Five years with wrong diagnosis

[Vintageglam]

I’m a 65 yo woman with medical background (pharmacist). First Parkinsons symptoms appeared more than five years ago: tremor both hands. I had some balance issues and abnormal gait. I always believed it was Parkinsons but the neurologist I first visited insisted it was essential tremor and treated with primidone. The tx never helped of course. I finally changed to new neurologist who immediately diagnosed Parkinsons. Taking rasagaline and Rytary now.

[aspergerian13]

You may be a PIGD subtype. PIGD has ramifications. Search HU PD and google.com for PIGD and Parkinson's.

[kaypeeoh]

Is the new medication helping?

[Vintageglam in reply to kaypeeoh]

Yes, very much. I still have leg issues but the hand tremors are so much improved that I returned to computer programming.

[kaypeeoh in reply to Vintageglam]

The improvement in Rytary kinda means you have Parkinson's.

[Kia17]

Did your neurologist diagnose your PD with just assessing the symptoms? Have you done DATScan?

[Vintageglam in reply to Kia17]

DATScan scheduled in two weeks.

[Kia17 in reply to Vintageglam]

Any supplements you are taking? Exercise?

[Vintageglam in reply to Kia17]

No supplements. Walking 1 mile a day plus water exercise class twice weekly.

[Ramiroe72]

What you can get from DAtScan? Is this the first time that you will make this scan in the previous 5 years?

[rideabike]

I had a similar experience but it's funny how we seem to know they're wrong even though it's not common to question specialists. Your symptoms were obviously not ET. So glad you pushed forward to get the diagnosis.

[reedboat2]

I had similar experience. Mis-diagnosed with ET about a year before PD diagnosis. Also had balance issues, affected gait, facial paralysis. Finally saw neurologist in 2017 who took about 15 minutes to diagnose PD. Now 2.5 years later many early symptoms have resolved. No more facial paralysis, speaking much better, balance and gait much better.

[rideabike in reply to reedboat2]

If you don't mind me asking....what are you taking to reduce the facial paralysis ( meaning Parkinson's hypomimia or reduced facial expression?), and your other symptoms?

[reedboat2 in reply to rideabike]

Aerobic exercise 3x per week, Tai Chi classes at least 2x per week, yoga class at least 1x per week. Used to take RSB boxing classes but switched to Tai Chi. Low carb diet with intermittent fasting. Mucuna every 4 hours, sometimes with c/l 25/100. Work at getting good sleep and reducing stress. Vitamin B1 injections 2x per week. For supplements see post by Sunvox on Ataxia, or I can DM you my complete list. That’s about it. Good luck and hope it helps- John G

[rideabike in reply to reedboat2]

That's very helpful. I am looking at the pool schedule for some exercise soon now that winter and snow is here. Taking B1 now and working at sleep and stress reduction. I'm an older lady so not too many stresses except the high anxiety. It is much appreciated that so many people on this site are interested in the plight of others. I'm using NutriVita mucuna and it works very well. Take care John....

[Hidden in reply to rideabike]

Caution is needed due to danger of drowning

[rideabike in reply to Hidden]

I agree...I was always a good swimmer but got a surprise a few years ago when I almost hadn't the strength to complete a swim in deep water. At the time I didn't understand why but now I'm careful because I know why.

[reedboat2 in reply to rideabike]

If there’s Rock Steady Boxing near you I recommend that activity, particularly in the winter as it’s indoors. It’s also a nice community thing, for me it was, and I’ve heard that from other places. The instructors are very supportive as are the participants. It was fun, but it didn’t fit in with my schedule as the classes were mid-day. The Tai Chi classes I attend are evenings and weekends which works better for me.

Good luck and all the best over the Holidays- JG

[FergusonJR]

Both hand tremor usually does not mean PD as it starts out unilateral/one sided. ET is usually both sides from my studies. Has anyone pointed out this point? My initial neuro told me my one side tremor was not PD but ET. Turned out he was wrong and apparently did not know this important distinction, and like you I was run down the wrong trail, for eight months before I went to an MDS at my insistence and was dx PD!

[aspergerian in reply to FergusonJR]

FJR,

A citation or several would be helpful.

[docjleonard55]

I was going to a doctor with increasing symptoms of tremor, rigidity, and balance issues. She claimed to be "an expert in Parkinson's", but misdiagnosed me for 2 years. The final straw was when she said that she thought it was psychosomatic and I would get over it, hah! Two weeks later I saw another doctor and got the diagnosis, and boy did I check all the boxes.

[HekateMoon]

Ive been 2 years waiting for a diagnose. Iam on social welfare so cant change neuro that easily...