Peri neo plastic cerebellum disease related totaling chemo

Mimi, your story really caught my attention.  I'm so sorry about what you're dealing with -- and you, too, leggo.  

I'm really curious to know, how is this rare autoimmune condition dx'd?  And how soon after chemo does it normally appear? Can it possibly come on several years after TC?  And does it always include vision problems?  I'm asking b'cuz around the holidays, after a trip to Las Vegas, I became terribly sick -- literally the sickest I've ever been in my life -- starting with an indescribably horrible sore throat.  I ended up going to Urgent Care twice, where they dx'd bronchitis and pleurisy and rib inflammation; then finally to my onc (because I wasn't getting any better) who, after some bloodwork and a CTScan dx'd bone mets, which we are still trying to sort out re. their extent.  But the odd thing is, worse than the rib pain, I feel like I have MS, or what I think MS or a muscle wasting illness would feel like, including pain and extreme leg weakness in my right leg/groin -- to the point that I've gone from walking 5 miles a day to, at times, struggling with a cane.  I'm trusting my docs will get it sorted out eventually, but your post certainly caught my attention!

Thanks for any additional information you can share.     (((Hugs))), and prayers that you and leggo can both get to a point of remission.    Deanna

Hi Mimi. I initially had four plasmapheresis treatments, and this past year had six more. I've not had the IVIG. The plasmapheresis helped a little, but not a lot. It did get me out of a wheelchair however and slowed the incessant shaking. I have to hold onto walls and furniture to shuffle around. A cane and walker just didn't work for me. My speech did not improve much.. Also, I was told recently that perhaps the antibody is slowing the progression of cancer, so I'm kind of in limbo as to what to do next. What seemed to help more was an anti-malarial drug called chloroquine. After starting that, I was able to use my arms again. I have not heard mention of "Retuxin". I'll have to do some googling. I'll be thinking of you and hoping with all my heart that you find something that works a miracle.

Hi Deanna. I don't want to step on Mimi's toes, because it was her post, but I'll answer your question and I'm sure if her experience is different, she'll share that with you. As to how it was diagnosed, ultimately through a blood test to check for a particular antibody, CV2, if I remember correctly. Long before that though, I had numerous neurological issues that finally led to the blood test. I did have taxotere several years ago, but doctors don't think it was the cause, but admit they don't really know. I think it might because I had the usual numbness and tingling of my fingers and toes, which never went away. The syndrome however seemed to come on overnight. I woke up to severe muscle pain in my arms and legs....way worse than what you get with the flu. By the next day, the pain subsided, but I started to roll on my ankles while walking. A few weeks later, my legs seemed like they lost their muscles and I kept falling down when I tried to take steps. A couple of months later, I couldn't use my arms and shortly thereafter, my speech was affected, like my tongue wasn't moving. My vision was never affected, but I did have constant eye twitching and heavy lids and at one point, my eyes were not tracking together. Even up to this point, it was still being written off as neuropathy from chemo by my doctors, including a neurologist.  The neurologist did however think something strange was going on because he did a little test...had me close my eyes while standing and I immediately fell over, but he didn't quite know what to do about it. My husband couldn't shower me anymore without getting soaked so one evening we tried the tub instead. He lifted me in.....I said I'd be ok while he started dinner so he went back downstairs. A few minutes later, and I swear it was the hot water, I was completely paralyzed and sunk under the water. Thank gawd my dog started barking and my husband came to lift me out before I drowned. That led to the ER and FINALLY somebody saying it had to be more than neuropathy from chemo. At that point, an intern fresh out of school suggested "paraneoplastic syndrome" and they did the blood test to confirm it. I sincerely hope with all my heart you don't ever have to go down this road. I'm so embarrased for my children by it all. I am grateful though, that physio and treatment have helped a little bit. At least I'm not drooling anymore and can feed myself again. It's been a tough road.