resend

After 14 months of LDN, I began relapsing to a
point that my condition is considered progressive
now completely. I am to schedule Novantrone
treatment again in 3 months and another 5 round of
IVIG again in or out of hospital if I am still
relapsing at that time. Tomorrow is day. I stopped
LDN the day I went in the hospital because of need
to take pain meds again. For pain management, they
have added Oxycontin every 12 hours and percocet
for break through pain as well. They are also
concerned about my TSH numbers as my TSH is now >0
or undetectable but T4 is high. Say means my body
not detecting thyroid at all. I am to stay at
current dose but discuss with Pearce and have
blood work retaken on TSH and T4 to check my
number then.

2 weeks ago, I had attended a meeting to
participate in the fingolomid trial but was told
won't qualify because I use daily lung/asthma
treatment (advair) and show signs of continued
progression with little relapse where they are
looking for signs of continuing to meet RRMS. He
says I clearly don't anymore and that was 3 weeks
before my falls and relapse again. My previous
relapse was in 12/06 and previous relapse was
3/06 and a pseudo relapse involving 4 days of
hospitalization.

My neuro wants me to go to 4 week in-house MS
rehab program in Hickory NC or Wake Forest. I have
asked them to come up with a daily physical
therapy program in house with physical therapy
aide and in home worker for awhile through
medicare (since just out of hospital). They will
decide if I will be released tomorrow vs stay for
a few more days in preparation for transfer to
rehab. I am being told that doing a daily physical
therapy program would not be sufficient.

I have appt with my other neuro doc in mid July
who prescribed the LDN starting Mar 06 to decide
if I should continue on it. I am back to
dependency on walker and frustrated. I have other
medical issues which are worsening and effecting
my health. I wait tomorrow to see if I will be
released or not. My neuro doc wants me on
plaquenil to address the Behcet's portion of my
illness. I am frustrated.

Julie