Not really in limbo, but definitely new

[Katery]

Hi! I'm not really in limbo-to keep it as brief as I can:

I went to a neuro doc that I worked for a few years back to finally do something about my back-the intermittent pain wasn't really what was bothering me, it was the weakness that seems to have been getting worse over the last couple of years.

She ordered brain and lumbar MRIs, which showed multiple old brain lesions and one active lesion. Surprise! I have MS!
Anyway, I did the solumedrol infusions and then an lp, bloodwork, an EMG, and MRIs on brain, c-, and t-spine with and without contrast (whew) in the past 2 weeks.

And here I am. I have 3 kids-my youngest is 1...I'm scared for what this means for them. My mom may or may not have had MS (that's a long story), and the thought of passing something like this on to my kids is just awful.

If I'm being honest, I've had symptoms for years-I dismissed most of them as back problems and maybe blood sugar or whatever (I had an eating disorder for many years). And I learned to ignore and compensate for stuff....

On Wednesday, I go back to the doc to get the results of all the fun tests I've had so far. I knw she'll push for Tysabri, but I might just end up ging for a second opinion....
I'm glad to have found these boards!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[22cyclist]

Katery: Welcome to MS World. I am sorry for the reason. We will see what happens with your scans. It is possible that you have something else. However, it is still possible that you still have MS. Either way, we will be here for you. It is a scary thought to have something with little kids. I wish you the best at your next appointment with your neuro. Please keep us informed.

We are here for you.

Take care
Lisa
Moderation Team

[Katery]

Thank you!

[justacowgirl]

Katery; people on this board can help and inspire you. Your life can be full even with ms!!

It is hard to contemplate passing this disease onto a child but we really don't know that we do that. That is what I like about this board. Since there are no definite answers at least we can see how others deal with similar problems.

J

[Katery]

Thank you, J!

Went to neuro this morning - it's MS.

Cervical MRIs showed lesions, brain MRIs showed lesions, O-bands in the CSF from spinal tap,
the...uhm...blood test...IVG? IVV? IGG? something was positive - the rest of the bloodwork was negative for all the fun stuff (Lyme, Rheumatoid, Sarcoidosis, etc)

...also very low vitamin D levels (and the B-12 was crazy low, too..). Probably RRMS, hard to tell since it's a new dx, time will tell, etc.

Started Vitamin B shots (once a week) and the office is doing all the paperwork for Rebif.

So that's it.

[Katery]

LOL Me again!

I'm wondering about the vitamin B-12 deficiency (along with the spinal lesions) in regard to the MS dx...could I have misdiagnosed with MS, with the possibility of the B-12 deficiency being responsible for everything (even the lesions)? Could the numbness, weakness, fatigue, and mental fog be a vitamin deficiency only?

And if that's the case, will the Rebif do more harm than good?

And if it's a B-12 problem only, will the vitamin shots clear everything up (as in, will I get all better and back to baseline)?

Does MS cause a B-12 deficiency? Or does the deficiency contribute to MS?

Any thoughts would be most appreciated....

[Kat4life]

If you have really low B12, then it could be the cause of everything. You may have pernicious anemia, and my understanding is that there is more likelihood of that being genetically passed on than MS so perhaps that's what your mother had.

Only you can make the decisions under the guidance of trusted doctors, but there would seem to certainly be enough reason to question the low B12 being the cause of your troubles and possibly treating it and doing a wait and see on the DMD for MS

Low vitamin D can cause some problems too.

There are some studies that show people with MS have a higher rate of low D and B12, but there is the possibility that people are being over diagnosed with MS as well.

If you doctor isn't open to the possibility of it just being B12 related ( I mean that's the exact reason they check for low B12, because it can be a MS mimic) then perhaps a second opinion is in order.

Good Luck. Oh and when you get your B12 levels back to normal there is good reason to hope that some (all) of the damage will reverse, and if it is indeed the B12 at least no more should occur.