Final result from London

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Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 5/2/2008 1:57 PM (GMT -6)   
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. :-)
Ann Ireland

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

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/2/2008 2:36 PM (GMT -6)   

Hi Ann,

   It sounds like you got a full work over and finally gettting closer to the answers you need. Hang in there and keep us updated. You are in my thoughts and prayers.


Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/3/2008 8:29 AM (GMT -6)   
I am so sorry that the neuro was not thorough. I also wish you had been able to get the other assessments you wanted. I wonder what else the rheumy is waiting for to dx lupus. I wish you much luck figuring out how to decipher all of this and get the treatment you need.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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