Trying to get a diagnosis for whatever it is I have.

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Date Joined Apr 2009
Total Posts : 2
   Posted 4/20/2009 10:15 AM (GMT -6)   
I had kept well until 2005, apart from a niggling pain in my right hip that was put down to fibroids. I am 54 and have 4 children. There is no family history of MS.
In 2005 I attended my GP with upper right abdominal pain. He diagnosed Gall Bladder problem - but the hospital disagreed. I was directed to a neurologist by a GP who suspected I had MS, as the pain in my rigth side affected my right side movement. The neurologist reported a clear MRI scan (although I have since discovered I had some "normal" lessions. He also did a spinal tap that was clear. Sludge was diagnosed in my Gall Bladder and I had it removed in May 2006. I then had 18 months feeling quite well, with maybe a couple of hiccups. In November 2007 I started to feel very unwell again - exhauseted and upper right abdominal pain. I had inflammation of stomache and deudenum diagnosed in Jan 2008. I then started to feel really unwell - itching all over, complete exhaustion and problems moving my right side & leg ( no numbness or tingling, no vision or cognitive problems) I asked to be refered to neurologist again and a rheumotologist. The rheumotologist suggested something fairly low down on the immune system spectrem but no idea what and certainly nothing he could identify (having done a whole battery of tests). I had a second MRI scan down my Neurologist who was still of the opinion everything was "normal" It was at this stage I discovered I had "lessions" on both this scan and my first scan but "perfectly normal ones". I was extrememly sceptical about "normal lessions" and was refered to a second neurologist who took one look at my MRI scan and said the only thing remarkable about my MRI scan was how few lessions there were for someone my age- He would have expected 7 or 8 lessions for someone in their 50's and I only had 3. After a brief examiniation he concluded that I absolutely didn't have MS but suspected I had something wrong with my digestive system that was causing some sort of autoimmune response. I have since had MRI scans on my abdomen, Endoscopy, colonoscopy all of which showed nothing apart from inflammation of the stomache and deudenum. I now take Omniprazol but I still feel exhausted and when the abdominal pain gets bad I don't seem able to move my right leg properly at all. When I get these "attacks" they wash over me completely and I need to sit down right away. I can then be in pain for a couple of days but never feel well. Any ideas??

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Date Joined Jan 2007
Total Posts : 3571
   Posted 4/20/2009 6:01 PM (GMT -6)   

I am very sorry you are not feeling well and that you are not getting answers.  I am not a doctor so of course I can't diagnose you.  Your symptoms do not scream MS in my opinion.  You have a lot of digestive problems that are not typical for MS.  Also the itching is not associated with MS. 

It is true that many people have lesions.  Lesions are caused by many, many things. 

My tests were: MRI with white matter lesions (3), lumbar puncture with typical MS oligoclonal banding, failed evoked potentials (vision-abnormal, hearing-normal, lower extremeties-abnormal), abnormal reflexes and responses to a neurological exam by the neurologist, blood work that indicated no infection.

I hope that info helps.  You might try asking for an evoked potential test.  That can indicate whether or not your central nervous system is responding to signals in a typical way.  It is a painless, non-invasive test. 
Good luck and keep us posted.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

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