Thursday, April 18, 2013

On the road to a diagnosis...

I met with a neurologist on Wednesday thanks to the Michael J. Fox Foundation.

The following is what I wrote as a Facebook note for my friends and family, and I am going to share it here with you all as well.

I met with Dr. Maitland and a group of five medical students . After asking me several questions about my symptoms and my problems, he had me leave the room and he talked to Jack and Alex alone for about 30 minutes. Jack told me that he asked him and Alex several questions about what changes they had seen in me, and things they had noticed. The Dr asked Alex was Mommy acting strange, and her answer was " Mama talks funny, and she falls a lot, and she drops things all the time. Her hands are bad, they do not work right."

After Jack gave his account of the things he has noticed, I was called back into the room and I was put through a series of physical tests. I had to do what I call 'drunk tests." He made me walk in a straight line, and touch my fingers to my nose. He had me get up and down from a chair many times, and I had to walk up and down a short flight of stairs several times, with a strapping young medical student there in case I fell. He was very attractive and I thought about flinging myself off the stairs just so he would have to catch me, hehe.

I had to "high step" which was pick my legs up as high as I could, with my knee towards my chest, several times on both sides. I learned today that with Parkinson's, one side  of the body is usually worse than the other, and my left side is much worse than my right.I was afraid that today would be a "good body day" meaning I would not have as  many problems as I do on other days, but luckily  it was not a "good body day" and my speech and motor skill problems were very apparent.

I then had to walk around  a little carpeted track, that has slight hills ( speed bumps ) and slight dips in it, and he watched me as I navigated the track several times. He said that I overcompensated on the hills, picking my legs up higher than needed, and I was not gauging the depth of the dips properly, I was trying to brace myself to step down way too soon.

He let me rest, and gave me some water, and then made me do the whole process over and over, about ten times. I was exhausted and shaky as a newborn colt, but he told me that the symptoms presented better when the body was pushed into being tired, the problems became more apparent. He was right about that, by the time we got out of there I could hardly speak, and my legs felt like they were going to give out. They STILL feel like that, hours later.

He had me lie on a table for about 20 minutes, so he could see the full body spasms and jerks that happen from time to time, and my body did not disappoint, it happened several times. He checked my reflexes and I told him I was very sensitive to touch. When he hit my left knee, I almost took his head off, my left leg flew up in the air. Alex thought this was hilarious. He moved to the side of me when he did the right side, and the reflexes there were not as overly sensitive as the left.

He had me toss a beach ball back and forth with him a few times. I missed it twice  and got smacked in the face with it. I thought it was closer than what it really was. The same issue I had when navigating the dips in the track, I thought they were closer than what they were.

The Dr. asked me a ton of medical history questions, and questions about my parents and grandparents. They had me bring in samples of my writing, and since I am a paper hoarder, I still have reports I wrote in middle school. I had plenty to show him from way before my symptoms started ( 2007 ) and  some after, and then he had  me copy a paragraph from a book in cursive and longhand. He spread all of these papers out on a long table, in a timeline, and called the students over to look at it. I could not hear all of what he told them, but what I did catch were things like : See how smooth and flowing her earliest papers are, and as she progresses, the letters are not formed properly, and writing is shaky, and smaller." Once he got finished, she turned to me and told me that in Parkinson's and some other nerve disorders, handwriting was a huge indicator that there is a problem. The writing becomes messy and the words get smaller, because it is harder to control the pen or pencil. He showed me that my handwriting today was half the size it was when I was in middle school, and much messier now than it was back then.

Jack then asked him about my ability to type with no problems ( hands wise, I can hardly hold a pen to write anymore ) and why was I able to type and not do other things ( he was not asking to be nice, it bugs him to no end that I can type and not do other bothers him that I am on the computer all the time. ) and the Dr. said a different part of the brain controls the movement of typing than it does with speaking or holding a writing tool. I did not have to squeeze anything or put much pressure on the keys, making it much easier to type than to write or do other tasks with my hands. Then he asked me if I had any trouble with typing, and I told him that I type between 80 and 90 WPM for years now, but over the last two years, my spelling has suffered, I type the wrong words even though I do not mean to. For instance, I WANT to type " I had a good time last night" and even though that is what I think I am typing, it is what I intend to type, what comes out is " I heard a grand itch last nite." Words that are correct, but not what I wanted to type and not what I thought I was typing. This caused him to write furiously in his chart.

Then Jack asked about my reading. He told the Dr. That I used to read ALL the time, for hours on end..two and three books at a time...and now I would read for maybe ten minutes and stop. This very stern and professional doctor ( who kind of scared me, he has no sense of humor ) turned to me and said in this strange and really gentle voice: " Do the words not look right anymore? Do you have  to read the page over and over to get it to sink in or make sense?"

Something in his voice caused me to get tears in my eyes, and I nodded and said yes, but I never mentioned it to anyone ( I was VERY surprised when Jack said that, I did not realize he noticed me not reading as much ) because I just thought my eyes were tired or something, I recently got new glasses.

This stern man, who had shown not one ounce of personality or even friendliness thus far, patted me on  the knee and said in the most compassionate voice " It's not your eyes honey, it's your brain..." and wrote for almost ten minutes in his chart. I was wiping tears the whole time. I am not sure why, but something in his voice and the fact that there was some unseen reason just struck me really hard and I got choked up. The fact he called me honey surprised Jack and I both, because before that, he showed not one iota of warmth or anything, so it stuck out like a sore thumb.

He turned to Jack and told him that one day I might not be able to communicate in any way other than typing,so he needed to not pressure me about it. I smiled and Jack was a little taken aback. Maybe now he will not give me so much grief about "talking" on the computer.

After that, he excused himself for about 30 minutes, and when he came back he told me he was in consult with another doctor and they watched the video of my session together ( I guess they fast forwarded a lot, we had been there for over two hours at that point..)

Then he told me he was ordering me a series of tests. He had the three MRI scans I had done a while back, but he said he wanted new ones. He ordered an MRI, with and without contrast dye...a CT Scan, a full blood work panel, and something new called a DaTscan...which he was all excited about. Apparently it measures the levels of Dopamine in the brain. It is a new thing, it has only been approved since 2011.

Once I have all those scans done, I have to go back and have a follow up and see what they say about my results. He told me that there was definitely something wrong in my brain, and he was not going to stop until he found out exactly what. He said way to many doctors were to eager to slap a Parkinson's diagnosis on a person because they did not want to go through the work of finding out what it is. MS and some other disorder that I now can not remember the name of closely mimic other nerve disorders,  so he had to weed out other things before he can say if I do or do not have Parkinson's, since Parkinson's is more of a "You don't have these other things, and we don't know what it is, so we call it Parkinson's.." as a catch all.  Parkinson's is what they tell you that you have when they can't diagnose you with anything else. He assured me he would rule EVERYTHING else out before we were through. He did say he would not give me any meds ( like the Neurontin ) until AFTER I have the tests done, because the different meds can  mask the symptoms in  the brain and nervous I have to be "clean" until all the testing is done, and once he gets the results we can talk about medicine.

I was very scared when I got there, but I felt much better about him by the time we finally got through. He seems to want to help me, and he does not want to rush me along and slap me with some disease that I might not have.

So that has been my day. I am tired and shaky, but I feel good about my doctor, and his promise to not write me off, to really find out what is wrong with me.

If nothing else, the validation that there really is something wrong with me was worth going through all know I am not crazy, and I am not making it all up. Jack has acted totally different with me. I know he thought I was telling the truth, but I also know he thought I might have been milking it a little so I did not have to do as much. Now he knows 100% that I am not milking it, I have a real problem, and now we will find out what it is.

I will update once I know more, after I have the tests done!

It was a very hectic experience, and I am still very tired today...I admit it. Next week I start calling to get all these tests set up, since we do not have a dime to our name for gas at the moment. I have a good feeling about it all, and I am hopeful that we will find out what is wrong with me soon.

So that is where things are for now. I will share my progress with you all along the way!

Have a great day!

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TantraWave said...

Thank you for sharing with us Bella, all the best ... Much love, D <3 (PS you should write your story and make it a book)

Magaly Guerrero said...

Sometimes we need to hear it from another person (especially from a physician) after that, we become stronger, we cope, we deal, we conquer ;-)