Another one waiting.

[simplymama]

Hi everybody,
I'm trying to figure out what to think. I am in my mid-forties and a mom to a large family. After the birth of my last, 4 years ago, I started having headaches. Over the summer they got out of control, lasting for days or weeks and being accompanied by vertigo, nausea and this buzzing sensation in my limbs.

I have since had an MRI that shows white lesions and a spinal that shows 2 o-bands. The first doctor who I didn't care for felt pretty certain that I have MS, the second doctor who I saw when he filled in one day because the first was called away on an emergency before one of my appointments said that 2 o-bands is not really a positive and that the lesions on the MRI could be caused by the severe headaches I've been dealing with.

I have some very minor balance issues, like occasionally I will stumble a tiny bit sideways when walking but will always catch myself. Or if I try to put on my shoes while standing sometimes I'll lose my balance, again never to the point of falling.

I have this all over body vibrating/buzzing that is extremely annoying. It can be everywhere at one time or just in one limb. It's terrible after exercise. I sometimes wake up with my arms/hands numb.

I have some very minimal right sided weakness that the first doctor picked up on in my exam.

I also have little twinges that happen in my head. Hard to explain and sometimes if they happen in the right spot they tend to make me get dizzy just for a second.

I was suffering from pretty bad fatigue over the summer, but it seems to be improving a bit now that the headaches are finally under control. I still find I need to rest by the afternoon, but it's not anywhere near as bad as it was.

The only other important thing I can thing of right now that could be important is that I had a few months after the birth of one of my children 19 years ago with some weird neuro symptoms similar to above that had my family doctor sending me to a neuro, but by the time the appt. rolled around (it was a couple of month wait at the time) they had gone away so I cancelled.

I'm worried, but trying not to obsess because I know whatever will be will be. The second neuro told me to give it until February and see if the symptoms go away or diminish more then come back and see him (my request to switch to him) and we can talk.

I'm fine with that, as I'm not at the point of wanting drugs for this, but I guess I just wondered if people really can have 2 o-bands and not have MS. I know what the medical sites say, but I just really wonder if MS is in my future.

[22cyclist]

Sorry you are having such a hard time. You may want to look up the McDonald Criteria. The standard is 4 o-bands in the CSF with none in the corresponding serum.

Good luck
Lisa

[simplymama]

Thanks. I had read that the standard for positive is now 4 o-bands. According to the first neuro I saw, it used to be 2 and he said it is still very unusual to have any and he said the placement of the lesions on the MRI were very typical for MS.

Then the second doctor said what you said that the criteria is now 4 and that while the lesions could be from MS, severe headaches can cause lesions as well.

I guess I just have to wait and see what develops. Just wondered if others only had 2 bands and ended up eventually diagnosed. I think it is more my experience from 19 years ago that really got my mind worrying a bit. That and the numbness tingling and occasional dizziness that just won't go away despite the headaches being under control now.

Anyways thanks for answering. I guess I'll just have to wait and see over the next while what happens.

[JerryD]

I think you are having a tough time with getting a firm diagnosis. You really need to see a neurologist that treats MS, routinely. You may need to consult 2 or 3 neurologists. Don't be afraid to ask questions, even if you are on the phone making an appointment for service.
I would get my PCP to do blood tests for vitamin D and vitamin B-12 levels. You may be surprised at what you find.
There are many other tests that you need to confirm a dx of MS. I hope you do not have the this disease. Good luck

[simplymama]

Oh thanks Jerry. They did a lot of blood work for thyroid, Lyme, ANA to help diagnose autoimmune things like Lupus, Vitamin D, other tests for inflammation etc. I actually do have borderline low B-12 and take a sublingual supplement because both my mom and her brother have pernicious anemia.

I think the neuro was fairly thorough in testing for the standard things.

I'm just really interested in the o-bands and how often people really do have a couple and never develop MS. It's hard to get info on that but I'm hoping to learn that it is fairly common.

[22cyclist]

Simplymama: What did the IMPRESSION portion of the MRI report say about the white matter lesions?