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BMT from unknown donor question.....

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#1 WeepingWillow2200


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Posted 10 August 2013 - 03:14 AM

So I had a BMT last spring and although I did have some minor and major hiccups in the  process I ended up alive and was well on my way to recovery.  Well, seven months down the road I was having some issues with falling. I would keep falling over or lean up against the wall in order to walk in my apartment and I fell numerous times to standing in the bathroom.

I was not feeling well at the time so I had assumed it was maybe my equilibrium being off-balance. It ended up getting so bad I would fall on the floor and not be able to get myself back up or even pull myself up onto the couch. By the end of that week I was losing complete control of my legs and arms my father brought me to the hospital to get look at and by the next day after we got to the hospital I was completely paralyzed. I was not able to move any part of my body  I could barely move my eyes and I had lost all reflexes

No doctor knew what was going on with me, I then became the guinea pig of the hospital. Okay longer story short I was diagnosed with Miller Fisher syndrome Variant with Gullian beret. Now out of every possible thing the hospital told me that could go bad, which was in lot of information, I was never once mentioned anything about this. When I asked my bone marrow transplant doctor that he had stated it's very rare and he has never seen a case of his own with one of his patients. So after numerous numerous tests in different department seeing me we started to figure out a little bit of information. It really sucks having Something that no one can tell you anything about. When I googled the syndrome it doesn't even bring up much because it's so rare they have no information on yet.

Enough blabbering my Question is has anybody else had this happen to them and if so how long did it last for? November will be my one year mark of having this and he said it can take anywhere from Months to even years and there is a bout 5050% chance I'll be back to almost normal.  I have major neuropathy and pain in my hands and arms and in my neck and my spine as well as numbness in hands anddd feet. but if anybody else has this syndrome or has had it you could please talk to me so I don't feel like the only fish in the see I would really appreciate it thank your

#2 Tex


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Posted 10 August 2013 - 10:42 AM

You might want to cross post this on the transplant forum. 

I have fallen a lot.  Most recently I fell about a month ago while weed whacking.  I'm over nine years out from my SCT.

Since my transplant I've broken both shoulders, shattered a knee and gotten off Scot free with a number of other falls.  I'm the poster boy for post-transplant falling, I think.

I wound up in PT for my back immediately after my SCT, I mean I got out of the hospital and went to see the doc.  While my therapist had me, she was also concerned about falling and wouldn't release me until I could go up and down a flight of stairs without holding the rail. 

Maybe your Miller Fisher diagnosis is something we are all susceptible to but most of us don't pursue it for a variety of reason.  It's beginning to look as if autoimmune diseases might be something we run a risk of and I hope they'll start studying that in depth, I've written to the Hutch about it.  I'm noticing a lot of us are dealing with autoimmune issues.  Anyway, maybe Miller Fisher is another thing for us to be on watch for (or maybe it's an autoimmune thing itself)?

Not all of us go through falling but you're not alone.  I don't fall as often as I did during my first five years but two of the breaks I mentioned above were after that period.  One shoulder and the knee happened roughly two months apart.

Is there any correlation between it and your neuropathy so far as you know?  Sounds like they could be related.

Anyway, hope to see you on the transplant board.  I think the folks over there could benefit from your story.  And who knows?  Maybe someone knows something about your situation.


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