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Trying to Write

Posted Mar 06 2010 2:37pm
At night, I can't sleep, so I lay in bed and "write" a blog post in my head. And it's usually pretty darn good if I say so myself! But then, I get up in the morning, and it is nowhere to be found within my head. So, that is my excuse for long time, no write.

Here is the jist of what has been going on. I went to the MS Center and saw the Nurse Practictioner, which I should add is who I have seen the last few times. My neurologist left last spring for bigger and better things (You may have heard of him, Dr. Mehta, who is involved in CCSVI research in Albany NY and is beginning a study there). Since he left, I have seen the NP, who is a very wonderful person. However, the last few visits have left me feeling like she wasn't hearing what I was saying. The neurologist that I have been assigned to, I have not even met because he is so overwhelmed with the number of patients that go to the center.

I went to see NP in January with complaints of pain in legs, increasing numbness, complete exhaustion, heavy arms and legs, balance issues, eyes blurry then clearing often, severe depression, and (ironic that I can't think of the word here) unable to think properly-what's that word? Starts with a C. Good grief. I give up! Anyway, in her conservative way, she wanted to "wait and see", so she gave me amantadine for the antiviral benefits, because of having the flu in December, and she sent me on my way. I called her a week later with no change in symptoms, and she decided to have me do a Prednisone taper and see if that helped. So I did as instructed, and it seemed like everything just continued on a downhill slide.

I scheduled yet another appointment with her, which is an hour drive each way, and I brought Brian along for support, and a list of the ever-growing problems. By George, she listened! She immediately sent me in for the first of a 3 day regimen of IV SoluMedrol. But the thing that I can't seem to get out of my head is something she said to me that day. "You have been slipping through the cracks long enough. It's time we figure out why things keep going the way they are going. I must be missing something, so I need you to come back with one of the nuerologists." Hmmmm. Slipping through the cracks? That really did not make me feel like I was getting the health care that I need and/or deserve. So, on March 25, I go for a head/cervical spine MRI, then go right over to the MS Center to meet with a neurologist to see what he thinks. Unfortunately, I doubt he will have the MRI results since the appointments are back to back. NP suggested I consider Tysabri, but that just scares me. I know there is negative media on just about everything out there, but I have kids to look after.

Meanwhile, I completed my round of IVSM last week, and am now on to the Prednisone taper. As much as the side effects of these steroids get to me, the beneftis outweigh them. The pain in my legs is pretty much non-existent right now. Balance is much better, except for a bit yesterday when my body decided it wanted to walk sideways. All I could do was laugh at that one. However, the numbness in my right hand and lower arm is now almost total, so I'm not sure what's up with that.

I have decided that I still have enough anger within me about this whole MS thing that I need to direct my anger in the right direction. With support for other MS'ers (you know who you are and I love you guys!!) I have started exercising, eating better, and taking my vitamins and minerals. I went to the pharmacy the other day with a list of my meds and all the supplements I want to take to check on any interactions, and all is good to go. I had a visit with my primary care doctor this past week, and he noticed that since my last visit with him on Nov 30, I have lost 7 pounds. Cool. Not a whole lot, but I have lost about 15 since last summer. I told Brian I will be the "buffest babe" on the block by this summer!!

So, overall things are good. Definitely better than they could be. So I keep trucking along.....
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