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Ann Ireland
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Date Joined Apr 2006
Total Posts : 511
   Posted 5/10/2008 7:27 AM (GMT -6)   
No one has responded to my chronic muscle myopathy with any great 'gravitas', but my twin's neuro thinks I should have a bigger biopsy.
All my primary doc said was 'ah well, that means nothing' and the neuro in London, in the hospital who didnt notice my muscle wasting just passed it off with "oh with all the meds you have been on, the steroids etc, you can expect it and the autoimmune stuff etc'.
I really wonder do the docs actually understand mobility difficulties, and sickness or do they see the half dying and the healthy and forget the various grades in the middle.
I feel as if I am half dying and yet all the doctors are so blaze.
devil devil devil smurf
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 Sep 2005
Total Posts : 2573
   Posted 5/10/2008 7:09 PM (GMT -6)   
I would see if you could make your sister's neuro yours and let him/her handle the muscular stuff since that seems to be the doctor who is showing interest in discovering what is actually wrong. I have to say most doctors miss a lot unless they see you regularly and even then they miss stuff with suprising frequency.
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,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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