So here I am

I went through a very short period where I believed I was getting better. I went through several weeks believing I had MS and trying to adjust. Then something occurred to me.

How could I be having these symptoms for 12 years - and it be MS - and have NO LESIONS? Sure, you can diagnose MS without lesions, but aren't you supposed to keep looking for them? I've had MRI of my brain, C-Spine, and T-Spine - no lesions.

Oddly enough, I do have chiari malformation, but it is not serious and likely not the cause of most of my symptoms.

The pain has been fairly constant for several years - burning down both legs and in my feet, especially if I do anything too active (like gardening). Pain in my fingers, including this deep burn that I swear is THE worst pain I've ever felt (and I did give birth twice) when I hit my fingers against something just the right way. Pain across my shoulders, back, and in my chest from tight muscles, also my legs and feet cramp.

In July, I began walking circles to the right. I'll get up and begin to walk (hobble) and end up going in about two circles to the right before I realize I'm walking in a circle - then I try to stop myself from walking in a circle. Hopefully, before I hit 10 circles, hubby will have come by and stopped me. It takes a serious concerted effort and an arm, or my cane, to walk straight.

Ah, the cane. At my last neuro appt, my husband says to the neurologist on his way out the door - wouldn't physical therapy maybe be helpful. Neuro wrote a script and a few weeks later, physical therapy. My therapist stated I need to keep the cane with me - balance is a real issue - and may need a wheelchair from time to time. I don't have a wheelchair, or a house suited to using one.

Back in May, I had some difficulty talking - speech was slow and chunky. That seemed to clear up. In August, this problem came back - much worse. Only this time, it's not just slow speaking - it feels like some entirely different language. I can run on for several minutes before I realize what I'm saying is absolute nonsense to me and every one else in the room - except the dogs - somehow they still understand me.

Several calls throughout July and August to make an appointment with my neuro got the same result - his schedule is locked and we can't make appointments - try in two or three weeks.

It probably isn't hard to imagine my frustration. In late July, I went down to the MS Center at Hopkins in Baltimore. I really like the neurologist there. He seems to think I don't have MS, but Sjogren's syndrome. I asked should I be taking this immunomodulator - Copaxone - if I don't have MS? He said sure, keep taking it ? (BTW, Copaxone costs about $4,300 per month, it is given by injection, and shown to reduce relapse of Relapsing Remitting MS by 30% - it also causes a lot of pain, and skin problems and possible necrosis)

So, I have been through blood tests, MRI, eye tests, and Monday I go for a lip biopsy to see if I have Sjogren's disease. I don't see the neuro at Hopkins again until November.

I saw my family doctor last week. She completed the paperwork that's been sent to my neuro for the last three months that he never sent back. Thank goodness my measly disability check will keep coming, and I can keep our health coverage a little longer. She said I need to find another neuro - yea, ya think? I asked the neuro at Hopkins, but understandably, he can't take my care if he doesn't diagnose me with MS. So, I guess I am on a search for a local neuro.