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.
Thanks for your positive support, Caleb!! I hopped over to your blog and left a comment there, too. I really appreciate your kind words. I do hope that something I have written here will be helpful to others who are dealing with confusing symptoms.
I intend to continue posting, but I am going to have to change the title of the blog in some way, since I am no longer diagnosed with PD OR PN!! ROTFL!!!
This is great news, I’m sure this will be much easier to deal with now that you know what it is! I have created a post on my blog about your experiences. On behalf of the Parkinson’s world I wanted to thank you for your fine documentation, I know it will help many that will go through the same things that you experienced.
Thanks for stopping by, Warrior!! I see from your blog that you have been down in the dumps for awhile, too. I would wish some great news for you, too!!
Great News! I am Happy for you!
DB,
See God does love you and so do I.
Joe
GOD LOVES YOU TOO, JOE!!!! I am shouting it from the rooftops!!!
What wonderful news!! I am so happy for you!!! I know you must be relieved that you don’t have PD and PN, AND you now have an accurate diagnosis.
It is good to know that your meds are working and you are feeling better as well! Thank you for this blog and let us know more about myoclonus, as I have never even heard of it. 😉
I really was not depressed about the PD diagnosis nearly as much as I was depressed when they did not know what was wrong with me. I am very much the type who can deal with enemies that I can research about and plan for on some level. I do not deal well with the unknown. So God was giving me a healthy dose of the unknown to help me grown my faith muscle!!
I did write some about Myoclonus, but I will try to do more on it for you and others who might be interested.
Thanks for stopping by, Mary!!
I just want to say that I appreciate your blog here. I was diagnosed with essential myoclonus about 5 or 6 years ago. I am now 34 years old. At the onset, it was scary as hell. I didn’t know what was happening. It occurs, mainly, in my legs, arms and neck. The 1st dr. I went to didn’t know what it was and put me on Clonazepam. It helped, bt knocked me on my butt. I got a 2nd opinion and that dr. admitted he didn’t know what was causing it and referred me to a neurologist. After MRIs, EEGs, blood work and all that I was finally diagnosed. Zoloft was, actually, prescribed and worked wonders, but I didn’t like the feeling I got on it. I quit the meds was free the “jerks” for the most part. They have come back in the past few years and I’ve learned to deal with them.
The worst part was not knowing what it was in the beginning. Now that it’s a part of my life, I’ve accepted it. They aren’t bad. It doesn’t prevent me from doing anything I want to do in life. At times, when it does occur in public, it was tough getting a few looks, but, it doesn’t bother me anymore.
I just want to thank you for blogging this. It’s good to know that there are others. It’s hard to find anything on this topic and I appreciate what you’ve done here. Thank you.
Wow, Nick!! Thanks for sharing your story and for the kind words about my blog.
I couldn’t deal with the facial tics at all, plus I had trouble walking. I am not one to be comfortable around people, anyway, so it just made me way too self conscious, not to mention I was going to fall if I didn’t do something.
More power to you for being able to cope with the Myoclonus without medicine.
Thank you. It isn’t always easy. Really becomes apparent when I’m really emotionally stressed or really lack sleep.It was bad the last couple weeks, but has gotten better the last few days. More an annoyance than anything. I wish you all the luck with dealing with it.