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Posted 2/16/2009 5:57 AM (GMT 0)
Hey there,

Hope you are all well.  Have not dropped off the face of the earth although feels as though I may have been :)

Doc is 95% certain at this point I have ms.  This is going on and on and in the meantime I get worse and worse.  Symptoms change constantly and the newest one frightens me half to death.  Blurred vision.  I also have issues for example cannot stir a pot and stand up will feel woozy and sick.  My night vision is very poor can see out of one eye ok the other is almost blind in dim light.  I was driving with my sun glasses and took them on and off and  kept looking at them puzzled as I had issue with the right eye it was too dark and my vision was distrubed.  I missed the red color plate which I now know is pertinent and was diagnosed with occular rosacea a while ago.  Go back to a neuro opthamologist next month a new guy but am scared.  Actually got out of bed I was so scared I would wake up blind.  any one got any ideas?  should I go to the emergency room or will they laugh me out of the door?  I have mri of spine next week and total body bone scan.  other issues continue on and off although pain and weakness and my new friend incontinence  hang around pretty much all the time.

the eye stuff freaks me out.  should I go to he ER or just wait until morning?

If any one is up let me know if not I guess I will try and calm down.  Wish I drank! dizziness would not be an issue then  I could get lost in a bacardi and coke!

Hugs,

Carolyn

Posted 2/16/2009 1:07 PM (GMT 0)
Gretchen are you out there? heeeeeellllllllllllllppppppppppp!

just kidding but not really! what shold I do i second evoked potential eye thing is not till next month neuro opthamologist next month. My neuro said no one else does Evoked...what he means is the only one he uses I think. If I go to a regular opthamologist will they see if there is neurological eye issues or do I have to go to a neuro opthamologist? My neuro did not tell me to go to one I decided that is who I want to go to in future as the last one did not mention the missed color board as an issue and I guess it was significant especially as we are still trying to rule out an autoimmune disease. I was the one who mentioned it to my neuo they did not send the info to him as requested OR of course they may have and my neurologists office might have not put it in my chart. really unhappy with my neurologist and do not plan to stay with him. I hope to like the neurologist opthamlogist then I can change. so what to do? go sooner to reg opthamologist?

thx. Hope you are well.
Posted 2/16/2009 4:30 PM (GMT 0)

Hey Carolyn,

I am glad to hear from you but so sad that you are still having problems and that those problems are getting worse. 

I would not go to the ER unless you wake up with significant vision loss.  For MS (and I know you don't have a dx) the rule of thumb i you only go to the ER when you can't care for yourself.  Obviously that would include unmanageable pain, vision loss, paralysis or anything else that keeps you bedbound. 

How is your lyme treatment going?  I know that that diagnosis was complicating things.  Which came first the chicken/lyme of the egg/MS.  Hehehe. 

Seriously though, I hope you are feeling better very soon.  Please let us know what is going on. I can't remember what MS tests you have had.  Please remind me of your MRIs lumbar punctures and junk............just curious. 

Posted 2/16/2009 6:19 PM (GMT 0)
Thanks Gretchen for responding. MRI last time still unchanged scattered non specific foci. Lumbar was negative IGG was top of normal. EBV reinfect and mycoplasma still a battle. Eye tests have been curious as 4 months prior dxd with occualr rosacea and missed red color plate until now was ok infact was ok few months ago. Now double vision difficulty reading on days and last night completely lost vision in right eye in the dim light and then when it came back it was so Icold see shadows not any clarity like with the left eye. balance is really off and cant forexample stir a pot or watch anything move. Neuro and Lyme doc thinks ms has kicked in and went from suspected to him feeling 95% as he put it...meantime I am deteriorating it changes weekly-daily sometimes. pain subsides then incontinence kicks in after I thought I was clear of that for a while. this week full body bone scan and mri cervical and t spine and then march evoked eye test again and probably April is brain scan time for the meingioma. Still fighting lyme antibiotics still same taking clonopin for spasms, lyrica-waste of time I think-provigil-pain meds and that is about treating symptoms rather than trying to limit flare ups. so.....battle continues
Everything I am reading seems to point for many to be a pathogen or EBV or something of that nature that can be the trigger so I assume lyme was the culprit although at this point I am just as fed up as can be with both. so hard to take care of myself and 4 kids especially the baby as there is no family so this is a trying time. My hubby is great but of course he works.
Just want to stabalize somehow as dont know how you can modify and accept things when you never know what is around the hour!
last lyme test was igenex psoitive for lyme.......
I hope you are well. Love your quote my friend :) thanks for the reply
Posted 2/16/2009 8:55 PM (GMT 0)
ok meet with neuro thurs am he might want to put me on steroids big issue with lyme...eyesight-lyme hell boy what a predicament.
Wed full body bone scan, mri spine thurs pm so maybe something will be sorted out one way or another. So scared to treat one and make the other worse. Have to pray really hard for the answers. roll on......
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