Learning to Live with MS
August 25, 2008
Okay, so back to 2006. It was autumn 2006, a good year and a half had gone by before I was diagnosed with multiple sclerosis, primary progressive multiple sclerosis. Well, considering that there is no definitive test that diagnoses Multiple Sclerosis, my docs said that even though I look like primary progressive multiple sclerosis they would keep looking for definitive answers. Mainly because I was atypical. Atypical chronic progressive multiple sclerosis that looked just like ppms.
For me, it didn’t matter whether it was ppms, atypical ms, or anything else. At that time it seemed like we were all splitting hairs. I was spiraling downward out of control. Just throw me a life preserver. And they did via five day solu-medrol treatments every three months or so. I had three courses of these treatments.
Solu-medrol was great. I got such a rush from these five day treatments. It lasted for about 8-10 weeks before I noticed a backslide. Only the backslides felt more like avalanches. My symptoms reared their heads like a herd of angry lions waiting to pounce on an intruder. I didn’t just take a step backward, or even a giant step backward. I plummeted like snow during an avalanche.
So the docs would set me up with another solu-medrol round. I kinda felt like an addict. I would get this rush of energy, improvement of all my symptoms then the heavy crash. I even had the track marks considering solu-medrol was dispensed intravenously.
During the last dose, the docs informed me that they couldn’t continue to treat me with the steroids like this. Solu-medrol was a temporary fix until they could get another option approved by my insurance.
Another option, another longer lasting option. Hmmmmm. What could this be? Well, I knew already. The docs mentioned it before. CHEMO. Cytoxan. I needed a year of treatment without any sustainable results before insurance covered the expense of cytoxan.
I really am lucky to have these docs. They were able to keep me going for a year so that the insurance would cover the treatment. It seems modern medicine is really a chess game. A bureaucratic machine that plays with the lives of the sick and ill. Well its not only their lives but all of the people who surround the ill. This makes me angry everytime I think about it. I realize I can’t be helpful if I’m angry. So I need to focus on things I can do, things in my control. Anger is not really a helpful emotion.
In that year 2006 to 2007 I had to learn how to live with ms, how to live with my family while I have ms. This was not an easy task. I was battling my own demons, my thoughts about how I used to be and how I still wanted so desperately to be the person I once was. Each step along the way I seemed to have lost a bit more of me. My physical body was deteriorating while the meds were degrading my mental body.
And the biggest adjustment was that each and every day was different. I went to sleep one way and woke up not knowing how I would be that day. Stress, weather, progression of the disease worked against me. I think that this is the hardest part of ms. Don’t get me wrong, the severe spasticity, vertigo, fatigue, etc of ms is difficult to deal with. But you can deal with those issues once you stop fighting the expectations of what your life should be, should have been. All the ‘what ifs’ and ‘should’ves’ will kill you in the end.
The trick is learning to live with atypical chronic progressive multiple sclerosis that looks and acts just like primary progressive multiple sclerosis. I had to come to the realization that this is the way it is, this is my life as it is, face reality then embrace reality. No, I don’t mean be happy or glad or rejoice because I have ms. I mean realize that there still are many more good things in this world than not.
My husband stands by side, going through this disease with me. He sees me as the person he has always known. Not any less of a person. In fact he sees me as stronger and better than before ms. I get to watch my son grow up. WOW! If it stopped at just those two things that would be a life worth living, but the list goes on. I am able to appreciate and experience so much of this world that I can’t imagine not being where I am right now.
Ok, yes right now is not so bad with cytoxan behind me and a baclofen pump implanted inside me. But I couldn’t imagine being where I was six months ago, in the throes of chemo barely able to walk from my car to the infusion center and back again. Vomiting all the way home from the infusion center, and for days afterwards. It is the chance to be a better person, to help someone else out, to be. That’s the trick to learning to live with multiple sclerosis.
Recovery from Surgery
August 12, 2008
Well, it’s been two weeks since my surgery to implant my baclofen pump. The surgery itself went great. I am healing nicely and the pump is working great. I am still not fully weaned from the oral baclofen, but making good progress.
Apparently, my body does not like either anesthesia or percocet. That was the one hitch during the recovery in the hospital. So, on Monday July 28 I was trying to recover from surgery while getting sick. Oh yeah, one more thing. Because implanting the pump is one HUGE lumbar puncture, you must lay flat for the first 24 hours. I knew this going into the surgery but didn’t count of being sick from the meds. The next day they switched me from percocet to vicoden. Much better! Sigh of relief!
The nurse, which I had the prior day, even said “I bet you second guessed your decision yesterday.” That was and understatement. But, I did keep reminding myself that having a baclofen pump is a process. First you must heal from the surgery while transitioning from oral to liquid baclofen and going through physical and occupational therapies.
The big question of course is did it work? Does it work? Yes! For me, the pump is working. I am walking with only a cane now. I packed away the forearm crutches and leg braces. There are still some nagging stiffness, but as I said I am still transitioning.
I guess one of the hardest parts of this whole process for me, and it is really why I didn’t initially jump at the idea of a pump, is the idea of having this device in my body. It is like a mental game I play. Do I want to live the rest of my life (41 years old now) with this artificial device in my body? Yes, it definitely helps me walk, reduces pain level, and most importantly I can the relief in my son’s and my husband’s faces. So I logically and intellectually tell myself this is the best.
After all the chemo and now the pump I feel better than I did three years ago when I first walked into my current neurologists office. The catch is with atypical multiple sclerosis that acts just like primary progressive multiple sclerosis I can’t help but think I am on borrowed time. Really when you look at life there are no guarantees of health or longevity so in a way we are all on borrowed time. Makes me want to make a difference in this world, even more than I did before. I feel a pulling toward helping people because through all of this I have learned that we are all suffering in some way whether it is outwardly visible or inwardly destructive. All of this, the past three years, I have met people that have no health issues that are miserable, unhappy or people who seem to have it all yet they are nasty or not quite right. We all suffer somewhere.
Back to the pump. On the afternoon of July 29 I was transported to a rehab hospital where they should have adjusted the pump and given me PT and OT. I somehow slipped through the cracks and no doctor made any adjustments. In fact, I never saw a doc there despite my constant asking and badgering. So on Friday August 1 hubby (who was by side the entire week, even sleeping the first night in the hospital because I was so sick) and I left the rehab hospital. Filed a complaint and walked (Yes, I walked) out of that hospital and into my neuro-rehab doc’s office where she explained the entire pump, precautions, expectations, and made the first adjustment.
Both the neuro-rehab doc and the surgeon went over the pump before the surgery. I was well aware of what I was getting into before I jumped. I know since we (hubby and I) made the decision to undergo implantation of the baclofen pump I have heard other people say they were not prepared for or expected too much from the pump. Again, I think this is what is wrong in the medical field. Too many docs and others see us as patients (things like a chair,the manilla file folders that keep our medical history) and not people. I have learned to ask any and all questions, to research as much as I can. And most of all I feel very lucky and happy to have the doctors I have. Nothing can replace trust and caring when it comes your health.
Now we’re getting somewhere
July 23, 2008
I finally found some neurologists, multiple sclerosis specialists, who were willing to work with me. Help me, we-hubby,me,son,family-figure out what was wrong with me and help by treating symptoms initially.
Already on baclofen for spasticity which was helping a little, my third visit was a jackpot of sorts. Dr. Kindhearted and Dr. Caring suggested Provigil for fatigue. I used to be one of those early risers who felt the day was half over by 8 AM. Rising at 5 AM and after a few cups of coffee I tore into my chores. By 8 AM chores over, I began my day. As a homemaker initially in my marriage, then as a homemaker and college student. I went back to school to become a secondary school English teacher.
After graduating Summa Cum Laude, I set up an internship with a local high school. With several teachers retiring, I was already assured a job. It was that spring of ’05 that I set up the internship and by summer ’05 pretty much incapacitated. Besides spasticity, fatigue set in by 5:30am rendering me unable to really do anything. The summer heat also rendered me immobile, only I really didn’t even know the heat had anything to do with it. I had to give up the internship and subsequent job. Disappointment doesn’t even begin to describe my feeling.
Back to September 2006, one by one the docs were attacking my symptoms. First was the spasticity in my legs, second was the fatigue with Provigil. I knew how much Provigil helped because my sister was already on it. She was just like me, a little energizer bunny until MS hit her. Needless to say I was excited about the prospect of having more energy. Maybe I could make it past 7pm before I passed out.
But, wait, there’s more. Dr. Kindhearted and Dr. Caring diagnosed me with Multiple Sclerosis. Most likely Primary Progressive Multiple Sclerosis considering the lack of any the symptoms remitting. WOW! An actual diagnosis! Although it came with a caveat. BIG SURPRISE, huh!?!
Dr. Caring explained that the McDonald Criteria, the official criteria for diagnosing MS, is somewhat arbitrary. He explained that a committee of neurologists convened and decided on the “official” requirements upon which to diagnose multiple sclerosis. All the while knowing that they can never be 100% sure they were dealing with MS. Dr. Caring has been an MS specialist for twenty-five years and knew the toll arbitrary parameters took on patients and their families. HE was not about to let HIS patients go through that turmoil. Why is this important, well because I did not fit neatly into the arbitrary criteria. So even though it seems like PPMS, I was to carry an atypical Multiple Sclerosis tag. Hey, they can call it, me whatever they liked as long as I was being treated.
But, Wait it gets better. I have baclofen, provigil, a diagnosis and now STEROIDS. Solu-medrol to be exact. Wow! A diagnosis, symptom meds (baclofen and provigil) and Solu-medrol. A five day course of steroids. And a follow-up appointment in three months.
Solu-medrol should give me a boost. Maybe even help with the devastating vertigo I was feeling. The docs were tackling my symptoms, taking it slowly, giving me hope. They were also acutely aware of my aggressively fast downward spiral. They kept increasing the baclofen as the spasticity was unrelenting, the vertigo was constant, bladder and bowel issues continued, fatigue, incoordination kept worsening.
Getting approval from my insurance company took about two weeks then the plan was enacted. Ok, I would go to the infusion center at the hospital for the first dose of Solu-medrol the follow-up with a visiting nurse for the remaining four doses. The hospital dose took about three hours because they hold you for about an hour afterwards to monitor your reaction.
That night a representative from a third party coordinator would drop off the four add’l doses of solu-medrol and the paraphernalia. Things like IV pole, syringes, heparin, alcohol swabs, etc.
The next morning the visiting nurse showed up explained how I was to administer the solu-medrol to myself. HOLD ON! No one told me I was going to administer the meds to myself. What are they thinking? I’m not a nurse. What if a large air bubble passes through the IV tube? What if I don’t regulate the drip just right and it only takes me an hour not two hours? What if????
Well, the visiting nurse, Phyllis, took me step by step through the entire process. It’s ok if it takes only an hour instead of two. Some patients prefer that. If air bubbles accumulate in IV tubes, call the office immediately. The phones are open 24/7, even though I was taking the steroids in the AM. She really alleviated any fears, made me believe in myself, took the extra time. She would even be back in two days to change the needle and take blood.
On day five Phyllis came back a last time to extract the IV needle, bandage me and wish me luck. I felt kind of silly, though, because all it took was pulling out the needle, putting pressure with a gauze pad so the bleeding stopped and then applying a band-aid.
I was good to go. Let the effects begin. Keep in mind that for the first week or so your body is so wired that sleeping is difficult. Being around people can be difficult because you are so wired that every little thing can get under your skin. This first course was a learning lesson for me, my hubby, and son. But we managed.
Real Diagnosis
July 21, 2008
In June 2006 after an unsuccessful year of pursuing some treatment with three different neurologists, I hit the jackpot with Sis’s neurologists (one fellow and one Multiple Sclerosis specialist). From June until early August I went through MRIs, blood tests for a whole lot of different diseases, and lumbar puncture.
When these test results came back to Dr. Kindhearted (my primary neurologist) and Dr. Caring (the MS specialist), Dr. Kindhearted called informing of these results. Unfortunately, they all came back normal. Now I say unfortunately only because this delayed diagnosis; and I thought they would stop treating me. I had only just begun the baclofen but I felt some improvement in my legs.
I followed up in August 2006 and was sure Dr. Kindhearted and Dr. Caring were going to say, “Well since all the tests are normal except for that small white spot on your MRI which we are pretty sure isn’t causing all your symptoms there is nothing more we can do.” But they didn’t. In fact, Dr. Caring said the normal test results just makes their job harder, but that is ok because they like a challenge. He also said that even normal test results are helpful to them because it points them in different directions or helps eliminate other diseases. Multiple Sclerosis is really a disease of elimination: other diseases must be ruled out to rule in MS. We were still on track, they were still digging.
They increased my baclofen again at this visit in the beginning of August. They put me through the litany of neurological tests in the office. They then conferred and returned to the exam room. Apparently, my eyes were getting worse. The abnormal eye movements were more pronounced, incoordination worsened in both hands and legs. The spasticity worsened, worsened from mid-June to early August. That was disheartening to hear. Although I knew my eyes were not right. It felt as if I was losing coordination of my eyes, like my eye muscles were weak and didn’t seem to do what I wanted them to do.
In addition to increasing the baclofen, they did genetic testing for CADASIL. As you may know my two sisters were already diagnosed with RRMS. MS is one of the differential diseases when diagnosing CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy). WOW, what is that?
Well according to the Genetics Home Reference (Click for the long story) website it is an inherited condition that causes strokes and other impairments. That’s they short story.
I was sent home with the appointment for the end of September still in tact. It was then that I would get the results from the genetic testing. Yikes! Although the docs didn’t seem to think that it was CADASIL, but due diligence must be followed. Ok, I guess I can deal with that, I mean after all these docs were traveling down roads of which I am sure the buffoons I had previously seen never even heard about.
Hubby and I went home relieved. We survived a second appointment and these docs and Dr. Kindhearted and Dr. Caring were still busy searching for answers.
Atypical Multiple Sclerosis 