11/30/10 Update: Finger pecking 99% of the time. No longer on any MS medication. Will start new meds in January. Balance is poor, walking poor even though my wife says I am getting better (I sure don't feel the same). I use a walking stick all the time and my arm now is feeling like it's developed Carpol Tunnel Syndrome as well (used to have in hand but was operated on and not present in hand currently). No longer get so darned tired and determined many of the prescription drugs were causing most of that. Very difficult getting around now unfortunately. My mind feels weaker, less responsive.
I am taking Tsabri since June '07. My Dr wanted to get me on it as soon as she could (after it was ok'd by the FDA) and I began my monthly infusions. Secretly, I wanted to begin with Tsabri as soon as I heard about it a couple of years ago.I could feel changes that were occuring more and more and felt the new drug could at least halt them.
I first was diagnosed in 1995. I was recovering from a really bad sinus cold and my prescription was almost out. All but one of the original symptoms went away also and when I went to my Dr for the follow-up appt I discussed the one symptom still bothering me which was numbness in the right side of my face. From my eye socket down to my lower lip the numbness was so evident I felt like I just got a novacane shot. And, this symptom existed in my since just after I first got the sinus cold/infection several weeks ago. The GP doctor that day refered me to a neuro. I waited only a few days to see one, but what a bundle of nerves I was. I went to the neuro and he ordered an MRI (first one ever) which, while I was havine one done, I dozed as it was pinging away. No kidding! A couple more days of waiting and I went to see the neuro again to hear him explain I had MS. I still didn't know a thing about MS and whenever I spoke to someone I kept mistakenly calling it Muscular Dist...Oops, I mean MS. I retrospect, I needed additional testing before a diagnosis was made. Several years later, several MRI's, a nerve conductivity test, and a few other tests convincively tell anyone I have Multiple Sclerosis. in 1995 it was diagnosed as RRMS, although I have doubts and think not. I think it is a more advanced MS.
So, I continued to lead a fairly active life, mountain biking, ocean swimming in S CA, pick up basketball which fed my 40yr old+ ego, divorced, battled through a messy court battle after the divorce was final with my ex wife, and always while I enjoyed my life with my 10 yr old daughter. I had MS but outwardly it didn't show and inwardly I didn't feel anything.
Additional MRI's kept noticing more white spots though and now there are two neuro's that have me pegged for RRMS. The last two MRIs have shown black holes (dead spots). But I felt the description of RR just didn't fit. I had the numbness, when i had a lot of stress and whenever a cold was about to hit. Otherwise I felt healthy. I married again, I led an active life, my wife started to learn about MS through me, which butchered her education of it because I didn't know very much about the disease and I didn't have a need to know. I seemed healthy.
Until about 2002-9years later. I started to feel a little differrent. I noticed that after walking for awhile I started to limp because my right leg wasn't working as well as the left. Then I noticed the foot drop. etc,etc. I really felt that the type of MS I had was not RRMS, if ever. My right side was getting weaker and weaker and the foot drop was more and more. My right eye socket felt weirder and weirder ( I still cannot explain that). I was having more and more problems in the bedroom (this site is G rated, right?). My memory just sucked, some of the time. Other times it was as sharp as ever! Sometimes I slurred and stumbled around while limp/walking kind of like a drunk. I kept showing or feeling more and more symptoms of MS.
From 1995 till 2002 I had been on betaseron, avonex and rebif. During that time I didn't believe I had even one exaserbation. My brain MRI's showed more spots and I remember one spinal MRI showed some also.
I started to feel differently and show more and more symptoms starting in 2002. But, even to this day I do not believe I had exaserbations. I believed I had several pseudo exaserbations but that is it.
My wife is very health conscious and we exercise five days a week. She practiced aerobics for several years and she got me to even do some for a couple of years before I felt I couldn't do it longer. I used to run with her but quit right after we got married. She mentions that every once in a while also but I felt I couldn't run without either tripping or just running out of steam.We did Step classes together for awhile and I had to quit but she still does it. Her answer to practically every health related obstacle is "exercise". I don't disagree but sometimes I just want to relax instead. Now days I want to relax more and more. But, I still do something at the club for an hour five days a week. Sometimes I swim, sometimes I do weights, sometimes it is just a stairclimber for 30 minutes before I hit the showers and go to work. Sometimes though, even though I am there, I just cruise through a few exercises because I just don't feel 100%. More and more times, I slink into the men's locker room almost at the same time we arrive at the club. My wife says I am paying for the most expensive shower in the world if I don't use the club for anything else!
It is obvious to me or anyone who watches me for very long that my MS has worsened. Is it RR, or PR, or another stage of MS? Looking at the graphs I think the one that describes me best is the one with the little line creeping up the chart at a 45 degree angle but I don't believe it. My neuro won't elaborate or explain other than to say my RRMS is worsening. Now, for the past 9 months I have been taking Tysabri and I still feel that my MS is worsening. I have to wait until a year of Tysabri treatment is up before I can get another MRI and I am practically counting the days. I want one done on my spine again as well as one on my brain. I already have my appointments scheduled.
I promise myself I won't snooze this time.
Mar 26, 2008
Jun 18, 2013
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