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.
TIAs v. Seizures
July 13, 2008
In June 2005 after a hospitalization for episodes, from which I never fully recovered, of slurred speech, incoordination, vertigo, trouble walking, loss of sensation, etc. See previous posts. I followed up with the attending neurologist I saw in the hospital. After my MRI showed a small white spot and Dr. Headupmyarse (a complement really) decided that the MRI was normal, really. He scheduled me for a TEE (tran-esophageal echo) to rule out TIAs (Transient Ischemic Attacks or mini-strokes). He also scheduled me for a vascular ultrasound to look for stenosis in the carotid artery, assuring me that both tests would be normal. See, even after an EEG showed no seizure activity whatsoever-I mean nil, none, zero, NO ACTIVITY-Dr. Headupmyarse felt I was experiencing seizures.
Within a few days I arrived at the cardiac suite of my local hospital for my tests. Luckily, I was scheduled for back to back tests. First was the vascular ultrasound. This is exactly what it sounds like. They gooped up my neck and with their magic ultrasound wand began imaging my carotid arteries on either side of my neck. This was easy as pie. About thirty minutes or so later I was back in the waiting room. I had twenty or so minutes to fill while waiting for the TEE.
The waiting room housed about twenty chairs of which eighteen were filled. I sat next to an elderly gentleman. No sooner did my butt hit the seat and he began telling me all about his wife. She was in the exam room right then and he was worried. This guy looked about 80 years old. I was pretty worried about my test; I did not want to have TIAs. Listening to this gentleman speak so lovingly about his wife, seeing the worry on his face and in his eyes really kept my mind off me. He obviously needed to speak to someone and I was glad to be that person.
The time flew by and my name was called by the nurse. Wishing the man and his wife well, I took a deep breath and followed the nurse into the exam room. The room was furnished with a hospital bed, a wall of cabients, and a machine upon which sat a monitor. I changed as the nurse explained the procedure. In my hand the nurse put in an IV into which she would administer a sedative, the doc would spray my throat with an anesthetic to numb it. Finally, the doc positions a flexible tube with a transducer on the end into my esophagus. The transducer is positioned in the esophagus just behind the heart. The TEE looks for any defect in the heart or strokes as a result of blood clots.
Guess what!? Both tests were normal. Yeehaw! Dr. Headupmyarse decided it was seizures, so I got Depakote. Now we, me and hubby, felt somewhat uncomforable with the diagnosis. Now you’re thinking if the ultrasound and TEE were normal ruling out stenosis and TIAs then why didn’t a normal EEG rule out seizures. We had the same question. Dr. Headupmyarse had an answer. Sometimes seizure activity does not show up on an EEG, espcially a sleep deprived EEG in which the patient does not fall asleep. That’s me.
We were told by the EEG tech that sometimes docs like to do another EEG or possible a three, five, or seven day EEG to be sure about seizures. But not Dr. Headupmyarse. Oh no, he was so sure that additional EEGs were unnecessary and would delay treatment. There was the rub. We could insist (and my hubby did try to insist) on additional EEGs, but did we really want to delay treatment. He told us that if the brain continues to have seizures for too long then seizures would become permanent. That was the key. He said you needed to be medicated now or face permanent seizures. Pretty scary stuff. Now we know pretty incorrect stuff as well. Dr. Headupmyarse just wanted me medicated, nice quick and easy. Collect his pay without much work. Once you’re on Depakote you can’t just stop it. Nice. So now Dr. Headupmyarse would get quick easy RECURRING payments. Sweet racket he ran. At that point I just wanted it to be something correctable, fixable, a return to normal even though deep down I knew and hubby knew that wasn’t the case.
I was going to be different for him. I was never a by the book person. In fact, most of the time I abhor “by the book”.
CellCept
July 12, 2008
Currently, I am migrating from Cytoxan-chemo-to CellCept. Yes, cellcept is usually used for transplant patients, but it is an immunosuppressant; therefore, helpful in multiple sclerosis. I am taking cellcept as maintenance therapy following my course of chemo.
Usually you start at 250mg (one pill) and after months, yes months this is not an exaggeration, you end at 2000mg. This means eight, EIGHT,8 pills a day. Of course, that is in addition to the multitude of other symptom meds you already take.
But it works. Yep, thats right it works. For how long, I don’t know but I’ll take it. And I’m happy to have something that works. Even though it means even more blood work. After all the Cytoxan infusions, mere blood work is a joy to undergo.
I am only on the first pill. I increased to two pills a day, but my white blood cells plummeted so I had to drop back to one pill a day. Looks like this could take awhile.
Having ms, atypical ms, primary progress ms is like waltzing or a good polish polka. You take a few steps forward, spin, a few backwards but never end up where you begin. If it is done right it is fun. Not that ms is fun, but life is really what you make it. There are no guarantees. You happiness is all about being in the moment, moment by moment. With that in mind, no matter where you are, or what you are going through, life can be good.
Atypical Multiple Sclerosis 