looking for suggestions, input, feedback, please

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ebteb
New Member


Date Joined Dec 2010
Total Posts : 12
   Posted 1/3/2011 8:38 PM (GMT -6)   
In retrospect, I have been having bizzare symptoms since the early-mid 1990's.  In 2007, I was diagnosed with optic neuritis.  Over the last few years, that has been "upgraded" to recurrent autoimmune optic neuritis.  In addition, I now have numerous other diagnosis such as mild brain atrophy, levido reticularis, iron deficient anemia, spastic colin, etc.  I have double vision now, period, it does not go away.  I experience severe vertigo and dizziness regularly and moderatley daily.  I have what I refer to as mini-blackouts, where all of a sudden, i can't figure out where i am or how i got there.  my speech is funky where i either talk dyslexiclly or can't complete a thought or sentence on a regular basis.
 
MS has been elimanated as a suspect.  my ANA blood work always comes back borderline which has meant negative.  my sed rates are always flagged H -- high, but am told that the figure is 'not alarming'.  meanwhile, i phsyically feel mostly aweful all day everyday. 
 
my spouse and i live in an area with the best rated hospitals in the US but i can't get the doctors to connect the dots.  all i seem to get is treatment of specific symptoms.  i have been told everything from i'm just depressed, (treat the depression), your're over 40 and need reading glasses, (optic neuritis-steroids), punch drunk syndrome, (haven't had a lick of alchol in more than 7 years).  you get the picture.
 
after several years of frustration, acceptance, new symptom, frustration, acceptance.... i spoke to my optic neurologist on 12-30-2010 to ask her, "when do coincedents (misc. sympotms) stop being coinncedental?"  i was told (yet again) that i may never have a "label" or diagnosis and that i just had to accecpt that and stop being a worry wort.  i have a difficult time accepting that there is no underlying cause to what has been taking over my body and mind and that i am overreacting to new syndromes as they arise.  i am only 48 and don't think i am overreacting to suddenly not knowing where i am, not being able to speak coherently, not being able to comprehend simple repetitive tasks....
 
i once managed a real estate portfolio worth more that $200million and negotiated more than 100 transactions a year remembering, verbatim, conversations, contract issues, deadlines.... for more than a decade.   i was a triathlete and am very sensitive to my physical abilities/innabilites.   my health continues to deteriorate and i cannot get any dots connected or answers. 
 
i stay positive through helping others and prayer but i am out of resources for finding answers for what is beating me and my body up. 
 
sorry for the lengthy story, but can anyone advise me to whom i should see?  please.  thank you so very much.
 
 

Post Edited (ebteb) : 1/4/2011 12:57:37 PM (GMT-7)


ebteb
New Member


Date Joined Dec 2010
Total Posts : 12
   Posted 1/4/2011 1:55 PM (GMT -6)   

dear possi,

thank you for responding and sharing a part of your experience, strength and hope.  my hsusband and i are in recovery and live (as best we can each day) one day at a time.  thank you for the reminder.  sometimes it gets hard to see the forrest through the trees.

it does frustrate me, though when another body function hits the dirt.  and i can go for some time without any 'incidents'.  then, when the next one hits...  the last big piece of information was the iron deficiency.  my iron sits at around 12 and my absorbtion rate is 3%.  no wonder i feel like i'm in a fog all day!  after almost 4 years they checked my iron.

regardless, the last big body change was that - no matter what i did to help it along - i could only take a poop every 6-9 days.  i've always been sporaditic, but.  rediculus, right.  so i had an endoscopy and colonoscpoy last week.  spastic colon, diverticulitis.  i've had that dx for years.  but to go from 2-3 days to 6-9 days? 

anyway, they did biopsy of my pancreas to see about the iron absorption.  i'll get results later this week.

 

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