Good and Bad

February 2, 2011

So I have been feeling pretty good lately.  I’m not running any races, well I’m not running.  I have enough daily energy to do what needs to get done.  Essentially, I operate on a low level.  That  is good.  I am happy with that.  I can make a little life for myself.

The bad. Well, I’ve never been satisfied with slowing down or following rules.  Most of the time this rebellious spirit serves me well.  But, when it comes to conserving my energy and keeping my energy at a good level the rebel in me is not serving me well.

Rebellious Spirit, Spirit of the Soul, does help with overcoming the depression, the “woe is me” feeling that a chronic illness brings. The spirit enables you to live happily, find a way to make your life, see the joy in life despite or maybe even because of your troubles.

When this disease, when atypical ms progresses again I will be facing another round of chemo, cytoxan.  If you have read any this blog you know that I have a love hate relationship with cytoxan.  Chemo really helped me, but I was sick; sick through the process.  I want to keep myself as good, as healthy as I can.

The rebel me needs to ssllooww down if that is going to happen.  In analyzing why I don’t slow down, I’ve come up the answer.  I think.  I want to live life, experience all life has to offer.  I don’t want to follow the speed limit and park between the lines when I die.  I want drive 100 mph taking the backroads finally careening into a skid as I stop at the Pearly Gates jumping out of my convertible  tossing St. Peter my keys.  You get the idea.

The spirit is willing but the body isn’t able.  So I hope my spirit finds creative ways to live life without punishing my atypical ms ridden body.

We’ll see how it goes.

the beginning

May 3, 2010

I thought I would revisit the beginning of this whole MS. I know I’ve written about it before but I often hear people discussing the problem of getting diagnosed with MS or finding a doc that will actually treat you as a patient and treat you with the respect a person deserves.  Not all of us MSers are lucky enough to be diagnosed with a simple MRi and lumbar puncture.

Along my journey I learned much about MS and how it is diagnosed.  Somewhere along the way a group of neurologists decided that all people with an arbitrary amount of lesions on their MRi and certain results on a Lumbar Puncture WILL be diagnosed with MS. All others are excluded unless of course (here it is) they have documented symptoms lasting more than a year, then they MAY carry an MS diagnosis. This is called the McDonald Criteria.  Yes, yes, I know I am oversimplifying it, but essentially that is the criteria.

Not surprisingly then, we have categories like Atypical Chronic Progressive MS.  Kinda like that Miscellaneous Category in which everything that  doesn’t fit anywhere else, end up.  For all of you Christmas Special followers, consider everyone outside of the McDonald Criteria as living on the Island of Misfits.  We are like the toys that are very useful and fun but not like the others.  If you are keen on Sesame Street than we are the fourth picture-the one that doesn’t belong.  Do you see the pattern, the connection, the exclusion?

The key to getting diagnosed is finding the right person who will listen.  Now this can be a doctor (if so, then most helpful) or a neighbor or a friend or a stranger standing in line at the grocery market.  The more you talk to people the quicker you will find a doctor who is really dedicated to helping people AND who WILL help you with your illness.  Whether you are trying to get diagnosed or trying to find help in feeling better or getting meds, etc.  I think you see where I am going.

While waiting for an MS appointment recently I overheard two people talking.  I don’t mean that eavesdropped as they were sitting next to me in a very tiny, cramped waiting room.  Ok, so I am justifying it.  Anyway, these two women came in together.  One was the patient the  other a friend.  The patient was from Alaska while the other from a little state on the east coast.  And we were sitting in the waiting room on the east coast of the USA.   The patient moved from Alaska to East Coast USA because she had trouble finding treatment, doctors and diagnosis. Her friend knew of the MS clinic nearby and suggested she fly in for a visit.  Well that turned into  diagnosis, treatment, and a permanent move.

When my day were most frustrating in the beginning, I found help in a friend.  When Dr. Frick, Dr. Frack, and Dr. Headupmybutt all turned their noses up at me, a friend pointed me in the right direction.

I learned not to give up but to persevere.  Oh, I wanted to give up.  But friends and family wouldn’t stop bugging me.  I had to keep going.  Now, if you don’t have people like that then find them.  Find at least one other person who will keep you going.  Some people have found help on forums, websites, blogs, etc.

There are a lot of Dr. Headupmybutts out there.  They are the problem, not you.  It is funny because when you have a child most pediatricians will say, “Well, a mother knows,” when you bring in your sick child.  Yet as an adult, when docs can’t find empirical(hard evidence on their tests) then they say “Well, a doctor knows,”.  Stick to knowing yourself.  If you know something is wrong, then keep trying on Doctors like you try on shoes.  You know what is best for you, you know when something is wrong.  You know?

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.

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.

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”.

Hospitalization

July 11, 2008

So, there I was in the hospital.  I landed there after several episodes of severe vertigo, slurred speech, incoordination, trouble walking (like my legs no longer communicated with my brain), extreme fatigue.  Hubby brought me into the ER of my local hospital.

When the triage nurse brought me in to get the particulars of my case it was clear something was wrong.  I could understand the nurse’s questions but took awhile to find the words, then slurred as I answered. Immediately, I was given a room in the ER.  Docs came in, ordered heart monitor, oxygen sensor on my finger.  You know the routine. Once the docs found out there was a family history of heart problems (I was 37 years old at the time-only a few years younger than my dad’s first heart attack), a nitro pill was stuck under my tongue.  

What a picture: me laying in a hospital bed with wires from my chest and fingers connected to beeping machines on the wall, blood pressure cuff automatically taking readings every few minutes, hubby and son (one on each side of the bed) holding my hands.  I think they were holding my hand out of worry themselves more than me.  I knew something was seriously wrong before this point, I knew the moment I “shut down” (see previous post:Back to the beginning). This was just the beginning of the rest of my life, just not in the way you normally think of it.

After my heart proved strong and healthy (knew it wasn’t my heart-it felt deeper than that-a permanent change).  Docs decided to keep me overnight for observation.  Something didn’t add up to them.  Not a stroke as I seemed to recover almost completely.  

The next morning the attending pcp went over the plan.  I was to have an MRI and/or CT scan, follow up with the attending neurologist and then discharged.  I’ll call the neurologist Dr. Headupmyarse.  I didn’t think of him like this at first but by the end of six months Headupmyarse is the nicest name I can think of.

Without even seeing or talking to me, Dr. Headupmyarse ordered only an MRI without constrast.  I had only a brain MRI.  I say only because I continue to have brain, c-spine, t-spine, and lumbar MRIs.  Anyway, this was my first foray into MRIs.  I hate tight spaces to begin with.  Yes, I did squeeze the panic bulb.  Several times. But I got through it and so did the techs.

Several hours late Dr. Headupmyarse came in to exam me. He slowly took down my story, painfully slow, but hey that’s a good thing, right. Then he examined me. Follow the finger  upon which I noticed and informed him that I was experiencing double vision. Then came the pin test. Basically, the doc bends an ordinary safety pin and pokes you like you’re a human pin cushion. My right side in general felt the poke but it felt dull, not sharp.  My right leg from the knee down felt nothing. I mean NOTHING! I watched the pin go in, felt nothing, saw look on hubby and son. Wow! That’s weird and not in a good way.  Dr. Headupmyarse didn’t really seem to show anything.  The test continued.  He took the end of his metal handled reflex hammer and ran it up the soles of my feet. NOTHING!  No response, felt nothing.

My son, whose favorite past time was trying to tickle my feet without getting kicked in the process. Kicking was an involuntary response when my feet were tickled. My son pushed past Dr. Headupmyarse and tried unsuccessfully to tickle me. He looked from me to his dad as my hubby explained to the doc how ticklish my feet used to be. Again no response from Dr. Headupmyarse.  Finally, he went to exam my MRI.

Good news! My MRI was clear except for one small white spot which was nothing to worry about. So what was wrong? Well, Dr. Headupmyarse decided and the way he explained it seem to make sense to us that it was probably seizures or TIAs. TIAs are small strokes that leave no permanent damage, but can lead to a massive stroke. His treatment plan called for me to go home and on Monday (it was currently Sunday) his office would call with an appointment for a TEE (trans-esophageal echocardiogram) which would rule out TIAs.  No EEG because several days before this hospitalization I had an EEG which, you guessed it, was normal- No signs of any seizure activity.

I went home.  My hubby, my son, and I drove home in silence. We figured it had to be TIAs becasue the EEG was normal.  And yes, I did go home and research TIAs and TEE on the internet.  Bad move, but I needed to because that was all I could do until the next day.  TIAs certainly were a permanent change, but after reading about them I didn’t really think I fit the description completely.  Although later I met a doc who told me sometimes diseases don’t read the textbooks and act differently or Atypically-sound familiar.