Posted 5/2/2008 11:57 AM (GMT -7)
Here goes, just out of the hospital.
That hospital was utter chaos!
I dont think I needed to be an inpatient and it was sealed, NO window opened and the air was so dry I thought I would go mad, that distressed me beyond measure.
No moisture whatsoever.
I have a defo on the Sjogrens, I have the rheumatoid factor and some of my bloods in Ireland show evidence of Lupus but I dont have3 it now.
My spinal colum is a feckin mess! I dont know whether any disc or anything along its path is right.
I have haemageoma, osteoartritis, breaks scoliosis,shifted vertabrae, traped nerves, you name i9t, the spine is a heap of fun.
I have not the written report on the emg, that doc was GREAT! No evidence of myopathy but evidence that my muscles are 'failing'
The neurologist was highly suspect, she said the movement disorder was drug induced from years on psychiajtric meds.
She also said it was highly likely I'd go on to get parkinsons.
She said my muscles were strong and when I brought my twin to meet her in the cafe she said this and I showed her my arm to see the muscle wasting and said 'oh, yes, I didnt see that'
So my 'mini' consultation in the cafe revealed to her something she didnt notice.
her assessment was mad fast and I couldnt ask or say much, but nor could I subtract 3 from 100 with out shaking a leg. When she told me to do it without shaking I just stared at the ceiling!!
No help with the physio assessment nor OT, nor nuitrition.
Loved the consultant rheumy.
To go on hyroguinnine or summot like that.
And sinemet which is for parki./
reumy couldnt explain the severe heat and lack of temp control nor the extreme wincing in light.
going privately to twins neuro again.
Then home to live with chihuahuas.
Are my any closer to conclusion?
Would love ALL your opinions.
Couldnt WAIT to get online.
xxxxxxAnn from London.
Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream