I have been off since the end of May, and I have hardly left
the house. I did not realize how sick I
truly am getting until I could slow down a bit and not have to push to get ready for work. We have a very short summer and I am wasting
it being indoors. It seems every time I
have tried going out I end up in spasm and worried if I am on my own that
something bad is going to happen so it's safer to stay home.
My girlfriend's daughter is getting married and I'm invited
to her shower and her stagette (and of course the wedding). The day of the shower I don't feel great but
it's been so long since I have been out and interacted with people, besides my husband and my mom I want to
go. Putting on a brave face I drive
myself there but by the time I pull up I'm starting to feel that same sickening
feeling that my body is going to betray me .
I lasted an hour and left without too many noticing telling myself do
not make a scene at her shower, I make it to my car and sit for an hour before
I can stop spasming to drive myself home.
The day of the stagette a month later, I feel great so good I dress up as nice as
possible and even put on make-up!
Doesn't sound earth shattering I know but when you are sick it is a huge
accomplishment. Pleasantries from everyone some who are surprised to see me; I tell them fingers
crossed I'm having a great day, now
remember I have still not been diagnosed and I'm still not 100% sure myself. The party is a passion party, picture it lots
of laughs and the wine is flowing they are going to play a game I politely
excuse myself when I hear it requires moving and people sitting on each other's
laps (don't ask). I move to the kitchen
where I can still observe and enjoy the laughter, which is getting louder and
louder next thing I know I am ready to
scream in pain my muscles are going like they have been electrocuted I manage
to make it outside and get them to settle down, I am not feeling great but I am
determined to get through a day out.
Later we are going for dinner and I could not tell you the last time I
went out. As we are leaving for the
restaurant my girlfriend is going to follow me in her car because she is unsure
where she is going. As she waiting for
me she beings to beep her horn non-stop to make me hurry ahhhhhh another body
spasm is hitting and I am desperate trying to make her realize she needs to
stop but she is oblivious finally another person in her car realises something
is wrong and comes running. Another 1/2
of waiting until I can drive.
Quick
dinner with the girls and I am done.
Another mental check in my mind no more going out where loud noises take place.
Back to the neurologist he received the report from the
doctor he sent me to and says well we've ruled out everything but Stiff Person
Syndrome. The GAD65 came back and it's
normal. I lost it, I was crying so hard
I'm sure everyone in the building could hear me cry. He looks at me and says Heather what I mean
is your case is not typical and I need to send you to another doctor , I
believe you. He was sure it was cramp
fasciulation which is why he put me on 1st
a dose of gabapentin (which did not help) then carbmazepene (used to treat Cramp Fasculation) and it did not help
either, that rules it out (by then my dosage was very high). You also showed me one of your spasms (my
husband finally caught one I had and recorded it) and with explaining the above
incidents , I have no choice but to recommend you to another doctor, someone who has a better background and specializes
in rarer muscle disorders than myself.
And another 3 month wait to see a yet again another doctor.
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