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Living with Polyneuropathy CIDP, GBS, & CMT

Back & Forth


#1

Please forgive me for not coming up with a better title but words escape me in trying to convey my feelings...I was diagnosed with CIDP in Nov. 2010. My Neurologist did not put me on IVIG due to the fact I have stage 3 Kidney disease. I was on Prednisone for a few months then taken off for fear of causing more damage to my kidneys...My symptoms have in the meantime slowly worsened and now my Neurologist is sending back once again to the University of Florida Neurology department to see a Neuromuscular doctor... For the life of me I would love for someone to tell me what their take is on this back & forth with my Neurologist...Since I cannot be put on IVIG, I can but only wonder what good can come from this...In 2012 I was sent to U of F to see another Neurologist to get a second opinion, which he confirmed as CIDP...I am at the point of just resigning myself to the fact that since my Neurologist is unable to properly address this, therefore I am being sent off to a Neuromuscular Doctor...If anyone would like to share with me your thoughts and feelings, they would be greatly appreciated...Thanks!

My wife who has Sjogren's Syndrome and is the only one working, is trying her very best to not only deal with my problem but hers also...


#2

Neurologists don't see a whole lot of CIDP patients in a lifetime if any at all. Your current Neuro is out of tricks for you, so to speak, and is doing the best he can do for you which is to send you to a place where Neuros frequently see CIDPers. If you are having brain surgery, you want the brain surgeon who has done thousands of them, not one or two of them and the same goes for your CIDP with your kidney condition. I hope the docs at U of F can come up with a treatment plan for you that can bring you relief and still be easy on your kidneys. Take care.


#3



Sunshine said:

Neurologists don't see a whole lot of CIDP patients in a lifetime if any at all. Your current Neuro is out of tricks for you, so to speak, and is doing the best he can do for you which is to send you to a place where Neuros frequently see CIDPers. If you are having brain surgery, you want the brain surgeon who has done thousands of them, not one or two of them and the same goes for your CIDP with your kidney condition. I hope the docs at U of F can come up with a treatment plan for you that can bring you relief and still be easy on your kidneys. Take care.


#4



Roy said:

Thanks Sunshine for your input...God knows I need all the help I can get...I have truly found out who my true friends are these past few years...

Sunshine said:

Neurologists don't see a whole lot of CIDP patients in a lifetime if any at all. Your current Neuro is out of tricks for you, so to speak, and is doing the best he can do for you which is to send you to a place where Neuros frequently see CIDPers. If you are having brain surgery, you want the brain surgeon who has done thousands of them, not one or two of them and the same goes for your CIDP with your kidney condition. I hope the docs at U of F can come up with a treatment plan for you that can bring you relief and still be easy on your kidneys. Take care.


#5

You should ask your doctor about Plasmapheresis. My wife has cidp. She had a bad reaction to ivig so now she has Plasmapheresis treatments.


#6

Thanks Charlie, I'll make sure my wife and I tell the Doctor what you have said. I always thought of myself as a pretty tough guy, and worked really hard for many years installing floor covering and not even wanting to take an aspirin. I had both knees repaired for torn meniscus and went right back to work six weeks later. It wasn't until I had a Laminectomy @ L5 S1 that I took any pain medication. Six months after back surgery while waiting at a traffic light, my Ford van was rear ended by a car doing what police estimated to be 55 mph. I herniated C5 C6 and I overcame that, but now with this CIDP I have watched my ability to work at the trade I loved so much, the ability to Fly planes, something I did for 20 years as a Private Pilot / Instrument rated, to enjoy time with friends and family and have now become a burden to my wife who has to carry the load. For many years I never understood why people would even consider, I mean even consider taking their own life, but now I am sad to say, I truly do understand. I often wonder what did I do that was so wrong as to have caused such pain for my wife and family. Thanks Charlie for your suggestion...Sorry for the long reply...

Charlie said:

You should ask your doctor about Plasmapheresis. My wife has cidp. She had a bad reaction to ivig so now she has Plasmapheresis treatments.