Hi Susie,
No I haven't had a LP yet.
My neuro said she didn't want to do such an invasive test yet. As all the tests have been clear so far, i think she's just seeing what the next MRI shows.
She said after my 3rd exam she didn't think I showed any 'suspicious' neuro signs, even though my symptoms are 'suggestive of MS'.
I asked her directly can she rule out MS and she said yes!
But yet she still saying have another brain/c-spine MRI in November (6 months after the 1st one) to see what's going on, as 'the lesions can take a while to form'......
I'm confused.
I don't think they like to suggest you 'might' have a disease/condition unless they're really sure.

My heart goes out to you. I've taken care of patients in the hosp. with neurological disorders like yours. I'm not saying MS because you have not been diagnosed with it thus far. I do hope you get an appointment soon at Mayo Clinic in Rochester. I had been on a waiting list for about a month and my appt is in Nov, IF my insurance will cover it. If not, we cannot afford it. It is a little hard to pray at times when you're going through so much, but I'll pray for you. I've been praying on my rosary for so many people lately, it's about worn out!! Take Care!!!! Cheri

Hi and Welcome.
It took me three years to get Dx'd with MS and that was after I had symptoms the doctor could see on his exam. Of course they didn't have MRI's back then, but I had a VEP and a LP and many other tests for a week in the hospital..

I did not have classic symptoms, but presented with odd ones and weird tremors. Years before that I had symptoms that were sensory, things the doctor could not see, but I could feel, like buzzing in the body, shocks, swallowing problems, etc.

It was harder to rule in or rule out any disease in the stone age. But in 1981, still very young, IMO, I was dx's MS. They seem to think I had it since I was 16 years old.

It is sometimes a long process (years) and others get a DX in days. It is a "wait and see" disease.

You really don't want to get the wrong DX so as hard as it is to wait, it is for the best. We were all in Limbo at one time or other. I wish you both good luck in finding out what is wrong.

We all need to know what is causing all our crummy symptoms. We know we don't imagine them, they are real.

And yes it is scary at times.

Yes, I think your neuro wants to be very certain of the diagnosis before making any pronouncement. I think she is wise to suggest a follow-up MRI in November. I've have read that for some patients the lesions take a very long time to become visible on an MRI.

I wish you the best!

Susie

The only real requirement for a RRMS dx is "dissemination in time and space", so that means two neurological events, occurring in two separate neurological areas, separated by a 30 day break. They can assess this with either neurological exams (clinical testing) and/or a combination of clinical AND MRI/LP/VEP results.

In your case, it seems you have had at least one event, so they went looking for the evidence by way of VEP and MRI ... to no avail at this point. Given the number of eye events you've had, I would think the VEP would show if there is Optic Nerve damage by now. Did you end up seeing a neuro opthamologist for testing for optic nerve pallor?

BTW, they do not need to use dye in a MRI, to see what would be evident without dye too ... The dye would just more easily identify those lesions that are "inflammed", but you didn't have any lesions at this point anyway.

So, you are on "watch and wait", or in limbo for MS, at least until something else happens. A LP might show O-bands, which are not unique and/or will be necessarily visible (just like the MRI lesions), but it could be another piece to the puzzle if you do have them. This is an invasive procedure though, so you want to consider that. I have heard of a handful of people who've gotten the dx with LP results alone, but those people will normally struggle for YEARS before that happens.

MS doesn't always show up in our testing right away, but most of us do not have to wait very long before it does. I did a poll on another forum, and for those who were watched and tested appropriately along the way, and who did not have compounding health issues (like HIV, polio, etc.), the MS almost always becomes apparent within 6 months to a year.

You are obviously getting worse, so have they offered any suggestions on what this might be, besides MS?

Cherie

gosh susie, you've gotten great advice.
i wonder what the neuro exam was? was it normal or abnormal and in what way? what did the neuro tell you?

i think seeing an MS opthamologist is a good idea.
fortunately (or unfortunately) i was dx'd in 2 mos. + mri and lp.

stay on top of this with your docs. close follow up is a good idea.
sooner or later something will show up.

i'm sorry this is happening to you.
not being able to perform your job is very stressful.
what about a 2nd or 3rd neuro opinion? with an MS specialist.

Have you tried a spinal MRI? I probably would have gotten a quicker diagnosis if I'd gotten a spinal MRI sooner. If you're having trouble walking, you may have spinal leisions.

I really appreciate your responses.
To answer some of your questions.
I have had a spinal MRI. It was pretty much normal except for some degenerative changes and Tarlov cysts.
My last neuro exam showed irregularities in my stretch reflexes: patellar is hyper; Achilles is hypo.
I do have an appointment to see a neuroophthalmologist at the end of September.
I'm still waiting for the VEP results.
I'm fighting the blurred vision thing today.
Got to make this short.

Susie