I was initially diagnosed with dystonia in 2011, and eventually ended up with a Parkinson's diagnosis a few years later. There is actually a test now that can detect Parkinson's, a specialized CAT scan that looks for Dopamine deposits in the brain. It's called a DAT scan. Only downside is a lot of insurance won't cover it. However, knowing for sure might be worth the expense.

Thank you mongo42 for reaching out to me. It feels better knowing there is support and others who have been in these situations. How many neurologists did you go to before they realized you had Parkinson's?

Welcome aboard. At one point, my neuro felt he was seeing signs of both ET and Parkinson's (motion and resting). He sent me to a motion disorder neuro to get a more definitive answer. If there is one in your area, that might give you a more definitive answer. She concluded at that time 5 years ago, it was ET. BTW, my older sister did have Parkinson's. It sometimes happens that people have both, which was my great fear. They have very recently made a connection between the gut and brain for Parkinson's, with a possible surgical intervention Hugs..

Thank you SimpsonsOK. I am thinking I may have the beginnings of Parkinson's, but in the meantime am going with the ET idea. I just don't know. But I am taking the suggestion and have an appointment with a neurologist movement disorder specialist in August (first appointment available). I am hoping she will be able to give me a good firm second opinion. I go for an MRI/MRA today to rule out any other underlying problems. I really appreciate this site and it makes me feel better talking to others who are going through the same issues.

SC, Glad you were able to find a motion disorder neuro. As I said, my regular neuro saw some resting tremors, along with flunking the ET test, so I understand your fear, and the waiting to find out anxiety. There has been so much research going on for all the motion disorders that we can be grateful that we are living at this time of breakthroughs. Sometimes the site is quiet for a while, then it picks up. I should have seen a neuro sooner, but I already had so many doctors adding another was not what I wanted to do. Glad I did. Will see him midday on Monday, and am guessing he will either increase or change meds. Such is life. Waiting with you. Comforting hugs.

SC, well, the neuro did add an extra 1/2 primidone for the afternoon. He is concerned because I have had a few falls, and it does have a barbiturate in it. Next visit I may need to be clearer that the balance problems have occurred at various times, including during the space when the morning meds would have worn off, and I have not taken the evening meds yet. My bad. How are you doing? Waiting for answers has always been really stressful for me. Stress will always make symptoms worse. Comforting hugs until next time.

My first neuro was out of state, at the Mayo clinic in MN. At the time my symptoms were so subtle it didn't look like Parkinson's. A few years later when things had gotten a bit worse I found a local neuro here is Austin, TX that founded an entire movement disorder clinic -- PT, nutrition, neuro, etc. Very holistic approach. I'm very fortunate that I found him. He examined me and immediately said it was Parkinson's, then we verified it with a DAT scan.

My advice to you is take your time, do some research, and don't let your imagination run away with you on this, Whatever you have, if it gets worse it will most likely do so very, very slowly over a very long period of time. Prepare a list of questions for your movement disorder appointment. If you don't like that neuro, find another. Take care of your body -- Good diet and exercise are very important. Brisk cardio is neuro-protective, and so are some foods and supplements. I am on a ketogenic diet for that reason, but I would not recommend that without a doctor's supervision.

SOK, sorry you're having trouble. I was on five different tremor meds for a while and the side effects were horrible. After my DBS surgery I was able to get off of all of them, and now most of the pills I take are vitamin supplements that are neuro-protective (krill oil, vitamin D3, etc.)

Mongo, I appreciate the input. Various doctors have advised various diets due to other issues. My PCP has me taking D3 and fish oil, among many other meds from various specialists, but would love to know of others on Agree with Mongo's previous reply. Anxiety and motion disorders are not friends. I have arranged my schedule over time to see people, do chores and errands, during the least stressful/tremor times. Hugs to you both.

Hi Long I and Simpson's. I tried to get results today of MRI/MRA from Friday and the women at the desk at the neurologist office are totally nasty thinking I'm a pain to call. My healthcare system has a portal but nothing fromvthe neurologist office gets on it. Shows me how the office is run. I'm supposed to wait til they call me.
Anyway. I had total knee replacement this past January and doing ok with that, but surgeon just put me on a little Prednisone for inflammation. That gives me headaches and I'm a little scared to take the propanalol with the prednisone. The propanalol seems to be doing nothing to help. I'm actually looking forward to going to movement disorder specialist in August. I'm frustrated but taking one day at a time. Thanks for talking. It really helps. When I get results saying nothing showed up on the MRI, I'll let you know. Then I'll be back to square one...is it ET or PD? Hugs.
Shortcircuit

Sorry Mongo

SOK, I'm on a small dose of Selegeline for its neuro-protective properties, but it's also an MAOI used to treat depression and anxiety. You might want to talk to your neuro about that.

SC, I feel your pain -- getting my cocktail of meds sorted out was a very difficult time, and it seemed like it took forever. Keep at your doctors about it until they get you stabilized with the ones that work for you. They're out there.

Can't sleep so thought I'd take a minute to chat. MRI/MRA negative. I actually found out from my GP's office. So nice there; not so with my neurologist's office. So the nurse there recommended I ask neurologist to order an EMG. Have you, Mongo, or SOK ever had this test? Not afraid.just wondering if necessary. GP NURSE said be aggressive in trying to get this ordered. Thoughts?
Hugs and have a good holiday
Shortcircuit

I haven't. Did the GP doctor agree with the nurse? I would ask a whole lot of questions about what the benefit would be, and why she is pushing it. I would talk to my neuro about this, and get feedback from the neuro, who is the expert. Just what my plan would be. Hugs.