New to CIDP / Poss from WTC 9-11
AnonymousMay 8, 2014 at 5:05 pm
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Hello everyone my name is Jeremy and I have CIDP.
I guess some background would help.
I was an Ems worker at 9/11 and after a few years of minor aches and pains and just working through them. You know age, the torture you but your body through all the time never thinking I had a disease or it was related to 9/11.
Shortly after 9-11 I was diagnosed with PTSD and I am still currently being treated for that with therapy and drugs. Then in 2007 at age 35 I had a stroke, just a minor one but still. Maybe someone trying to slow me down and to see what was really going on. I was blessed, I regained my ability to talk after they got the tick in my face under control which I will take meds for till my time is up. I also got my legs back somehow.
Then it was respiratory problems with obstructive sleep apnea, frequent bronchitis and or pneumonia, narcolepsy with cataplexy and to be a complete mess insomnia. There is a whole handful of drugs for this as well.
This whole time my feet have felt weird, different but I didn’t know what it was and I am not one to complain. Finally reported it to nuero and she ordered all kinds of test. So many diagnosis that just didn’t quite fit MS, Stiffman, so many. Went for a spinal tap and got stuck 7 times before they got fluid. Had to have an immediate laminectomy on T11. Nuerosurgeon couldn’t figure out how I was still walking with no fluid below that point.
So many other things between then and know too much to type with out it being a novel.
Nerve biopsy finally got me a diagnosis of non genetic cidp at this point I have lost both of my feet as far as feeling and pain. The disease started on my hands as well. Started IVIG last week 72mg or g over 8hours, load dose was 4 days straight. I have feeling in my fingers and probably have about 60% of my feet back. I ran the other day 15 yards, first time in 5 years and my family cried and celebrated. I still have pain and mobility issues so maybe after more treatments it will get better I don’t know. I don’t know what to expect with this disease, am I going to be permanently in chair, is it going to be my end, I just don’t know.
Pain management is going to quarterize 4 nerves from my spine to take care of pain from lower back shooting down both legs. I look forward to some kind of relief.
Sometimes I think my head is going to explode so much to process, so much that just doesn’t make sense.
I would appreciate any feedback, but has anyone heard of cidp being caused by all the stuffed breathed in at ground zero? This is what my nuero thinks.
Thanks and God Bless
May 8, 2014 at 9:10 pm
Jeremy, you have been through a lot and getting a case of CIDP on top of everything else is just not fair!
Although I guess it is plausible, I have not heard of anyone acquiring GBS/CIDP through inhalation alone. There is usually physical contact with some viral infection that triggers the autoimmune system to produce anti-bodies that can attack the infecting virus. When the anti-bodies begin to attack “self”, we have a case of GBS/CIDP. The insulation surrounding our nerves (Myelin) is often what gets attacked thus shorting out nerve signals to/from the brain. The result is weakness, numbness, paralyzation, and sometimes pain.
I’m glad to hear you have responded favorably to IVIg treatment. Since recovery varies for all of us, you are on your way to “your” recovery. I’m hoping you get back most of your abilities.
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