When I was a kid, I got very sick. I was about 9. My fever would get really high, and then all I remember is immense pain in different joints to where I couldn't use them. The pain would be in one set of joints one episode, then another the next etc. I remember going to the grocery store with my mom and brother one time, and I was fine on the way there and while in the store. But when we got back in the car, and I climbed in the back seat, I felt it coming on. My mom had to hit the breaks for something, and I fell on the floor in between my seat and the back of the front seats. It was so fast, just like that I couldn't use my arms or legs. When we got home, we had to get our neighbor to come pick me up out of the car and put me on the couch inside. I remember hoping he put me in a position to be able to see the tv without moving :) he did.
Fastforward to me turning 30. MAN. Things have been building up slowly, but about a month before I turned 30 it all went south. My feet and jaw joints gave out and became very painful. Surgery to break and correct 3 joints in my right foot happened in Oct. 2 joints with just metal screws healed fine, the main one with the metal plate and screws in it did not. After about 7 months of a broken foot, I had bone graft surgery in May. So far so good healing wise, will find out in 2 more weeks.
At the same time, this spring I was denied the muscle relaxers that seemed to be the only thing that worked at getting my jaw unlocked. My dentist said we were at the point where its just covering over the main issue and I needed to see a TMJ specialist. So I did. We started the regimen, which included an overlay of fake teeth over all my lower teeth in a non-removable (but not permanent) fixed place. It locked. Dr took it out and it unlocked, and then he tried again this time over correcting it and scaling it back slowly. It was fine for a while, but then locked again. That was 5-6 weeks ago, and it hasn't unlocked. After massage, ice pack, heat, numbing shots with him manually trying to open it more than once, TENS'ing (trans-cutaneous electroneural stimulation or something), soft food diets, spiritual meditation on God/breathing, we are at a point where I will see ASAP an oral surgeon to do arthrosentesis. I'll explain more later.
So, with all this going on, I got curious about the disease I had. It had been named Palestine Fever, but it was never understood and remained a mystery disease. Since it hurt my joints back in the day, and it seems weird to be the less than 1% of the population that has such extreme cases of arthritis and joint issues at age 30, I figured there might be a connection. So I looked up the original doctors. Below is my letter to them...
Dr.,
My name is Meagan, and I was one of the children
who was thought to have
caught Palestine Fever in 1990. My mother gave
permission for Scott and
White hospital to keep my blood for further
research. The main hospital
that treated me was Santa Rosa in San Antonio. I
had visited my
grandparents in Palestine TX just before becoming ill. I hope
you don't
mind me contacting you; I saw your name as one of the main doctors
who
worked on that disease. I was wondering if there had been any
further
understanding about the disease... particularly long term side
effects
if any.
The reason I am asking is that I am now 30, and have
significant joint
issues in my jaw and feet. 3 disfigured joints in each
foot, and
severe TMJ in each side of my jaw. I have had one foot surgery
to
correct the joints in the right foot, and will need the same in
the
left. When I got a second opinion, the surgeon said "it is clear
you
did not have surgery for vanity, anyone who looks at your xray would
see
you are in pain from arthritis." That made me wonder if there are
either
long term continual effects that have been discovered, or
the
degradation done at the time of the disease that has been revealed
as
possible, causing these issues now. The way the disease manifested in
me
back then was a spike in fever, and then the inability to move a
joint
or group of joints. The pain and immobility would move from joint
to
joint. The joint issues and concerns for arthritis are what
really
grabbed my attention with the issues I am having today. I have had
the
issues since I was a child, but they have increased in severity to
where
I find myself now. I also see a TMJ specialist, who is trying to
help
my jaw joints realign by changing my bite through orthodontics, but
the
muscles locking in place has been a challenge to this goal.
I
am not sure what further information is available. The only
information I
have is what came up in a google search on Palestine
Fever. I am not even
sure if it would make any difference at all for me
today, but I am curious
and feel it would bring a sense of
understanding. It might all be one big
coincidence, but on the chance
that it is not I would love any information
you could provide. If you
are not the correct person to be asking, would you
mind pointing me in
the right direction? I have included my personal email
account in the
To: section; I was not sure if .gov automatically filtered
yahoo mail as
spam.
Thank you for your time, very much---
Well, all 3 doctors I looked up said basically the same thing- we still don't know anything about the disease. 2 of the doctors said that my current issues could very well still be an issue with it continuing or a side effect of the degradation done at the time. I was told surgery is the only way to correct this type of joint disfigurement, because back in 1990 they didn't have the tools they have now to be able to be more proactively aggressive with degradation like it was manifesting.
Sooooo thats the story. That is why it has seemed like I send out prayer requests every other week with a new complication :) I'm excited to have this blog because I will have a place to update as things go on. And I am still on the hunt, this disease might still have some secrets that can be discovered! Somehow...
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