Anyway, the orthopedic doctor had an MRI done of my left knee and found that it had torn cartilage and wanted to do arthroscopy surgery on it, but before he did that, he wanted me to go to a neurologist because he knew the way I was walking was not due to the knee injury. Now keep in mind that I thought the way I was walking was because of my knee injury and it could be fixed and I would walk just fine again.
So I went to the neuro that he referred me to. He was so nice. He did blood work, an MRI of the brain and spine and a Lumbar Puncture. The blood work came back normal. The MRI had a heavy lesion load on either side of my brain and also a heavy lesion load in my spine with some severed nerves to some of the functions of my legs, and the LP showed a very high Myelin level with 9 O-bands. He put me on a DMD because at that time he didn’t know what form of the disease I had. I went on Rebif. I applied for SSDI and was approved on the first try with no hassles at all.
He also referred me to an MS Specialist who is one of the best in this area. Okay, here is the eight month timeline starting from when I was diagnosed:
I was diagnosed October 25, 2004. I started using a cane that day at my neuro’s suggestion. (I was 39 at the time.) Four months later after my 40th birthday, I needed a four-wheel walker because of too many falls with the cane (I was reluctant at first, but after a few bad bumps to the noggin, some sense was knocked into me) and four months after the walker, I needed a power wheel chair because I was falling with the walker too.
The power wheel chair was an easier transition for me than the walker was. In September 2005, my doctors and I decided to stop the Rebif. They also decided it was PPMS with the Rare Aggressive form on top of it. Only 1% of the entire MS Population in the world has the rare aggressive form.
I have had many people tell me they know someone who has the rare aggressive form. I am skeptical of that because of what I stated earlier, plus if there are that many with that form of the disease in my state then I think researchers need to be alerted to that and converge on my state.
I think more than likely these people were told by their treating doctor that their MS is very aggressive and they confused that with the rare aggressive form, which is totally different than MS Being aggressive. It is also the only form of the disease that is often, but not always, fatal – something I have to live with in my thoughts every single day of my life.
People on MSWorld one time were trying to come up with a slogan for me. One woman came up with Climbing One Mountain at a Time. I loved it. I have had a lot of trials and tribulations throughout the past 3½ years. Well, as of March 2008 it is 3½ years. And I am certainly not always even close to happy-go-lucky for a good portion of the time, nor do I have what most people define as a positive attitude.
What I do have though is a Survival Attitude, and so yes, I am climbing one mountain at a time. I couldn’t manage it all at once, but one at a time, although it is slow going. I do eventually manage to get over that mountain and on to the next. That’s really what life’s all about anyway.
I don’t lie, so I won’t tell you that I don’t feel sorry for myself time and again, because I do, and who could blame me? But I eventually shake myself out of that mode because it is not good to stay in a self-absorbed pity party for too long.
Now I am wheel chair bound. I have a C.N.A. who comes over daily to help wash me up and get me ready for the day. I go to Adult Day Care (there are all elderly people in the one I go to.) I go three days a week. The other two days the C.N.A. stays with me all day because I can’t be left home alone safely for a full day while my husband works, nor can I cook for myself. Now who at 43 years old wouldn’t feel depressed by all that and then some, now and again?
