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Still fighting for a diagnosis!

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I'm not sure anyone out there remembers me (pretty sure I started out like this on my last post), but I'm back and still undiagnosed. 

Last time I posted I mentioned I was scheduled for a DATScan. Good news was it came back normal! Though my doctors say there is a chance it might have been a false negative. I am showing a small dopamine deficiency from a spinal tap and was started on carbidopa/levodopa. They also did a levodopa challenge, even though the knew it would work.  

The doctors are quite sure they have it pinned down to Dopamine Responsive Dystonia or PD. They are still scratching their heads at the progression though.  They said I should be further along if it was PD, but will not rule it out.

I fell like a new man since I started levodopa just over a month ago. I can now exercise, walk normally, and even run a little bit! I may still be undiagnosed, but at least my body feels free again! I need to remember to get on here more often. It always makes me feel better to know other people out there besides my wife and family care.

Have a good night everyone!





Edited by LeeMcConnell82
Bad grammar.....

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Hello Lee,

I'm new here and your post is the first I've read because you said you were still undiagnosed. I've seen a doctor and he prescribed sinemet,  containing levodopa.  But I'm reading the side effects and I'm a bit concerned about them. Do you have any problems with the medication?  How long have you been taking it for?  All the best. 

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Thanks Dianne. You were always one of the first to respond to my posts : )

Thanks otolorin!


I started Sinemet about one and a half months ago. I have been on it before for a brief period of time a couple of years ago as well. The only side effects I have noticed is an increase in energy and sweating. The sweating is quite annoying as it takes awhile to cool down and stop. Just like any med it will effect everyone differently. If you're starting on the smallest dose then I wouldn't worry. There is very little to no harm that comes with it. 


I have been symptomatic for about 4 years now, but have seemed to hit a small plateau. For the last year I have progressed very little and it seems though I have felt it the doctors can't see it as much. The one thing that caught my attention with my last appointment is when the doc noticed my head was tilted to the right and after the levodopa it was back to normal. I think my progression was in the form of worsening dystonia that may not be as visible. 

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Megse & Lee- welcome! If your symptoms were interfering with what you wanted to do and the meds have restored your lifestyle-go for it! Live life and embrace your slow progression. I was DX almost three years ago at age 46 and I have had very little progression. I do a PD specific fitness program and I do take meds but the exercise is just as important as any meds I take. I also take dance lessons with my husband - it's one good thing that has come out of this PD journey.


Good luck...



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Lee, I've told the story about the the fellow who was still active on his family farm. He was first diagnosed, taking Sinemet at age 52.He said it helped. Amazing part was he was 90! and still active. So exercise and remaining active is key to delaying progression.  My MDS fully gets it, but a lot of doc's will comment otherwise.

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