Back to Square One Plus
OK, first of all the plus side of the meeting we had with Dr. Watt’s team this week. My fancy MRI and EEG did not show anything particularly abnormal, and certainly nothing that I need to be worried about. The ultra strong MRI did show signs of several Transient Ischemic Attacks, or TIA, what many people call little strokes. The doctor said they were normal “for my age.” (I hate to think I’ve reached the age where something wrong is normal, but I guess I have, huh.)
My reaction again is not what anyone would have expected. I guess I should have been jumping up and down with joy that I did not have a brain tumor, but all I could do was cry. The whole time he’s telling me that they didn’t find anything that explained my symptoms, I was jerking and wreathing all over the place. I asked him point blank if this could be that I’m just crazy, but he assured me that there really is something physical going on, they just don’t know yet what it is. If I understood him correctly, he says in time my symptoms will become more obvious, so they can make the diagnosis.
The Clonazepam had already made me very depressed, so I have been way low since Thursday. They are weaning me off the Clonazepam, since it did not help, and it was making me feel so depressed. I think they plan on calling in a prescription and trying something else, once I have finished weaning off the Clonazepam.
Hubby was really angry with me Thursday night. We finally talked about it yesterday, although I still begin to cry when I do discuss it or even think about it. He was so mad, because he said I acted like I was disappointed that I DID NOT have a brain tumor or some horrible disease. I really can’t explain it, but to have my body jerking and wreathing and nobody being able to tell me why is extremely upsetting. I know I should just put my faith in God, that this will either improve with time, get worse and provide enough information to make a diagnosis, or stay just the way it is now. If this is the way I will be for the rest of my life, then I am going to have to deal with it somehow. But for now, all I want to do is cry.
The only diagnosis they will even name as a possibility is Tardive Dyskinesia, which just means they think this was caused by some medicine I have taken some time in the past. Trouble is, whatever it was is obviously not in my system now.
They have told me for sure that I do not have Peripheral Neuropathy. I asked him if that meant the original diagnosis was wrong, or if it had been cured. He said it was possible that it was cured, but seemed to be leaning more toward the idea that the original diagnosis was incorrect. I did not get the nerve up to ask him if Parkinson’s was ruled out. That seemed kind of pointless right now, since Parkinson’s is so hard to diagnose anyway.
So, I’m left feeling miserable, with no coping strategies working for me at all. I’m crying even as I write this. I cried in church today. I cried in the car yesterday. That’s basically all I’m doing – just crying. It’s a grief that I can’t name, but it’s there.
DB, when my rug’s been pulled out from under me, leaving me in frustrating darkness, I cry, as well. It’s a release, letting all the pent up anticipation and worry and fear out…that stuff you kept inside while waiting for this appointment showing only your stoic and courageous attitude to others.
And now you are floundering once again. But somewhere there is a name for your condition and a treatment, in all likelihood, as well.
It takes time (sometimes just the ‘right’ doctor) to find a “name” for illnesses. In the meantime, you know you have something and the doctors know you have something.
Please try and let go of trying so hard to understand and fix a disease which at the moment has no name, and find the very best way to deal with today, right now.
And if that involves crying your eyes out releasing all those expectant feelings you had, go for it. It’s okay…you’ve been through so much. I always become so much stronger after such a release.
I am so sorry. My prayers and thoughts are with you, as always. Please give yourself a big hug.
Marion, everything you say is true. My head knows it, but my emotions don’t. I have slacked off on the crying to some extent, as the Clonazepam dosage is slowly being lowered. I think that has a lot to do with the way I’m not handling all this well at all.
You just don’t know how much it helps me to read your encouraging words!
All the Hugs in the world to you, dear friend!!
Caleb, for the life of me, I can’t see anything about me anyone could call amazing. But I do appreciate your optimistic viewpoint. I started this blog to chronicle what was happening to me, so others could at least have an accurate view of what one person with Parkinson’s was going through. Well, it may not be Parkinson’s, but it is definitely a Movement Disorder.
I’ve been wondering if I should change the name of the blog, what have no earthly idea what to change it to! LOL!!
I think you’re amazing, really. As hard as this is for you I know that good things will come out of this experience, whatever they may be. I can think of one experience at least that is good though, that you’re sharing your experiences with the world. Keep it up.
I look forward to your future posts.
If you can walk, and talk, and jump up and down, try and be thankful for that.
I understand that it’s hard.
I am in a VERY similar situation.
But believe that you can overcome anything. And believe in your future as golden.
I hope you have read some of my most recent posts Anonymous. Once the Clonazepam was out of my system the depression lifted. And the medicine they tried next (Primidone) is WORKING!!
Believe me, if Faith in God could have pulled me out of the mood I was in when I wrote this post, I would have been my usual optimistic self. But at the time of writing I could certainly not jump up and down, was barely able to balance well enough to walk, and my facial muscles were jerking all over the place. There are times when optimism is just not possible.
I’m sorry to hear that you are in a similar situation, and I pray you get relief.