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.
Hopeless
July 16, 2008
In March 2006, a year after symptoms reared their ugly heads, I was still no closer to a diagnosis let alone a neurologist willing to work with me. The last neurologist dangled the carrot then when it wasn’t in the best financial interest if the rather large and well-known clinic in my area she dropped me like a WWE wrestler, flat on the mat with a metal chair.
Still the symptoms worsened. My two sisters diagnosed with MS, were being treated and doing pretty well. My slide downward was more like an avalanche. My pcp, who was pretty certain I had MS, suggested one more doc. He was located at a major hospital in a large northeast city about an hour and a half away from me. I hesitantly agreed. So far each neurologist I saw seemed worse than the last. Maybe this wasn’t neurological, but my pcp insisted it was, he was unable to make a diagnosis though, considering he was a general practitioner, internal medicine.
Six weeks later, now late April 2006, we made the journey to see this doctor. He has got to help us, we thought. He works for this great hospital. We even know people who had worked there and gave great reviews of the institution. This was it, I could feel it.
Stumbling into the office I could barely fill out the paperwork, my vertigo was off the hook. My cement laden legs just making it to the office. Hubby all the while by my side, probably more worried than I. I knew something major was wrong; after a year I began to accept it, he hadn’t yet.
This time we only waited a few moments. The doctor actually retrieved us from the waiting room himself. WOW! I felt the slightest twinge of hope like the tiniest bud pushing through the newly thawed earth in spring.
This man, spent about fifteen minutes with me. He couldn’t even pull off the pictures of my MRIs on the CD that I gave him. He spent about ten minutes of that time asking me questions about my childhood. My hubby asked him if he was a neurologist, thinking my pcp made an appointment with the wrong doctor.
This man didn’t even read the information my pcp sent. His diagnosis was “an unknown disease of pyschological origin”. WHAT??!!?? I sat stunned, unable to talk, utter a word, move. Hubby asked what that meant. According to this man who apparently earned a doctoral degree somewhere it meant I was making up all of this. Clearly this disease was all in my head cleverly devised by me to get out of work, to drop out of family life because I was unhappy. WHAT??!!!??!! He pulled out that new bud just pushing through the thawed earth in spring. Pulled it out roots and all tossing it into metal trash can to die.
My hubby tried to argue with him. I got up, dragged my cement legs to the exam room door and told my hubby we were leaving. Another few steps and I turned myself around. I had ENOUGH! I told that man exactly what I thought of him. I could not and still cannot bring myself to think of that man as a doctor. He did not help in any way, he was uncaring, pompous, rude and had no medical basis for his diagnosis.
Then I walked out. My hubby stood looking at this man for a second. The man said he was doing his best. Hubby told him, if that is his best then he needed to change professions. Hubby then escorted me out of the office, down the hall, in the elevator to the lobby, into the garage to our car. Only then did I breathe, but said nothing the entire ride home.
I am not sure if I spoke when I got home. What was I going to do? It seems the medical profession is great as long as they can diagnose you in the first visit. If they can’t then the problem must be psychological or non-existent. What was I going to do?
Everyone-hubby, friends, mom, brothers, sisters-reassured me over and over again to keep trying doctors. They gave me the will, hope to live. Looking into my son’s eyes, seeing his face everyday kept me going. Without these people I am not sure where I would be right now. They put me upon their backs and carried me forward. The act of people reaching out to people is so powerful it permanently changes lives. This is the biggest lesson I have learned my entire life. A single act of kindness, of simply putting someone else before yourself, is the miracle of life.
Seizures v. Complicated Migraines
July 15, 2008
In June 2005, I was under the care of Dr. Headupmyarse. After my MRI showed only one white spot, my TEE was normal the doc decided I was having seizures even though my EEG was normal. Depakote was the drug of choice. To say I do not like Depakote is a huge understatement. Depakote turned me in to a zombie. A zombie that still had all the symptoms I started with: incoordination, vertigo, trouble walking, loss of sensation, severe tiredness, etc. The incoordination, loss of sensation and trouble walking affected mostly my right side with some left side involvement.
After several months on Depakote without any change, Dr. Headupmyarse decided to do another MRI. This time he felt that I did sound like a case of primary progressive multiple sclerosis. So this time I had a brain and c-spine MRI. By now you can guess the results-except for a small white spot, normal.
Dr. Headupmyarse decided instead of seizures as Depakote should keep them under control, I must have complicated or ocular or basilar migraines. Weening off Depakote and onto Topamax (liked even less than Depakote) took about six more weeks. By this time it is October and we are getting upset with this neurologist. He seemed close his eyes, open the big book of neurology, and stab at a disease with his index finger. Some type of migraine du jour.
I went from feeling like a zombie to a deep dark place on Topamax. And no, I was not any better off. My symptoms kept progressing and we were now worried. Dr. Headupmyarse certainly lived up to this name.
All the while, my pcp kept thinking I had multiple sclerosis. Finally, during the first week of December I suffered pain and extreme stiff in my right leg. My pcp reexamined me, and again thought it looked like MS. So, I asked if he could recommend another neurlogist. He did and I had an appointment in mid-January.
I went to a well respected clinic in an adjoining state. It took about an hour drive, but at this point hubby and I would drive a day if needed. Armed with my pcp’s notes, Dr. Headupmyarse’s notes, and MRIs I met Dr. Corporation. She spent about an hour and a half with us. She took my entire story asked many questions then reviewed my notes and MRIs.
Her recommendation was do a seven day EEG to rule out seizures, migraines, etc. Also have brain, c-spine, t-spine and lumbar MRIs. Add to that about 50 different blood tests. “In cases like this, it sometimes takes months before we can nail down a diagnosis, but we’ll get there.” Those were her exact words. HOPE. She gave us hope. So, why do I call her Dr. Corporation. Keep reading, you’ll see.
For the next six weeks I went through tests and waited for early March 2006. I knew Dr. Corporation would help me, help us. She seemed so kind. By this time, my right leg was stiff like a cement pillar, my left leg was only slightly better. I kept dragging my toes as I made my way. My legs felt as heavy as cement pillars as well. I would say “as I walked” but by this time on one could really call it walking. Severe vertigo made it impossible for me to drive. Sometimes all I could do was sit on my couch. My hands were losing sensation like my legs and incoordination had spread to the hands as well. I still felt very, very tired.
On the drive to my follow-up appointment with Dr. Corporation hubby and I spoke about the real possibility that I had multiple sclerosis like my two sisters. One sister was already diagnosed with MS when I started with my issues. She was on Copaxone and doing pretty well. My other sister went to her pcp and told him about some cognitive issues she was having along with her history over the past seven years of repeatedly being down with “unknown viruses” for a couple of months a time before recovering. After blood work and brain MRI, she was diagnosed with relapsing remitting multiple sclerosis like my other sister.
Hubby reminded my that although my pcp thinks MS, I was very different than my sisters. They had distinct relapses then recovery. I continually slid downwards with worsening of symptoms a few new ones. I knew Dr. Corporation would help; she seemed like she cared, wanted to help, knew how to help.
In Dr. Corporation’s empty waiting room we sat for almost an hour before being quickly (quick was not easy for me) ushered into an exam room. Dr. Corporation opened the door and without even closing the door she told me my tests were all negative. There was nothing else she could do. THAT WAS IT! FIVE SECONDS AT BEST! Then she turned to leave.
“Wait!” hubby pleaded. She slowly returned to the room. I wanted to know if I could get off Topamax if my EEG was normal. I could. There must be something wrong with me, look at me. You said you could help, may take awhile. “I was wrong.” That was her response.
I have since found out that this “well respected clinic” had a great track record treating MS patients because they accept or treat only those patients that can be successfully treated. She was just following Corporate Policy hence Dr. Corporation.
Hopeless. That is all I felt. Hopeless.
Atypical Multiple Sclerosis 