I have come up against several medical problems and thought I would come
online and ask for some advice from others who might be in my position.
I have had Fibromyalgia and Collagen Vascular Disease for well over 25 years now.
I had surgery 4 years ago(July 3rd..2 months before 9/11) to repair an abdominal aortic aneurysm.
After surgery I started having muscle weakness so severe, I have been bed ridden since.
A year ago this last Sept (2004) after lots of medical problems, my doctor here sent me to Cleveland Clinic.
After several visits and tonz of tests..the dx was sleep apnea and mitochondrial myopathy...
musular dystrophy.
In December 2004..I became really sick...infact I remember nothing of three days before
my husband calling the paramedics. I am told we went to see christmas lights and out to
dinner 2 days before and that the day before and the day he called paramedics, he came home from work on his lunch hour
to check on me and I threw up and basically was "out of it"...I remember none of this.
The Saturday before christmas..11pm...I could not get off the toilet due to major muscle problems.
I told my husband to get my daughter to help him.
I ended up sliding to the floor. I remember my husband asking if I wanted him to call paramedics and I told
him no, I am just sick and need to sleep.
Later I was told he picked me up..put me to bed where I slept for a bit and then when i became sick again..he called paramedics.
I remember none of this and would have bet money I never moved from the bathroom floor
I went into a coma...awoke 36 hours later. During the coma...my husband was told by the doctor I had a 70%
chance I would not survive and 30% chance that if I surived I would have some form of brain damage.
I was now a diabetic level 2 with an abscess that required surgery and after I cme out of my coma I was taken to
surgery to remove the abscess. It took an entire roll of gauge to pack where the abscess was removed and after my release I had home nurses 2x a day to
remove old packing and put in new...after about 2 months they came once a day and about another 1 and 1/2 months
the abscess was too small to be packed and nurses were no longer needed.
The abscess made 3 tunnels which made packing hard because they had to pack tunnels and measure them weekly to be sure they were healing. As you can
imagine..pain was great..and happiest day of my life was when my surgeon said..no more nurses, no more packing! *s*
Continously feeling I still have an infection and afraid I will go back to hospital...I have gone to my doctor asking for antibiotic which he refuses to this
day to give me an antibiotic saying my temp is only 99.9 and needs to be higher to prove infection.
So in attempt to prove I have this infection..I ordered him to do a cbc...which did prove white count to be high as well as red count.
So I tell the doctor..see I have an infection! Well, ordering the cbc backfired...big time!
Instead of giving me an antibiotic, he called and told me I needed to see a "blood doctor immediately".
Turned out his blood doctor is a Cancer doctor who tells me he thinks I have leukemia and need a bone biopsy, blood tests,
and catscan.
I am not a stranger to tests having had tonz of blood work over the years as well as scopes, lumbar punctures, mri's, emg's to name a few.
I also worked for 3 hospitals in the E.R. in the past so I am no stranger to all this. However, being on Clevelands "list" for a year now and still waiting for a muscle
biopsy...the idea of a bone biopsy just did not set right.
So, I went onto webmd site and started reading...got soooo sick at what i was reading I had to quit without reading all of it.
My doctor is upset that I will not go ahead with it...but for now I refuse!
With all the tests done at cleveland, I do not understand why they never mentioned cancer???
My doctor says...reason for biopsy is they are afraid leukemia (still not proven) went into
bone cancer! how can this be??
How can one person have so many medical problems?
Now the stress of everything is raising my diabetic numbers ...117 tonight. If i get to 120 i have to give myself an injection...something
i have not had to do in months because i lost over 50 pounds which has helped control the numbers :(
If Anyone has any suggestions or has had a bone biopsy...I would love to hear from you!
Please...email me at...
E-MAIL ME
Thank you in advance for your help and advice
|
|
|
|
|
|
|
|
