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Old 02-21-2012, 12:36 PM #10
zygopetalum zygopetalum is offline
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Join Date: Jun 2011
Location: washington state
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zygopetalum zygopetalum is offline
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Join Date: Jun 2011
Location: washington state
Posts: 417
10 yr Member
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I don't want to lead you down the wrong path if we have had similar symptoms for different reasons, as Mrs. D said, you do have typical symptoms of MG. But as you also said, you may have more than one thing going on and maybe something will help, I've learned a lot here from reading different posts.

I didn't have any noticeable PN symptoms until 1 1/2 to 2 years post surgery. The link that Glentaj provided did say there could occasionally be years between diagnosis and symptoms but I've never been able to find anything that clarified whether it could be that long AFTER the cancer and I didn't think it was likely. I also had septicemia in the hospital and between that and the surgery and prior pneumonia had massive amounts of antibiotics. Also in Glentaj's llink was the statement that calcium channel blockers could intensify that type of PN... I was on them when the PN symptoms began and they were so severe with that med that sometimes I could barely walk in the morning.

I've been Dxed with sensory neuropathy but have not had the sophisticated testing that many here have had, just 2 nerve conduction tests at a rehab clinic. (The PCP I used to have didn't like to refer to neurologists unless it was for stroke, ect., My current one offered a referral but my symptoms are better and I declined for now). I've never had any related bloodwork, I think they feel as long as I'm cancer free and breathing other things are secondary.
I had a very hard time getting them to pay attention to my complaints re: the steroid. I started having what appeared to be some autonomic problems and cut the dose myself in desperation and now they are all telling me to wean off it. I really don't know if I'm have autonomic neuropathy symptoms or adrenal problems, I just improve with less steroid.

Have you tried cooling you feet to help the erythromylagia symptoms? I started sleeping with my feet poked out from under the blankets and going barefoot all the time around the house. I later read on a site for that a lot of people do it, it really helped me.

Do you have any entrapment symptoms in your hands, carpel tunnel, ulnar, etc? Most of mine seem to have been form the steroid making something swell (tendon?) and pinching nerves. I can still feel a little but am much better on a lower dose of med, I couldn't even identify the entrapment symptoms on a higher dose, I just had diffuse pain everywhere and also had difficulty lifting my arms at times. Are you still having those problems off the pred?

I don't know how familiar you are with this site, there is a ton of info about different types of neuropathy. I hope you and/or your doctors can figure some of it out, I know what it feels like to be in pain and not get help.

Judi
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