A collection of questions

[Poppy7402]

I was reviewed by the Neuro yesterday and am really no further ahead with the diagnosis process.  I was feeling pretty down about it as one would expect but after sleeping much of today am starting to feel a bit more objective about it all.

So, can anyone make any suggestions as to why I would end up with blurry vision in my right eye when I overheat and an MRI says there is no evidence of optic neuritis?  The blurring is such that if I look at a picture on the wall about 10 ft away, all I can see is the dark frame not the four pictures in the frame.

My spine MRI was negative for lesions but I have the most horrible bladder frequency at the moment and no UTI.  My ribs have also been pretty horrible.  I've just found out it was done on a 1.5T machine and looking at the pictures, the slices are uneven and there are about four segments the thoracic spine that look like they're shadowed by bone so you can't see them clearly.  Above and below are visible but not this bit.  (I presume my spine must have a bit of a kink in it).  With it done on a 1.5T machine, is it really possible to completely miss lesions that might be seen on a better machine or one with better software?  (Ours is really ancient and still runs with Windows XP).

I'm just so over all of this and feel like the rest of my life will be spent treating symptoms, without a diagnosis.

Poppy

[Joiedecour]

My ON was dx'd with visual fields, eye exam and history. So relatively easily and inexpensively. But I do have to get extra head mri as follow-up, making that 3 on head in just over a year.

[HVAC]

I spent $10,000 out of pocket in 2007-2009 for my diagnosis. I had insurance. It is expensive.

Alex

[CheyTag]

I have ON and only a VEP caught it.. My optometrist said "your eyes look fine"... Then I told my neuro I had an abnormal VEP.. He sent me to neuro-opthamologist for OCT test, visual field test, eye exam AND ANOTHER VEP... PLUS I had to have a new MRI (even though just had brain in April) of my ORBITS this time. (Neuro-opthamologist was NOT happy with quality of previous one... Awaiting appt on June 30th for possible DX... But she already told me she will be referring me to Lahey Clinic MS specialty...

[PeninaD]

My daughter had ON, but it was not caught on the MRIs, nor by multiple MDs visualizing her eye...it was first caught by a very savvy Professor of Opthomology's assistant and then with a strange camera that the same professor had written the software for.  So, not always noticeable.

[Poppy7402]

Thank you for very kind comments.  I won't give up pursuing an answer but for now I'll wait until something else happens as we've already spent thousands and got nowhere.  I've resigned myself to thinking I might be one of those people who either have lesions in the grey matter or just hasn't developed new lesions in a hurry.  I read somewhere on here that someone took three years before they found a new one.  Failing that I have something obscure that's not MS.

My brain MRI was just an regular head MRI so maybe not the best MRI.

Reading the post Quix has on here about the mechanics of bladder function I'm wondering whether my issue might originate in the brain instead of the spine.  As soon as I stand up I feel like I need to go again so it's probably more that causing the frequency rather than something further down.

Thank goodness we have an exciting holiday to look forward to.  As soon as it's booked I'll be counting the weeks !!

Poppy

[Joiedecour]

Poppy I think lesions on optic nerves are difficult to image. There are mris taken just of optic nerves - was yours one of those or a regular head mri?
Sending you hugs.

[kwarendorf]

Alex is right. Don't accept no answer as an answer. If your current docs can't figure it out, find some who can. The only way you can guarantee a life of treating symptoms without a DX is to stop looking.

All of the MRI associated with my DX were done on a 1.5T machine. The images showed brain, c and t-spine lesions. It may be more difficult to find spinal lesions on a 1.5T, relative to a 3.0T, but they will show up.

Kyle

[HVAC]

I know its is frustrating. Chances are you will get a diagnosis. I almost walked away when I was sent to a Neuro Othalmologist and she did not find any sign of ON. She said you do not have ON but you will be diagnosed with MS you can't just stop going. A year later I was diagnosed. I have always had 1.5 MRI and my spinal ones have always been inconclusive.

Scream, yell, get mad but don't give up.

Alex