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?
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.
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.
Atypical Multiple Sclerosis 