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Old 01-04-2007, 11:18 AM
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BEGLET BEGLET is offline
In Memorium
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
15 yr Member
BEGLET BEGLET is offline
In Memorium
BEGLET's Avatar
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
15 yr Member
Default Since PN

The first year no extra meds - no weight gain - was still able to "run" around (but kept losing baance and falling) to get to grocery store but had to stop working and move into a place with no stairs. Was able to still eat normally...

Second year - autonomic nueroapthy hit and PN got much worse too - actually gained 10 lbs iving on Ensure (could no longer digest regular food) but had to add multiple meds to control constant nausea - activity level down as well as all overall PN progressed signiificantly - exercise was wheelchair runs and housework as tolerated.

Third to forth year - about same as above - tried PT - etc. but no improvement - still lots of nausea meds, sleeping med, and tons of tylenol for suddently developing lumbar pain. Still able to function ok around house and in wheelchair when out.

Fifth to current (7th year) - Two years ago - lost 30 lbs in 2 months (thank goodness had gained that extra 10 to start with) - taken two years to gain back about 12 lbs - still need to gain. Lots of Nausea meds and still on liquid diet. Have been on IVIG for a year - has helped numbness, tingling in extremities but not autnomic symtoms at all.... Developing cardio-myopathy (due to autonomic PN or Amyloid? - currently being tested to see) Lumbar pain severe - take tylenol flr it -have tried PT, soft back brace, lyrica - without success.....

Taking right now sleeping meds, heart beta blocker, tylenol for pain (cant take opiates), lots of nausea meds, and IVIG. Activity level at this point very low due to nausea, back pain, and SOB/weakness - will be seeing lots of docs in the next few months.....

My blood pressue has gotten lower (docs attribute to cardiac complications) - and cholesterol in very high range.... No diabetes.

Thats my story and I'm stickin' to it....

Last edited by BEGLET; 01-04-2007 at 12:39 PM.
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