GREAT NEWS!!! - My New Diagnosis Is ESSENTIAL MYOCLONUS!!

I finally got to talk to a nurse on Dr. Watt's staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson's, nor anything in the Parkinson's Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I'm going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson's PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson's that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I'm not sure how God can use me in regards to this, but I'm sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson's, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I've tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.

Primidone is HELPING!!

I've been trying to get to this post for several days now, and other things just kept getting in the way. Also, it looks like I have good news, and I didn't want to celebrate too soon.

I finally got in touch with Dr. Watts' UAB Neurology team, and he sent in a prescription for Primidone on Friday a week ago. I took my first dose Friday night, and was pretty well looped all day Saturday, and almost as drugged feeling all day Sunday. But I was NOT jerking, and my hand was still! My walking was very odd, like I was on a boat or a dock. When I stood still I kind of wobbled, instead of shaking, as if it were slowing the speed of the movements down and increasing the amplitude, if that makes any sense. That lasted for several days, but then by about Wednesday I was only noticing the good effects. As long as the dose was in me, I did not shake, wobble, or tremor at all. Ignoring the slow walking, I was back to NORMAL! Even my handwriting improved. I was not depressed, but trying not to celebrate too soon, because the next step was to add a morning dose, and I wasn't sure what was going to happen then.

I started taking a second dose in the morning as well on Monday. I do get a little woozy feeling for just a little while about an hour or two after I take it, but other than that, it seems to be helping a lot. I have a slight mouth twitch today, the third day I have had two doses, which I did not have Monday or Tuesday. But that is the only symptom other than the slow walking that I have! I do have to be more careful with steps - it's like I can't tell where my feet are.

I am not depressed at all with the Primidone, the way I was with the Clonazepam, and I am very hopeful that this medicine will work for me. I am still doing research on this medicine, but its brand name is Mysoline, and its primary use is in controlling seizures. They assured me that there were no signs of seizures from my tests, so this is what they call an off label use of the drug.

This medicine has a very long half life, and that means there is still plenty of the drug in my system when it is time to take the next dose. Actually, when I was taking just the one pill, I took it at 7:00PM and it did not completely wear off until four or five o'clock the next afternoon. I am also on the lowest dose, so there is room to go if I get used to the medicine and need to up the dosage.

Did you see me doing the happy dance????

I am so thankful to God for his tender mercies!!!!!!!!!!