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cheesegrater

Joined: 07/30/2012
My Story:
Working on diagnosis. 57 years old, when looking back at my symptoms and all the things I went to doctors for over the years, seems like there where indications in my late 30s.

Have lesions in non-specific areas, have been to Neuros and MS specialist with no diagnosis (7 neuros all together). Have verticle diplopia (vertical double vision) which is rare, seems they are having a hard time accepting that. UCSF MS director told me he thought I didn't know how to look through my glasses.... Just for the record have had bi-focals for 7 years.

Symptoms are involuntary muscle movement eyes, face, shoulders, legs, pecs (keep them up girls!), exhaustion, shooting pains, bobbly gait, inability to connect my brain to my mouth and sometimes unable to connect my brain to anything, skin eruptions. All of the symptoms come and go as they see fit, might be pretty good one day and need to lay down the next. Vision and exhaustion are a constant. I have about 60 minutes at a time of vision use before it becomes difficult to read (impossible). Have ocular migrainse and all sorts of visual entertainments.

Frustrated, angry, worried, tired and even hopeful that I just have to find the right doctor and I will get help.

Waiting for referral to UC Davis MS specialist.....

Latest Activity

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Skin outbreaks?
small blister like eruptions on scalp, shoulders, face, neck, back. Sometimes on legs...More
Posted by cheesegrater
Reply: Ms symptoms?
Dave, you are hilarious and possibly my new best friend! An, I am not yet diagnosed,...More
Posted by cheesegrater
Reply: Seeing things
Marjang, thank you for that! I am waiting for a referral to the MS/MG Neuro at UC...More
Posted by cheesegrater
Reply: Seeing things
Unfortunately, no hippos or unicorns, darn it all! Lights sometimes, white, sometimes...More
Posted by cheesegrater
Reply: Seeing things
Dave, so, do you?
Posted by cheesegrater
Seeing things
Anyone see lights and colors that aren't there?
Posted by cheesegrater
Reply: Big Day!
Good luck! Please keep posting.
Posted by cheesegrater
Reply: Multiple Neuros
You're a genius! I will do exactly that.
Posted by cheesegrater
Multiple Neuros
Anyone gone through multiple Neuros, One an MS Specialist with UCSF, everyone's...More
Posted by cheesegrater