Caroline50
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January 15, 2015 at 3:00 pm
Don’t be nervous. I’ve been getting IVIG every 5 weeks for 5 plus years now, two days in a row = 4- hour drips. I’m not sure of the dosage. I’m just tired of going now. It’s getting to be old. I’m looking for an alternative that isn’t so expensive out of my pocket even though insurance covers most of it. I’ve been doing quite well with it. My symptoms are 24/7 neuropathy in my lower legs and feet with mininimal firing. You wouldn’t know I had CIDP if I didn’t tell you. I do deal with tiredness though and lay down every day to rest. I’m 56 years old and had GBS at age 46 – severe case and was treated with plasmapharesis for that. Had a set back in 2009 and was diagnosed with CIDP because I didn’t make the 5-year window after GBS and the neuropathy started up.
January 15, 2015 at 2:52 pmI tried acupuncture as an alternative but so little difference. It did seem to stop some for the firing and burning but my CIDP which is in my lower legs and feet is also being treated with IVIG treatments – 4 hour drip every 5 weeks. I’ve been treating my CIDP with IVIG treatments since October of 2009. I thought I’d try acupuncture because going to treatments is getting old. I was diagnosed with a servere case of GBS in 2004, totally paralyzed except not intubated. Spent 100 days in the hospitals and the outpatient rehab. I had a set back in October of 2009 after gall bladder surgery so I didn’t make the 5 year window and was diagnosed with CIDP. I would like to seek alternative methods of treatments because my out of pocket cost for IVIG that insurance doesn’t cover is too much for me.
January 24, 2010 at 8:38 pmYeah try having GBS and menapause! Double whammy for me. Keep on smiling:)
January 24, 2010 at 8:36 pmThanks for posting your encouraging words. Glad you are doing good. Half full is better than half empty. Thanks
November 21, 2009 at 12:44 pmThanks alot everyone.
Yes it does suck being chronically ill. We do have to force ourselves to go out. My husband has wrapped himself up in his work and church work and I’m alone alot. It seems like I need to rest alot more than I like. It does help to get out and away from the house even if it is for a little while. I would like a support group for chronic illness. Until then this is a great site;November 21, 2009 at 12:36 pmSo Dick,
I see we’re about the same age, I’m a few weeks older :-). Anyway having my gall bladder out was suppose to make things better but I seem to have heartburn alot. I know I’m not suppose to eat certain things but it is often hard when you have others in your family wanting other things. Now that you’re gall bladder is out has things gotten better for you? Did you have GBS and then CIDP? I haven’t been able to go back to work which was only part-time but my doctor says I can apply for disablity after a year of not working I guess. Anyway thanks for the post.
Caroline
November 21, 2009 at 12:27 pmIsn’t this a small world. My doctor is Dr. Sullivan also. I have your phone # and I would like to call you sometime. I’m home most of the time because it is hard to get out much and go far right now being tired alot. Not sure if it is from all the medications I”m on or just will take time like to get back to what I called normal. Sometimes I feel trapped because I wish I had the energy to just go and do things like I used to. I’ve never had much sit in me and to have to sit and rest it is hard. I will give you my phone #616-895-4057. Hope we can get in touch. Is anyone else tired alot with CIDP. Hopefully my next treatment will help me get more on top again :-).
Blessings
CarolineNovember 20, 2009 at 9:00 amHi,
I live in Allendale MI so we are neighbors. I so would like to get a support group for people with CIDP/GBS. We have two other people in Allendale that had GBS but one is fully recovered and the other has some residuals. I was living with residuals of tiredness and neuropathy in my feet but this has increased. I was told rest is best and less stress. My life in 2008/2009 was anything but rest but now God has given me this time to rest and heal and it is hard to go from being busy to little business. I have to stay close to home right now because I get tired venturing out too long. I would like to stay in touch. My email is [email]cmulder50@hotmail.com[/email] if anyone lives near me and wants to start a support group 🙂
November 19, 2009 at 11:22 pmYes I did have an MRI on my brain and spinal cord. It helped them diagnosis my CIDP. I have increased neuropathy in my extremities. I also had and EMG. I’m so blessed to have good insurance because the MRI was very expensive. Sometimes I wonder though if the are just trying to make money.
I asked for a copy of my results because the neurologist just generalized it and didn’t go into detail with me. Don’t be scared. I figure for myself since I had to wait several weeks for the report it wasn’t serious.
