Newbie With PN and Elevated IgM
AnonymousJuly 8, 2011 at 5:28 pm
It’s been a fun year…NOT
A recent test revealed I have a MAG IgM titer level of 1:3200 which listed the following test criteria:
Moderately Elevated: <3200
Highly Elevated: >6400
I’ve been having sensory PN since early march – started in the legs and moved upward. Feet now frequently have mild to moderate burning feeling – lower legs sometimes. Skin sensitivity all over is diminished.
hands don’t burn but have lost a noticeable amount of sensitivity.
Face, back etc also have diminished sensitivity. My motor ability does not appear to be noticeable impaired – perhaps a tiny bit, hard to say for sure.
Additional testing made multiple myeloma unlikely (although no bone biopsy).
I have a MRI of my lower back with contrast scheduled next week – don’t expect structural problems. Perhaps inflammation.
Also I had prostatectomy in march and I’m currently receiving radiation as an adjuvant therapy
My next neurologist appointment is in 1 1/2 weeks.
I’d like to pose a few question to anyone – I’m very new at this…
What should I ask my doc?
Is a titer of 3200 fairly conclusive as the source of my PN?
Should I have a nerve biospy? What will it tell me?
Where might CIDP fit into the equation?
ANY help is appreciated!
AnonymousJuly 26, 2011 at 1:34 am
hi, there is a possibility that Rituxan may help with antiMAG IgM. There have been trials with some success, forgot the %. I need to dig up the documentation. My titre was 12,000 😡 Since insurance wouldn’t pay, I asked an oncologist to find non-hodgkins lymphoma lol which would be covered. He did a bone biopsy. Sure enough, there was NHL even though I did not have the usual symptoms, swollen glands etc. I got Rituxan for 2 years but unfortunately I didn’t get a winner. So, I am still in a wheelchair with numb feet, legs and somewhat numb hands. Heck, life is exciting, you never know what is going to happen. I can go anywhere I want in my power chair in Seattle. The buses are all handicap accessible. Life is good. 😀
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