My First Appointment with My Third Neurologist
 

I had my first appointment with my third Neurologist today. After a very thorough examination, he diagnosed me with Essential Tremor. One of the craziest things was when he asked me to draw a copy of a circle that was like a spiral formation. I began to copy it and he asked me not to press so hard on the paper. I told him that I always use a lot of pressure when I write. He told me that was an adaptation. I had learned to adapt to my tremor. He asked me to try and relax and copy the circle using less pressure. As I did, what began to form was a mess of scribble scrabble going around in a circle. You could see my tremor very clearly in my circle. At that very moment, I said, "Oh…my God, I have Essential Tremor, don't I?" Honestly, I can't remember what his exact words were. I think he mentioned finishing the rest of the exam so that he could continue to check out my tremor some more.

At the very end of the exam. He told me, "You have Essential Tremor." He told me the differences between PD and ET and told me why I didn't meet the criteria for PD, and why I did fit the criteria for ET. He determined that I DON'T have cogwheel rigidity when I am in a fully relaxed state. The problem is that I am not very good at relaxing. When I was able to fully relax, the cogwheeling went away. It was a Rheumatologist that first noticed the cogwheeling and sent me to the first Neuro. Even when I questioned my first Neuro about the possibility that I had ET because of the fact that my tremors most often occur with movement, he said that I couldn't have cogwheeling with ET. It was only a part of PD. I remember him telling me that I had really done my research though. Another thing that has always bothered me is that from the beginning I knew that my tremor was unusual because it is most noticeable with movement. That doesn't mean that I don't have a tremor when I hold a paper in my hand or move my thumb though. The new Neurologist today told me that is because anytime I change positions, even just moving my thumb from one stationary position to another stationary position can cause a tremor. Anytime a person with ET moves a muscle there may be a tremor. Also, my shakiness is totally symmetrical, which is not the way things are with PD. I have been pretty symmetrical in my shakiness from the beginning of all of this. That has always bothered me and led me to believe that if I did have PD, it sure had progressed really fast…which led to a lot of fear.

All I can say is that when the doctor was sending my prescription for a Beta-Blocker to treat the ET to the pharmacy, I began to feel the tears well up in my eyes. Then, before I knew it the tears were running down my cheeks and I had to grab a tissue. Dr. H looked at me and said ,” That’s why the tissues are there!” I told him that it had been almost three years of hell just trying to get the right diagnosis and how I had spent so much time worrying about what was really going on with my body and how I had really been let down by the doctors that I had seen. He told me that my MDS was right as far as diagnosing me with a physiologic tremor because ET is a physiologic tremor. He said that my MDS just didn't label the tremor as ET or treat me with ET medications. Where my MDS was wrong is that my tremor has nothing to do with Fibromyalgia and everything to do with ET.

Tonight, I feel pretty peaceful about all of this. I still have some questions about why I have so much pain in my body. Maybe I have Fibromyalgia and ET. I also have some questions as to why the dopamine agonists and the Sinemet seemed to help me with my symptoms, especially my pain level. My thought is that since I have had depression for so long(on and off since 2002) and have been untreated for so long, the PD meds probably gave me that "feel good" chemical that probably helped. Do any of you scientific thinkers have any ideas as to why the PD meds seemed to give me some relief? Just curious…as always!

I am supposed to wean off of the Sinemet over the next three days and then begin the medication for ET. I am hoping to see some pretty quick benefits, but I really don’t how soon that should happen. I didn’t ask! I guess I have more research to do.

I will still pop in now and then to check the boards on this forum and see how all of you are doing, but I think I will start posting in the ET forum from now on. Thanks again for all of the support that you have all given me over the last year and a half. I really appreciate it.

Sincerely,

Evonne

Congratulations Evonne. This is one club where we are happy to see our members lose their eligibility. I for one have lived in intentional denial for nearly ten years now, waiting for a day like the one you just had. My problem is ET was my first diagnosis so my day isn't likely to come, but you never know. One of these days someone may say to me, oooops we've made a terrible mistake.

Enjoy your new freedom and your new future, we're all jealous but terrifically happy for you.

Second that emotion
 

Evonne,

Fantastic news! I am in the same boat as pkell in that I had an initial ET diagnosis as well- though I presented assymetrically, so I had doubts and troubles from day one. I went on with an ET diagnosis for six years- my tremor was controlled adequately by beta-blockers and Mysoline. Another differential diagnostic aid is the alcohol test- do you have less tremor after a drink or two? I recall those silly drawing tests, I called it the 'snail test', with fondness now (it is actually an Archimedes spiral test)- I'd give anything to go back to that over the damn finger or foot tapping test.

I recommend joining the IETF (International Essential Tremor Foundation) and Tremor Action Network. While yes, ET, is benign, it can make life rather tough at times and you might want a support group and to know the latest research out there.

Best to you,

Laura

Symptom relief
 

Evonne,

There is indication that levodopa, the active ingredient in Sinemet, is now helping those with fibromyalgia. Google 'levodopa and fibromyalgia' and you'll quickly see what I mean.

HTH,

Laura

So many things running through my head!
 

Thanks for the encouragement and support. Laura, thanks for the tip on the ET sites and the idea that Sinemet helps with Fibromyalgia pain. I will look into that. I did find a group for ET on the WeMove site that seems pretty active. Neurotalk also has an ET forum, but it doesn't seem very active. The WeMove site seems like the best bet for ET support right now. At least that way I will have people to talk to specifically about ET and the medications for ET.

I am a little nervous about starting the beta blocker that they use to treat ET for a couple of reasons. The first reason is because I have type one diabetes and the Neurologist told me that it can make me have higher blood sugar levels. So, he will be in touch with my Endocrinologist about that and I will be sending more regular blood sugar reports to my doctor as well. I use an insulin pump, so any adjustments will be pretty easy to make. The nature of diabetes is kind of frustrating though because there are so many things aside from food that make it difficult to treat. I am just hoping that things don't get too crazy! The second reason that I am a little worried is because beta blockers affect your blood pressure and tend to lower it. My blood pressure is normal, sometimes a little on the low side. I am concerned about that. There are a lot of people in my family that have high BP. I have always joked that that is the one thing that I don't have to worry about. I get all of the strange stuff! Now, I will have to be a little more watchful about that, too. Third, I am a little concerned about what effect the beta blocker might have on my heart. I know that they use it for heart problems. I have never had any problems with my heart. I try to eat right and stay active and I know that diabetes is tough on the heart as it is. So, hopefully, all of the things that I do right will be a benefit to me.

Yesterday when the Neuro checked my vitals, my BP was 130/85. That is higher than normal. My pulse while resting was 104bpm. That was high, too. I am sure that it was related to my anxiety level. He explained to me that anxiety is kind of like a vicious cycle. You get anxious, which causes more adrenaline to flow through your blood, which in turn, makes you more anxious. He said that beta blockers help to stop that cycle from happening. That all makes sense to me. I have always been on the anxious, hypervigilant side of life. I have read a little about the PD personality and I pretty much fit that description to a tee! If anxiety esacerbated ET tremors just as it does PD tremors, than it would make sense that something that helps with anxiety would be helpful to settle down the tremors.

I cut my Sinemet in half lastnight and took it before bed. That worked like a charm because I slept right through the nauseous phase. I am supposed to take it for two more nights and then be done with it. I don't know if it is normal or not, but I am very stiff across the tops of my shoulder muscles again. The Sinemet really helped with that. It makes me wonder about the possibility of some sort of dystonia. My muscles are like rocks in that area. I questioned the Neuro about that yesterday and he said that he has never met a person that didn't have some knots in those muscles. I felt that was a little too easily dismissed. The problem with that is that my muscles are completely knotted up. As I said, the Sinemet really helped with the pain from that. I haven't noticed that the muscles feel any looser, but lastnight my husband massaged my shoulders and he said that they feel looser to him. He is my personal masseuse and he would notice that change more than I would. The Sinemet also really helped with the internal vibration that I feel through my body. It bugs me that it is worse on the left side of my body than the right side and that is one of the things I thought pointed towards PD. The Sinemet helped that, too. I also felt that my movements were a lot less ratchety or jerky while on the Sinemet. I was able to move more fluidly. I didn't take my Sinemet in the morning yesterday because I wanted the new Neuro to see me without it. I was way worse yesterday than I have been since I started taking the Sinemet almost a month ago. So, as you see, I am still not really sure what to think about all of this. By nature, I am very inquisitive and my husband thinks that is part of my problem. He thinks I should just take what the doctor says and stop worrying about having PD. I think that is great advice, but unfortunately, doctors are wrong about things all of the time. How many of you were told that you had something besides PD and then in the end actually wound up having PD? I have already heard of pkell and Laura. I know that your intent was not to add to my nervousness about this ET diagnosis, but I know that misdiagnosis is a reality for many people. I know that my presentation is not typical for PD, but as you read above, my response to the PD meds still leaves me with questions. That, and the things that you will read in my next paragraph.

I did some reading about ET lastnight. another thing that bugs me is that what I read on many sites said that ET isn't very common in the legs. The first symptom that I ever noticed was that I was having problems with my legs getting really shaky when I was climbing up and down the stairs. Also, I couldn't find anything anywhere that mentioned stiffness being a part of ET. I have complained about feeling very stiff for the last three years. As you know, that is more of a classic PD symptom. However, I don't have any problems with slowness or balance according to the Neurologist, so I don't fit the PD criteria. I guess there is just a small part of me that is worried that I might fall somewhere in between the two. I am doing my best to not think about it, or worry myself unnecessarily, but I have that little voice in my head that is still questioning. Maybe it is just going to take awhile to accept this.

As you can see...I am still full of questions. Any thoughts?

Evonne

Eat your blueberries...
 

Evonne,

I presented with an atypical PD and ET tremor. My initial diagnosis was ET- I began having a painful foot cramping that almost always indicates young onset PD. My neuro, I believe, placed me on a 'watch list' or listed me in his charts as 'possible PD'. I didn't receive the official 'upgrade' until six years later. Many movement disorder specialists need to see you over the course of years when you have atypical stuff going on. My other, secondary PD signs did not become noticeable to me or my MDS until last year!

I don't mean to scare you, but early on it's extremely hard to nail down a PD diagnosis; especially when all the neuro really has to go on is tremor. My head tremored and still does -this is not PD. I still have an atypical PD tremor; it is action oriented and a high frequency, though in the last year, I developed a resting tremor. My secondary PD symptoms are slowness and stiffness.

After awhile of living with any of this, it becomes difficult to differentiate any symptom from side effect once you start taking drugs. For my life as a person with ET, I took Inderal and Klonopin. It worked fairly well; my tremor really only emerged in social situations when self-conscious. It never helped with my foot cramping; only Sinemet did that and this was undeniable PD in my mind.

Please don't drive yourself crazy with second guessing all this- it's not good for you no matter what. Stress triggers illness in many of us, so why welcome something with open arms. Take your neuro's word for it, and unless you have any major 'red flag'...just focus on being well; eat well, exercise, reduce stress, and eat neuroprotective foods like blueberries and look into supplements to keep your oxidative processes in check.

Laura

about half the folks in my DBS group are there because of ET. The good news is that it is benign in most.

Charlie

First Day of New Medication for ET
 

I took my first Metopropol ER 50 mg. (Beta blocker) for the ET tremors this morning. So far, I haven't noticed any reduction in my tremors at all. I didn't ask the doctor how long it should take before I notice any difference, but I think I will put in a call to him a little bit later this afternoon. The only thing that I have noticed from the beta blocker is that I feel more tired. The aching, burning, and stiffness across the top of my shoulders and my neck has been back since I stopped the Sinemet. My tremors seemed worse after going off of the Sinemet too. Oh, and since beta blockers can cause depression, I doubled my antidepressant, Effexor. The doctor said that would be fine. Well, that's it for now. Just checking in.

Love,

Evonne

Beta-blockers...
 

Evonne,

From my recollection, the beta-blocker is not an immediately acting drug. I think it take a few weeks to build up in your system. Your doctor should be able to tell you what to expect. Keep in mind that there are no tailor made drugs to treat ET- these are off label and people have varying degrees of responsiveness to them.

I think I read that about 60% of ET patients respond. There is another drug called Mysoline that you might ask about if the beta blocker doesn't seem enough. I took that with a beta for awhile but that made me over the top sleepy. :)

Please continue to let us know how you're doing.

Laura

Leg cramps & tremor
 

Try pumpkin Seeds..eating a handful a couple times a day relieved my tremor foir a while...also helped my dad's ET. Now PD has progressed I need my fava tincture also, but am doing well on it. Have Peace:)