A Long Story On My Parkinson's Diagnosis, Or How It All Began.

I started back in 1998-1999 with odd things like really bad cramps in my feet. The pain would be so bad that I would feel like I was going to pass out. They'd also hit my hands too, and I had awful headaches and a stiff neck. The spasms would sometimes hit me while I was driving. I blamed this on the fact that I was a computer technician, and that I used to lift printers and old PCs. I figured I had hurt my back. I also figured this could also be from my car because of the low seats. I was driving a Toyota Celica which was really low and difficult for me to get out of. The headaches neck? Ah. Sitting at a computer. This must be eye strain and a stiff neck. I was sent to a migraine doctor who noticed some odd neurological things, but no sign of a migraine.

Eventually, in mid-2004, I developed a tremor in my right hand after playing the piano. I also had some other coordination issues and felt very unstable periodically. There were days too when I felt internal vibrating feelings, wicked fatigue, and a lot of stiffness. My primary doctor sent me to a neurologist in mid-2005, after sending me for various tests.

I saw my "new doctor" for about 15 minutes. He had me scribble on some paper, write a few things, get up from a chair, and say some sentences. He then asked me about activities. I told him about the piano. I played for years with no issues, now all of a sudden I have problems! He then handed me a brochure about focal dystonia. He had a stack of brochures stapled together, and he took one off the top like he was handing out a menu at a restaurant. I asked him what this was all about, and he didn't say much other than just read the brochure rather rudely and abruptly. I then asked him about treatments, and he said I needed Botox shots. I then asked about alternatives. He got mad at me, and prescribed klonipin rather reluctantly and said something sarcastic to me which I can no longer remember.

I then went for some in-house tests from his associate. My neuro told me that he had made up his mind this was dystonia, but just to make sure, he'd have me do these tests. She performed an EMG and other neurological tests. She saw some pyramidal and extra-pyramidal involvement as well as some other things. I then saw my neuro again that day. He said the same thing about the dystonia, and that was that. There was no mention of anything else, not even in my records.

A few months later, I had the spasms again in my feet. This time while I was driving, they were so bad, I had to pull off the highway. I told him about them, and nothing was done. A few weeks later, I had them on the way to his appointment, but he ignored me as though they didn't exist. Then in mid to late 2005, I developed a really stiff right shoulder, reduced arm swing, tremor on my right side. My thinking wasn't clear either, and I had really sore biceps nearly all the time. Periodically my left hand would clench up, and my manager made comments, jokingly about it, like I was mad at someone. I called my neurologist's office and asked him if it was PD. He got mad at me, actually yelled at me, and reluctantly prescribed Sinemet, telling me I was too young for this to be PD!

The Sinemet worked! I felt 100% better. The clenching, stiffness, tremor (though slight) disappeared. The internal vibrating disappeared, oh was I happy. I told him the next week when I saw him. Oh he says. "A little bit of uptake issues, but no you don't have PD. You're too young to have that. This is dystonia." DRD I asked, after reading about it, and he said possibly, but very pleased with himself at the same time.

My primary doctor was upset that I had "pushed" this neurologist. I wasn't supposed to question his diagnosis, after all he's the expert. As time went on, and I kept seeing the same neuro. I was put on Mirapex , which helped some, along with Sinemet, Sinmet CR, and some Baclofen for the spasms. Hmm... What's going on here? This isn't PD is it? No. It's dystonia.

Then in late 2006, I saw him again. The internal vibrating started up again, and the stiffness had come back. He increased my Mirapex, and we discussed these other problems. He asked me about the piano, which I was back playing again. In a report to my primary care doctor, he forgot to mention any of this. All he said was that I am back to normal activities. When I saw my primary care doctor, he looked miffed at me. I couldn't figure this out, and then he got close to me and whispered in my ear, stating that perhaps this was in my head, and it was all psychosomatic, etc. I was puzzled, and when he showed me the report, I was shocked! I then told him about the visit, the increased Mirapex, the Sinemet CR, and yes I was playing the piano again. His face got beet red, and he got very quiet. He then asked me about seeing someone else. It was then I asked to go the Lahey Clinic. Where I knew there are much better doctors than the quacks in my area.

How I ended up at the Lahey is what I call destiny. I was playing he piano at a party, and had to stop because it was medication time. At this party was an older gentleman in his early 70s. He said to me I know exactly what happened to you. I looked at him puzzled. He said his wife, who had recently passed away, had Parkinsonism, and then heexplained the details. She sadly had CMDG, one of the plus syndromes, and he said to me to go to the Lahey Clinic where the best doctors are. That's why I ended up there. It's a good thing I spoke with this man. Otherwise, I don't know where I would have gone.

That's how it all started. It turned out my original neurologist had setup a Botox clinic and was looking for patients, I mean customers. How obvious could this be! If it wasn't for me fighting the system, I wouldn't have been where I am now. My current neurologist told me it was a good thing I didn't go along with him and his treatments.
JCPP7622 JCPP7622
3 Responses Dec 9, 2012

I too had symptoms for years that were misdiagnosed I was treated for several things along the way, then the tremors came. |I remember the neuro saying that it could not be Parkinson's because there is no pain in Parkinson's. Even now it is still hard to be treated properly. I suffered devastating problems with pramipexole side effects. You have to e proactive even if you find that uncomfortable or you'll suffer, or even die along the way.

My tremor started on my right side and then went to my left. We'll see what happens. Whatever it turns out to be, I've come to accept it and embrace it. It is what it is. :o)

Thanks for the info.

You're welcome. I'm glad you've accepted your destiny. This is the toughest thing for many people. It took me about 2 years to realize I wasn't going to die right away. Now, like you, this is it. It is what it is, and there ain't much we can do about it. :-)

Have you been tested for metal poisoning? This can cause many of the same symptoms you have. In particular copper causes Wilson's Disease. I was tested for this, but everything was fine. My doctor also checked me for heavy metals and chemicals. I worked in the electronics industry, and was exposed to arsenic, cyanide, lead, tin, mercury, and who knows what else.

If you haven't been tested, please ask your doctor about it. There's nothing like a test to rule out these things first.

Take care.

Yes, I was tested for these also and everything came back normal. It's amazing how much scientists don't know and are still learning about the human body!!! I've had MRIs, an EEG, ANAs, tests for lupus, syphilis, rheumatism, metals, thyroid, ... and it seems like only time will tell.

Thank you for sharing your story. I am 42 and we have been trying to diagnose me for two years now. I have resting tremors on both my left and right sides now and a sore shoulder every day. As soon as I wake up in the morning, I have a resting tremor somewhere. My neurologist is leaning towards early-onset Parkinson's, but no diagnosis yet.

Hi Greg,

I wish you lots of luck with your diagnosis. I feel for you though. That internal vibrating, tremors, and stiffness is awful. It weighs on you mentally. After your diagnosis, you'll actually feel relieved, even if this isn't PD. For me it was affirmation of something that I suspected all along because my grandfather had it.

The symptoms you have though, aren't actually that of idiopathic Parkinson's, which concerns me. Bilateral tremors are rare, usually. That's not saying this isn't going to be the case, because PD is a boutique condition, meaning everyone is different.

There are some excellent online forums that I recommend joining. Check out Patients Like Me, and NeuroTalk. I'm a member there as well, and contribute lots of posts. PLM will also help you track your appointments, medication, changes in your condition, and other things.

Keep in touch and let me know how you're doing.