My health is not good.
For those not aware, I had damage to my spinal cord on January 5, 2013
that I had been working hard to recover from, spending 5-6 hours every
day working on recovery. Things were going very well until August
2014. At that point, I could walk for about a mile, stand for about an
hour at a time (albeit with pain) and even do things like take the 'L'
train in Chicago which entails walking up and down many flights of stairs.
Starting in August 2014, things got gradually worse, something the
doctors said wouldn't happen... I got weaker and in MUCH more pain. By
January 2015, I was no longer able to walk with a cane, and instead
needed a walker. By April 2015, I could only walk very short distances,
and needed a wheelchair for longer ones, and the pain was/is still
getting worse.
The doctors were stumped for a long time. My neurologist gave up, said
he couldn't find anything. My physiatrist also ran out of ideas, but
kept looking and doing his best to help with the symptoms.
Eventually, I tried a Rheumatologist, and he found that I have a disease
called Sjögren's syndrome. This is an auto-immune disease that is best
known for giving people dry mouth and dry eyes, but can attack any part
of the body. In less than 5% of the cases, it attacks the spinal cord,
which appears to be what is happening in my case. I went to Mayo Clinic
for a second opinion in May, and at first they scoffed at the idea that
i could possibly have Sjögren's, because it seemed to very unlikely that
I'd have two very rare problems attacking the same area of the spinal
cord. But after they did all of their testing and examinations they
changed their mind and confirmed this diagnosis.
We have been using steroids to suppress my immune system (since
Sjögren's is an auto-immune disease -- it means my immune system is
what's attacking me). This has helped, but is not a long-term solution,
since the problems the steroids cause is almost as bad as the disease,
and in the long term, steroids can cause some much more serious problems.
So, next week I'm going to start chemotherapy (to suppress the immune
system, it's not for cancer in this case) which is the best long term
solution they have. The studies they did showed that it works in 9/16
cases, so that's more than half, so hopefully it'll work for me. We'll
see. The best they can do, though, is drive it into remission. There
is no cure.
Hopefully that's not too much info...
-SK
On 6/25/2015 3:40 PM, broehmer@xxxxxxxxxxxxxxx wrote:
Scott,
I'm curious and you certainly don't have to answer. How are you doing?
There haven't been
any updates on your health on Profound for a while.
Bill
midrange.com
