MS Strength

I’ve just finished my pulled pork sandwich, an unexpected offering and leftover from our 4th of July gathering. Gulped some water and I am now ready to plunge into the meat (no pun) of my MS diagnosis story:

So from 1998-2005, my multiple sclerosis was a big mystery which eventually became dubbed “probable MS.” I had oligoclonal bands present in both of my spinal taps, I was positive for no other similar conditions or diseases, I had more than two nerve scars apparent on my MRIs (“multiple sclerosis”), and I had various telltale symptoms of the disease: intermittent weakness/numbness in my left leg and my right hand and forearm, “trick” bladder and bowel systems, muscle spasms in my left leg, some developing numbness and tingling in my torso, and balance issues with my left leg (I sometimes crashed into stuff on my left side.)

Shortly after we purchased our first home (spring of 2005), I was making a right turn out of our new neighborhood to get onto the main road. I glanced to my left and saw double. Not terrible, nauseating double vision, but just a slight doubling of everything towards my left-hand side. I rubbed my eyes because it was spring allergy time and I thought maybe I had a “misty” left eye. Not so.

I just remember going home and telling my husband about it, and I said aloud, “This has something to do with MS. It has to. It’s another freaky symptom.” I was very nervous and I called my parents first and told them what was going on. Then I called my primary neurologist’s office and at first they said I couldn’t get an appointment for 2 weeks. I lost it and yelled,” I have double $%&*!?# vision! Would you wait 2 weeks to see your doctor?!” So they got me in the next day.

My neurologist concurred that this was likely from multiple sclerosis. He again sent me for MRIs and had me schedule with an eye doctor. He also sent me to the emergency room to make sure the problem wasn’t something “acute”, which is code for a stroke or a brain tumor. I would have a CT scan, which is good at detecting such problems, but an MRI is more sensitive to the fine workings of the brain and spinal cord nerves and the scarring that happens during an MS attack.

On the way to the ER, Bill and I stopped to get some pizza because we knew how long an average ER visit lasted. The day was particularly hot, and I remember that my vision got so bad it completely doubled so that just looking straight ahead caused double vision, and only looking to the right stopped the problem. It is the understatement of the year to say that I was scared.

So my CT scan of course came back negative, and my MRIs showed a new, active lesion on my brain stem. I next headed to my mom’s eye doctor. He tested me, but could detect no immediate problems, but he admitted that he was a generalist. So he sent me to a specialist: a neuro-opthamologist. This is where I finally heard the words,” You definitely have multiple sclerosis.” This woman could see the damage to my 6th nerve going to my left eye (termed 6th nerve palsy.) She said this happens pretty much only to MS patients and diabetics. I definitely was not diabetic.

At this point my general neurologist sent me back to one of the specialists I had already seen. His team concurred with the MS diagnosis and asked if I would like to be in a clinical trial for two different MS medications. I would get more care and be closely monitored over a 2 year period. Sounded good to my mother and me.

I was not given any steroids at this point and had to wait out the double vision for its duration: 7 weeks. At this time I did not know that I could have had the steroid therapy and shortened the attack. I followed what the MS specialists said and started the study, taking Betaseron injections every other day. My best comments about this study are that I have taken Betaseron for 3 years, it works well for me, and it has probably contributed to a recent 2 year period of being relapse-free. My worst comments will come forth as more of the story unfolds.

Between the years of 2001-2004, I was poked, prodded, MRI’ed every 6 months, spinal tapped another time (to make sure no Lyme disease bacteria were still present in my spinal fluid), drawn blood from so many times I can’t even count (!), and seen by two MS specialists and one rheumatologist. My husband and I actually liked the rheumatologist the best and almost hoped that the problem stemmed from his area of expertise. Seriously, the MS specialists were okay, but not at all definitive. They kept saying “probable multiple sclerosis”, but would not commit to the disease, since I had only a few lesions/scars on my spinal cord nerves. It was everyone’s theory to “wait and see” what would happen next (a scary prospect from the MS patient’s perspective.)

In the meantime, I was having very bad headaches that came out of nowhere (I was never one to suffer from them unless I was sick with the flu or such.) They seemed to start and then escalate when I was out in the sun. Authorities on MS will say that headaches have nothing to do with the disease, but I have read so many message board posts that indicate the opposite. On more than one occasion Bill took me to the ER, just to get a strong painkiller for a headache that wouldn’t go away. Demerol, given as a shot in the butt, worked great. Incidentally, the headaches tapered off and never returned after about a year, much like some of my other MS symptoms. Go figure….

Another odd thing I developed was something like restless leg syndrome. It happened the first time after coming back from a family trip to the Outer Banks (2004.) Bill and I were sitting on the couch and my left leg just jerked out, like I had just had a reflex test. Of course it was late spring again, my time for relapses. This left leg spasticity would usually happen at night, before bedtime, and then in bed as I was falling asleep, or trying to. Very annoying. It continued on and off for the next year, then disappeared for a while.

During this period of time, I also gradually noticed that I had to go to the bathroom more frequently. Not because I was drinking or eating more, but because I felt more of an urgency. Sometimes I felt like I would burst (particularly my bladder) if I didn’t get to a bathroom. Then I would go and be surprised that I didn’t have a full bladder, just the urgency like I did. Strange. I later learned that these bladder and bowel issues are some of the most common MS symptoms, especially for someone who has damage along the spinal cord nerves. But still no definite diagnosis from the “specialists.” My general neurologist followed their lead.

In 2004 I had to stop working as an ultrasound tech. I tried per diem at two other places, but I could not keep up with the work load and found myself shooting my mouth off about the ridiculous pace. True, the demands were ridiculous and I can find at least 5 or 6 techs that will back me up on this, but to be fair, it is the nature of the job, and it was time for me to say goodbye. This is when I turned to the library, and I started volunteering.

Getting a definite MS diagnosis would finally happen in 2005, after an undeniably “MS-induced” attack. It led to participation in a clinical trial for Betaseron v. Copaxone, 2 multiple sclerosis medications. But real help and understanding by a true MS specialist (my current, dear doctor) would not happen until a bit later….

In the summer of 2001, I was working full-time as an ultrasound technologist. I was also doing a “stat” call at a physical rehab hospital afterhours, to check seniors for blood clots in their legs (one of the side-effects of being laid-up with a new hip or knee replacement.)

The work was very tiring, even for people without multiple sclerosis. A lot of the techs would vent in the break area about how patients were always getting “squeezed” in. I absolutely hated that too, and found myself liking the health field more in theory than in practice. Patients were constantly being sent over “stat” because the business was new and of course, the doctors/owners wanted the money! About 25% of the cases that were added on needed immediate attention. I was so weary leaving there sometimes, and then every third week I might have to bolt over to the rehab hospital to do those cases. The money was very good, but for me, it was not worth my energy, which was dwindling fast.

In July of that summer I had another attack, this time affecting my right hand. It felt tingly, numb, and weak, just like my left leg had been the summer before. I had trouble combing my hair, brushing my teeth, and writing. I could barely freaking write! The left leg problems came back at the same time.

Now that I was working in a medical office, I told one of the techs and one of the radiologists. The tech said maybe I had a pinched nerve from scanning the patients. The radiologist immediately said, “Maybe you have multiple sclerosis.” She wanted to do an MRI pronto, but I promised I would get to a neurologist.

And I did. And he, being a general neurologist, wanted to do every test under the sun to figure out what was going on. I told him about the Lyme disease and treatment, so that made the situation a bit confusing. Basically he sent me for bloodwork to check for chronic Lyme disease, lupus, thyroid problems (yes, they can cause tingling in the limbs), blood sugar levels, and other things. The bloodwork came back negative for everything he checked for.

Next came the MRIs. Brain and C-spine (the top part of the spinal cord that attaches to the brain.) These came back with several (not a ton) of “lesions or scars” along the spinal cord indicative of multiple sclerosis. So it seemed a positive case for MS, given the symptoms and the MRIs, but to be more certain, the neurologist sent me for a lumbar puncture, or spinal tap. Yuck. But the hospital staff was kind and I have to say that in my experience, the most compassionate nurses have been male. Anyway, this blog entry is becoming a book, so…..the spinal tap came back positive for oligoclonal bands, something that is present in up to 90% of MS patients’ spinal fluid, but uncommon in anyone else’s. Strike three.

So this neurologist told me I had “probable MS”, and said the next step was to send me to an MS specialist. That is another story…….