer is about the only thing that works for me:)
This is just the beginning.....hold on to your hats...it's going to get worse.....
I been waiting because of where I live I couldn't get in to see spiecalist I been tell you all that for over a year here...and you pass probably my statements on as crazy....but maybe you will hear me now? or still not?
But it is true.....look at what they are trying to do now to EMG's and VNG's to the doctors right now....not pay for that service...how does that effect your testing of finding out what is wrong with you? It does help the doctors...so what is next of the chopping block?
Well.....they didn't want to read the Obama Care The dem's were told just sign the bill...and read it later....Yes...and now so far 17 Dems want to stop Obama Care.....so look at what is in it what it is doing to the medical field to us.
So the doctors are going to do what they are going to do to get paid aren't they.
Maybe this is only the beginning?
So.....as I moved finally to get care....now I can go to a spiecialist I sit and wait for the referral from medicare/medicade wondering if I will....not sure if I still will get in just to see a Neuro doctor let alone testing done/
So is there light at the end of the tunnel....I don't know....
All I see is more confustion and more distrust of our system going on...and not sure