Superbowl meltdown plus the first of many

Okay, I just re-read the last post and I may have missed the point I was trying to make.  For those of you just going through the diagnosis phase or those that know someone that is the anxiety of not knowing what's wrong can be worse than finding out. There are a whole host of diseases that cause Parkinson's like symptoms and some of them are pretty nasty.  There is no definitive test to say you have Parkinson's so even being told you have it is still a guess until they can see how you progress.  At this early point in the diagnosis phase, the neurologist will tell you that you have Parkinsonism symptoms.  Basically, you have something that makes you look like you have Parkinson's.  Here a partial list I found of things, besides Parkinson's, that can cause these symptoms:

• AIDS 
• Corticobasal degeneration
• Creutzfeldt-Jakob disease
• Dementia pugilistica or "boxer's dementia"
• Diffuse Lewy body disease
• Drug-induced parkinsonism 
• Encephalitis lethargica
• Essential tremor
• Genetics
• Multiple system atrophy
• Pantothenate kinase-associated neurodegeneration
• Parkinson plus syndrome
• Progressive supranuclear palsy
• Toxicity due to substances such as carbon monoxide, carbon disulfide, manganese, paraquat, mercury, hexane, rotenone, and toluene (inhalant abuse: "huffing")
• Vascular parkinsonism
• Wilson's disease
• Paraneoplastic syndrome

Yeah, that's what I thought when I first read through this list too.  If you are anything like me, you'll painstakingly go through each symptom for every disease listed and crosscheck against your own list.  Yes, self-diagnosis will drive you crazy.  I don't recommend it because it's like going to web MD and typing headache.  You either have a sinus infection or a tumor. That said, you know something's wrong, you don't know what and this list is in front of you.  Knowing that it could be months or years before they figure it out isn't helping. There is the DATScan test which does narrow the diagnosis down to a few possible diseases, but you still have to wait to see the progression. Bottom line, it's a waiting game no matter what you end with.
   I promised you a meltdown in the title so here goes.  It's Superbowl Sunday and as the day progresses, I feel worse and worse.  Every symptom is peaking at once including, for the first time, I think, my blood pressure.  It made enjoying the game impossible. Major tremors, pain in the muscles, stuttering, dizzy and as I mentioned it felt like my blood pressure was pounding,   By 9 pm I had about enough and actually got in the car drove to the only place I knew open that late that might have a blood pressure monitor, Wegman’s Supermarket.  I DO NOT recommend anyone that ever thinks their blood pressure is spiking or for that matter have a host of other symptoms climb in a car and drive anywhere.  I just couldn't take it anymore and had to get out.  Yes, I should have asked for help but, if you know me at all, that's not my specialty.  Everything in my body seemed to be against me or at the least, out acting on its own and not helping me.  I may never know if my theory is true but I'm still leaning towards your body is reacting to getting hit with lower levels of dopamine.  It doesn't know how to handle it which causes some strange symptoms.  I'm not a Doctor and don't pretend to play one on the internet, but something is causing these problems.   Well, after all that, bad news, as the pharmacy was locked up and I couldn't find out what my BP was.  By morning, though, I was feeling better, but it would have been nice to know if I was right and my BP was high.  I know I was told Parkinson's isn't supposed to affect things like blood pressure, but something was happening. What the heck could be going on?  It would end up taking a long time to find out. Yes, that's a tease for another, much bigger meltdown later.

February 10, 2011
MRI today of my head and neck.  Looking back it was the first of more than 10 that I have had.  Admittedly, I'm in a research study where I get two different kinds every year plus I had some back issues requiring more imaging.   In the tube I go, as we've got to make sure it's not anything other than Parkinson’s. So not only do I have to come to grips with the fact that I may have a degenerative, incurable brain disease but, now have to worry about tumors, lesions or a host of other things. I did learn something about myself during my first MRI though.  I'm lying face up on the table about to be slid into the machine. As I start to enter, the roof of the tube comes into view.  It's about 2" above my nose.  I felt instant panic, threw my hands up grabbing the machine and said "nope, can't do it."  The technician was nice and asked if I was claustrophobic.  I never had been before so why now?  What to do, I need this test!  I'm tired of waiting for answers, but I knew I wasn't going to be able to go in there.  The solution?  The technician loosely placed a small towel over my face so, if I opened my eyes, all I would see is towel above me like I was in a little tent.  No idea why it worked, but it did.  I've used the same technique ever since.  Of course, like everything with this disease, I have to wait for results from the MRI.  Nothing seems to be in my favor in this whole process.  Another week of waiting.
I still haven’t told anyone what is going on yet.  Well, Rachel told her parents, she felt she had to.  I’m going to wait until I see the Neurologist again because by then, he’ll have the results of the blood tests and MRI.  If they are all clean, then confidence is high that it's Parkinson’s.  Then I’ll have to figure out who to tell and when.  Also, I’m going to transfer to Rochester, Strong Hospital to be precise.  The specialists up there are getting quite a bit of press lately.  It would be good to have them look at me.

It's now Thursday and finally time for Doctor's analysis.  This visit was killing me as the nurse asked question after question.  I know she was just doing her job, but she is not who I came to see.  Enough with the under-card, BRING ON the main event, I want to see the neurologist!  Finally, he arrives. reviews the notes and asks questions about what the nurse wrote.  All the while, I’m dying inside wondering what the results are.  After minutes that felt like hours, he starts to read the report and asks if I brought the disks of my MRI.  Disks??  What disks?  Weren't they supposed to send the information over automatically?  I’m freaking out on the inside now thinking that I’m not going to get results today.  He said he had the notes and wouldn't need the MRI's but would follow-up to make sure he had a copy for the file. So I start thinking again about the list of other possible things it could be except Parkinson's.  Weird how you start to root for the incurable, degenerative disease because other things on the list are worse. "Come on Parkinson's!"   Then he says it, test results were negative. Great, I got my wish, it's the incurable one.

Up next: Time to tell and the new emotion coaster