Oh, Linda,
What a spot you are in, dear one. There has got to be a doctor out there
that can and will help you with your knees.  The PT certainly won't hurt you
and I've really raved about water therapy but when you have bone on bone,
especially your knees, I just can't see that taking away the pain.
 
Isn't there somebody out there that has a doctor with enough guts to help
Linda?  At least lead her in the right direction for the right provider? 
Quality of life is a goal for us and right now, Linda, you must be in such
pain that the quality is pretty tough.  I sure wish I had an answer for you.
 Don't give up...right back into the Prayer Pot you go...Hugs..Jeanne
 
-------Original Message-------
 
From: L T CHERPESKI
Date: 8/11/2009 10:41:09 PM
To: TM List
Subject: [TMIC] Need some help please
 
Hi everybody,
 
I'm hoping you guys can help point me in the right direction.  There are so
many of us on the TM site there's just got to be someone who knows somebody
with the same or similar dilemma. 
 
Most of you know that I've had Sjogrens for 20+ years (unfortunately,
progressive and aggressive) and 7 yrs ago TM came into my life.  I am on
heavy chemo meds (Imuran and Rituxan infusions) to suppress my immune system
to keep it from attacking my body.  Last Sept I had a "minor" surgery to
repair a torn meniscus in my knee, and my body went into the longest,
hardest relapse I've ever had.  I'm just now getting my arms and hands "back
 - I think this is as much as I'll get this time.  Almost everything else
has gradually come back.  My one huge problem is that my KNEES took the
biggest hit - my doctors said it was because they were the weakest part of
my body at the time.  I have infected knees (right one to the bone) and am
walking (trying) on bone on bone knees.  They both need to be replaced.  And
 I have TM, so already my walking is not that pretty.
 
I was sent out of state to a surgeon who does a special knee replacement
surgery that is less invasive.  Long trip, big disappointment.  He will NOT
do surgery on me either because of the "aftermath"  - said it would be like
doing brain surgery due to my autoimmune diseases.  Well that's fine - I
have always wanted to do anything but the surgery, but was given no OTHER
choices.
 
And, I am still being given NO options.  So I've done some of my own
research.  What about physical therapy to get my thigh and quad muscles
built up so they can take some of the load off my knee joints? (I'm a fairly
small person so we're not talking about losing 50 lbs and that would make
things all better)  Water therapy?  I'm not quite sure how to get these
muscles built up when my knees hurt so bad I can hardly bend them, but there
has to be a way.  My doctors have kind of given up on me, which at first
shocked me, now I'm just really mad.
 
Any ideas would be much appreciated.
 
Thanks guys,
 
Linda
 
 
 

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