Category Archives: My Own MS Journey

From MS Relapse to MS Relapse

The relapse I had in the spring of 2006 was my second debilitating experience. The double vision episode the year before was my first journey into the belly of the beast that is MS. In June of 2006, after changing medical treatment and finding a caring, aggressive neurologist, I had my first steroid therapy. During this time I was experiencing bad vertigo, “buzzing” that made my whole head feel like it was vibrating, swallowing difficulties, the MS “hug” or severe tightening around my upper torso, exhaustion, and left leg weakness that made me walk like a duck. I had a bladder infection— common for MSers with bladder problems— and towards the end of the attack, facial numbness. I was a wreck.

The first steroid experience was a bit unsettling. I didn’t know what to expect. My nerves were shot to begin with, since I didn’t know how long the attack would last. The steroids made me so sleepless and miserable. I would lie awake and hope for sleep. I tried Ambien CR and Lunesta, but they lost their effectiveness after a night or two. Finally, my neurologist prescribed Klonopin, a multi-use medication. This was fantastic. It knocked me out and kept me asleep. I wish I had known about it when I first started the steroids.

I finally emerged from the 2006 attack in July. I started talking to a social worker who helped me sort out all of my emotions. This helped (and still helps) me tremendously. Many of my symptoms went into remission and I was able to cut my medication list down to two things. I took Betaseron injections for the multiple sclerosis and I believe they really helped me. From that 2006 attack until my recent 2008 attack, I had been in pretty good shape physically. I was careful not to overdo it, until the spring of 2008.

I began to work outside of the home, again at a local library. I was so happy to be out, but I did work that was way too physically demanding, and the temperature of the library was usually quite warm. This job lasted for about 4 months, until I couldn’t deny that I was having another relapse. Again I was forced to stop working. I have to say that this relapse was a little less frightening than the last time, probably because the Betaseron had “watered down” the attack. Most of my previous symptoms came back, especially the weak limbs and the exhaustion. But they were less intense. I also was armed with coping techniques that I didn’t have in 2006. All in all, the MS attack of 2008 was a little less disturbing.

I am now, again, emerging from the attack, and this time some of my symptoms have not gone away. I believe I am more tired and tingly than before, and my left leg still feels, at times, like a lead pipe. I suppose I have to renegotiate my path and tread forward, but I am better equipped today than I was 2 years ago.

A New Doctor and Steroid Treatments for MS

IV Steroids, Microsoft.comIn the spring of 2006, I was having trouble with my old MS symptoms, and new, scary ones were evolving. I was participating in a clinical trial, but I felt that the doctors were just monitoring me and not treating my multiple sclerosis. I was recently out of work, due to sickness, and very stressed as well as depressed about my future. I had filed for disability in February of 2006, since I was having trouble maintaining even part-time work. Bill was teaching at the time (his third year as an alternate route candidate.) He didn’t receive tenure, which meant he would have to start again at a new school system or change careers. Since he didn’t go the traditional teaching route and had merely “tried on” teaching for fit and compatability, he decided that he would try something else, since he didn’t love it. More stress as we were (briefly) both unemployed.

When I started to experience a weird tingling sensation when swallowing, I began to really panic. I went to visit the doctors in the clinical trial, and the director informed me that I wasn’t having swallowing issues, because that is a symptom of a more advanced case of MS. He told me to take Neurontin, a neuropathy medication, and it would stop any tingling sensations I was experiencing. I replied that I know what strange swallowing feels like and isn’t such a new symptom evidence of an acute attack? I also stated that although I was only diagnosed in 2005, I’d had symptoms of attacks since 1998.

I was disregarded by the doctors and told to just continue taking the Betaseron, after having also been disregarded about the new vertigo symptom that started in the winter of 2005 – 2006. I was at my wit’s end with getting no answers, and decided to change my plan of attack: I sought the help of a recommended MS specialist in my area.

When I visited this doctor, he finally answered my questions. Yes, the vertigo and swallowing problems were probably signs of a new attack, and yes, someone as young as myself could experience swallowing issues (depending on the areas of my MS lesions, not on how long I’d had MS.) He sent me for MRIs and started me on my first course of IV and oral steroids. An interesting experience.

Participating in a Multiple Sclerosis Clinical Trial

Google ImagesI think the spring of 2005 through the summer of 2006 was the worst year for me (and my husband) physically, emotionally, and financially. It was the first time that my MS was, for the most part, out of control. The year felt like one long, continuous relapse.

Before this time I had suffered yearly relapses (between April and July) that were annoying but not severely debilitating. I was able to work part-time and we figured this would be the plan of action, since we knew I probably had MS, and part-time employment I could handle. Ultrasound, which I was trained in and with which I made the best income, seemed more and more like an inappropriate career choice, even part-time, because it involved little sitting or possible breaks in the schedule (contrary to movies and TV, ultrasound techs often scan on their feet to get the exams moving along and keep the pace. Pregnancies aren’t even leisurely exams.)

I began volunteering the year before at a local library, helping to reshelve the books. I did this for about 2 hours a day, 2 days a week. I was a paid shelver for about a month, then hired as a part-time library assistant with some evening and Saturday hours. The schedule was good for me at the time, and I really found an environment that worked for me. So when April of 2005 came around, almost a year after starting there, I was floored when I developed double vision. This clinched my MS diagnosis, and it started my involvement in a medication clinical study. It also began my struggles with working outside of the home.

In May of 2005 I started the study, and was given Betaseron, an MS disease-modifying drug. The study was basically comparing Copaxone, another medication, to Betaseron (regular dose), and Betaseron (double dose.) The theory was that, if tolerable, a double dose of Betaseron would be twice as effective as a regular dose of Betaseron or Copaxone. I knew I was on Betaseron, but I didn’t know which dose I was taking. Side effects for Betaseron include flu-like symptoms such as fever, chills, headaches, nausea, and body aches. I had all of these symptoms as I began taking the drug. Taking Tylenol or Motrin really didn’t help, and I was doing the injections every other day. Somehow, during all of this transition and while suffering from left-sided double vision, I was able to have my family cart me to work and back. Surprisingly this first month was not when I missed the most work.

The summer came and the double vision very slowly resolved itself. I found a way to turn to my left and not glance out of the corner of my left eye. This relapse did not fatigue me, so I went to work and did the best I could, and disclosed my diagnosis. Everyone was very supportive, and I learned that one of my immediate coworkers also had MS, although a milder version.

The clinical trial involved lots of blood work and constant evaluations. My balance and walking were always checked. Meanwhile, over the summer, I started to really feel lousy from the side-effects of the Betaseron and new emerging symptoms. I was developing a tightening around my torso that felt like a really strict corset. Sometimes it took my breath away. The doctors just recorded the information. Towards the end of the summer, the library director, one of the best supervisors I’ve ever had, gave me unpaid leave to try to rest up and feel better. I took about a month off, but I was still having problems with pain/burning/tightening in my ribcage area. Even sitting down would trigger pains. I was running to the bathroom a lot, because food was going right through me. My old symptoms were starting to rage as well. The doctors at the clinical trial just kept recording everything.

In the winter of 2005 – 2006, I was back at the library, with a slightly reduced schedule. One day I felt quite dizzy. This was new. I had never experienced vertigo before. It was horrible. When I went back to my doctors and told them this, they said it couldn’t be a new relapse. Maybe it had to do with migraine auras (from which I didn’t suffer.) All this was recorded by the doctors, but they didn’t treat the vertigo or do MRIs to see if I was having a new attack. Meanwhile, I was so sick from the dizziness and a new fatigue, I again missed a lot of work. In February, my boss had to let me go due to excessive absences due to MS. She wrote me a letter of explanation for the future, citing my inability to work my scheduled hours and not my performance (which was “excellent”) as reasons for termination. This would become evidence for my future disability case.

I became depressed that I couldn’t work. It was the first time the MS had really stopped me from keeping even a part-time work schedule. It is the worst feeling to want to do something, but having your health prevent it. I was also missing a lot of family functions and outings with friends. I was getting frustrated with the clinical trial too, because I felt that the doctors were minimizing my problems. It was as though they didn’t want to admit I was having a new relapse because it would mess up what they were trying to prove in their study.

Things were about to become worse before they got better. As spring 2006 arrived, my old symptoms raged, the dizziness lingered, and a couple of new symptoms evolved. Time for a change as I found my current, awesome neurologist (through word-of-mouth) and learned that indeed, I was experiencing a full-blown relapse. Proper treatment with steroids would follow. At the same time, my husband was undergoing a major career change, which threw us into even more financial instability. Another new, uncertain frontier.

“This Has to Be Multiple Sclerosis!”

Double Vision, Google ImagesI’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.

The MS Specialists Who Couldn’t Diagnose Me

Microsoft.comBetween 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….

Getting Proper Medical Attention for an MS Attack

The Brain, Morguefile.comIn 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…….

An MS Attack on the Same Leg

In the year 2000, I suffered a definite new attack in the summer as I was finishing ultrasound school and starting my clinical experience. My left leg again became tingly, somewhat numb, and weak, but this time it extended from my toes all the way up to my hip. At times I felt like I had a lead leg! This went on intermittently for about a month, and I didn’t reveal this information to anyone but my close family members, who also thought it had to do with having had Lyme disease. I had no specific primary doctor at the time, since I believed myself to be relatively well, and my mind went back to the last general practitioner I saw who did no further investigation after the negative EMG (nerve) test. I went on with my ultrasound clinical experience as my left leg eventually returned to “normal.”

Another Strange Attack

Back to 1999. So I went for a year without any problems after the numb lower back incident. I was working as a physical rehab aide while going to school for diagnostic ultrasound. The rehab field is fun and it’s meaningful because you can see people progress and get better. On the flip side, it can be very physically demanding and the shortage of healthcare workers, particularly nurses, is not helping the situation. So I was running around by day, physically wearing myself down, then going to classes at night, 4 times a week. The ultrasound program was one that was quick and intense, to get technologists out and working after a year of training and then a short clinical experience.

I have noticed a pattern for myself in that I tend to relapse sometime between April and July. Might be the onset of the warm weather. So as the heat was rising in June of that year, my left leg began to feel weak and tingly, from foot to knee. The leg also felt cold, like I had bad circulation. I plugged on, but I went to my dad’s primary doctor, who sent me for an EMG, a test that supposedly checks for nerve conduction. The exam was a bit uncomfortable, because it involved levels of electrical shocks and multiple needles stuck into my leg. When the results came back, they were negative. The primary doctor never scheduled me for anything else, and I again chalked it up to some weird side-effect from having had Lyme disease. The leg weakness/numbness went away in a month’s time.

At that point I wasn’t my biggest health advocate because I didn’t know any better.

The First MS Attack

Today I vividly remember my first MS attack, although at the time I didn’t think much about it. It seemed pretty subtle. It was a little over ten years ago, and I was living outside of the Philadelphia area, in my mid-twenties, and trying to figure out what Google Imagessort of career I wanted. Being an English major can be a blessing and a curse because it keeps your options open, but it doesn’t give you very specific career skills, unless you become a journalist or some other type of writer. So at the moment I was investigating health/human service ideas, because I enjoy helping people.

I was living in a studio apartment and I remember waking up one morning and feeling like I had slept funny on my lower back. One small area on my left side was tingling with pins and needles like it was still asleep. About the size of my palm. Except this area didn’t “wake up” and it continued to feel like this for about a week.

Now I didn’t have good health insurance at the time, and about a year earlier I had contracted Lyme disease because I was working outdoors in a region that has a population of deer ticks only second to that of Lyme, Connecticut (where Lyme disease is thought to have begun.) I had been quickly treated with a strong course of antibiotics, and I believed I had made a full recovery. But in the back of my mind, when this pins and needles event happened in my lower back, I began to tell myself that it could have been a minor side-effect from having had Lyme disease, because this infection can cause tingling and numbness as well. So I chalked the whole tingling episode up as a small inconvenience. Plus the whole thing went away within a week like it never even happened. No harm.

At this point I knew absolutely nothing about multiple sclerosis.

Welcome

As a person living with multiple sclerosis for about 10 years, I still find it frustrating and sometimes isolating trying to explain it to my loved ones. The symptoms can be so bizarre and people often can’t tell My Path, StockXchng.comwhen they’re happening to me. I’m sure you’ve heard from others that “you still look okay.” That’s the irony! Living with this hidden disability can make you feel like you’re buzzing, tingling, going weak, and having vision problems, and yet the outside world cannot see this. Not everyone with MS is using a cane or a wheelchair. And yet there are times when maybe a cane would help with the tiredness, but how do you explain this to someone? Multiple sclerosis is so unpredictable and living with it involves a constant renegotiation of your life path.

My name is Jen, I’m 37 years old, and I’m currently in the middle of a relapse. I’m a freelance writer who worked in the health and human service fields for over a decade, particularly as a registered ultrasound technologist. I have an English degree and I enjoy children’s fiction and adult nonfiction, biographies, and mysteries. I volunteer at my local library, and I plan to continue taking library science classes online, if only to make me a better library patron and to provide me with optimal sources for my writings. I am a member of the National Multiple Sclerosis Society, and have volunteered at their walking and bicycling fundraising events.

Welcome to my MS story. I also welcome you to tell your story.

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