Appt with MS Specialist(s)

[MAGrl]

I posted April 9th after I received MRI results showing possible cervical lesions in C2 – C3. When I spoke with the Dr (after she looked at the CD) she wasn’t sure they were lesions; when I saw her in person and we went over them in her office she was leaning towards lesions but wanted someone else to look at the MRI. She also saw a lesion on the brain that no one else saw.

A week later she called me and we’re back to no lesions ANYWHERE. Needless to say I was very confused.  Even though she believes I have MS based on symptoms and exam none of the testing supports it so she didn’t want to see me for a year, but offered to send me for a consult to another MS Dr and set it up for me (although she didn’t think this Dr would say anything different from her).

I was very fortunate to have been sent to an excellent MS Clinic in Boston and surprisingly got an appointment within a month. After seeing the Fellow the Dr walked in and announced that there are lesions in my neck; they have been healing but there is still some inflammation left. Both my husband and I were somewhat stunned and relieved after what we had been through.

The confirmation of lesions was huge. The Dr was pretty blunt when he told us that I don’t have MS…. Yet! He feels that so far this is a one time demyelinating event   He didn’t see any lesions in my brain and my LP was normal. So for him it is the time and space issue???

As this was a consult he asked me what “my plan” was; because we weren’t happy with come back in a year we asked him what he would suggest.  His plan is to do a brain MRI (3T) every 3 months and follow-up visits every six months. He doesn’t suggest doing spinal MRI’s as I would know if there were new lesions; at this point I would agree with that.  

I’m staying with the Boston Dr as I like his plan the best.  I didn’t dislike the other Dr; in fact she was very nice. I am very grateful for the consult.  It just shows how subjective all of this is. In the end I know my body, lesions in C2 – C3 made sense to me. From the first day of all of this my symptoms were in my legs bilaterally. Until recently I didn’t have one-sided symptoms.

In the meantime, my major complaint is muscle stiffness and pain in my legs.  I do have a RX for Zanaflex which I’ve taken but have stopped for now.  I went to PT and am trying to do daily exercises and stretching to help.

I will say that if I never read this board I wouldn’t have known about 3T MRI’s.  Thank you for that advice; I was given a choice and knew to choose the 3T. Obviously it made a big difference for me!!!  

MAGrl

[MAGrl]

Thanks for the reply. I had trouble with the zanaflex initially; it actually kept me awake instead of making me sleepy. It did help with the leg pain but I hate taking pills. I think PT is helping, time will tell.  My legs ache today but I over did this weekend.

I agree that it is strange to be relieved to have lesions but most people on this board know where that relief comes from. I think I'm on my way out of Limboland; I don't have a diagnosis yet but I do have a direction.

Terry

[Fluffysmom]

Congratulations on finding a good doctor!  Whoo hoo!

It sounds like he'll stay on top of things, and that he trusts you to know your own body and that you would recognize new symptoms that pointed towards new spinal lesions and would then order a spinal MRI.  

I had some troublesome side effects with Zanaflex, and just take 5 mg. of diazepam at bedtime for muscle spasms.

Is the PT helping?  Do the stretching and exercises help without flaring things up?  If so, way cool!  I'm so glad you posted this; we always need positive news around here!  

It is strange to call a doctor seeing evidence of disease in someone good news; but all of us in Limbo Land totally understand that it is, indeed good news.  And validating, too.

Keep us posted!

Kathy