Multiple Sclerosis Specialists
July 20, 2008
In April 2006 I felt hopeless, the lowest point in my life. After spending a year trying to find a doctor that would help me, diagnose me, relieve some symptoms, SOMETHING, I was left adrift in a sea of incompetent, callous, unethical neurologists. My family and my primary care physician kept me floating. But when the third neurologist suggested I was psychologically impaired and that I needed a psychiatrist not a neurologist hopelessness settled in for a long winters nap.
Swearing off doctors, I called my pcp to let him know what happened. He suggested another angle, an orthopedist. He figured we would get help by going through the back door. An orthopedist would surely suggest a neurologist after performing some type of testing, further strengthening my case. What was I a defendant in a court case? NO! I am done; no more doctors. Thanks, but no thanks.
I know what you’re thinking, “What about your hubby?” “What did he do, say?” He told me we were going to pursue some avenue, find help somewhere even if he had to physically carry me there. He was not going to give up. My sisters (both of whom were already diagnosed with MS-having MRIs and Lumbar Punctures consistent with MS), my mother, my friends, my brother (one of three that kept me going) would not let me give up.
So, my sister who lives about an hour away in a nearby state suggested I see her MS specialist, a well-known and respected neurologist. Hubby said make the appointment, I’ll get her there. Sis, called and said her neurologist (a then fellow overseen by this respected MS specialist) wanted to see me. He wanted to help, wanted to work with me. Assured Sis that if he couldn’t help because it wasn’t MS, he would find someone that would and could help me. Hubby kept telling me we were going to that appointment, end of story.
Seemed like a life saver was thrown to me, but at this point I was more than skeptical. My appointment was early June 2006 at 4pm. I don’t remember the day but I remember the time, because we left his office at 7pm. Yes, the doctors took three hours to review my ‘case’. WOW!
They(the fellow and ms specialist) left no stone unturned. I mean they listened to an entire year of my life-symptoms, tests, results. They asked pointed questions for clarification. Then they examined me. I followed their fingers in front of my face, they pulled at my legs, I performed finger coordination tests and finally I walked. But not very far. Immediately they saw problems. Actually they saw problems when I first walked into the exam room, but the second time confirmed what they saw and what their examinations found.
The result: some medication for my symptoms. Initially I was put on Baclofen for spasticity. Spasticity was causing the stiffness in my legs and the pain in my legs and the spasms in my legs. WOW! Medicine that was for a real symptom. Dare I have a little hope! I was cautious. I really held back my hope.
Holding back hope was very difficult because these two doctors cared about me. Really, the way the listened, asked follow-up questions, they way the spoke to me and hubby. When one person reaches out to another out of care, concern is truly a miracle. I had already experienced that with my family and friends. I knew what it looked like, sounded like, felt like. These docs were the true thing.
After their conference, they came back into the exam room and laid out an entire treatment plan. This included the aforementioned Baclofen. Also, they would redo MRIs, massive amount of bloodwork, and a lumbar punture: FOR STARTERS! Then they made two follow-up appointments. One six weeks later after the tests and one six weeks after that to monitor my progress. Then what?
Well their response was “we keep following you, until something definite shows. Meanwhile we keep treating the symptoms.” I was their patient, now. Sometimes, they said, it can take a year or more before a diagnosis can be made. Sometimes, because there is NO DEFINITIVE test for MS, a definite diagnosis cannot ever be made. But the good news was they could be sure this was neurological, upper motor neuron disease. They could tell that right then, upon examination. All else was up for grabs. It may be MS, it may not but they could and would treat my symptoms.
Hope springs eternal.
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”.
Atypical Multiple Sclerosis 