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Topic If not PD, then what the heck is it? Go to previous topic Go to next topic Go to higher level

By Lacy On 2011.06.13 13:26
I've been posting on here for awhile now, always under the impression DH has Parkinsons. His neurologist says it is, therefore I believed it to be. Last year around September he began to fail....many days could hardly get out of bed, doctor adjusted meds with no results. I resigned myself to the fact I probably wouldn't have him for too much longer. Through the holidays he rallied, the new year brought a new man....steadily he improved.

Today he is on almost no PD meds, is getting around very well albeit very slow and hesitant, he is alert, we have conversations, he is willing to do as much for himself as is physically possible, and challenges me on things such as my driving (so what's new about THAT?!), my phone calls, meals I cook, etc. In a way, it's like getting him back, but without the disagreements we used to have.

His neurologist is puzzled. I am puzzled. So if it's not PD, what's going on. Seems as though the only condition resembling Parkinsons is the gait. He's been like this now for more than 4 months and almost daily I see a little more improvement. I pray this is not the "calm before the storm".

By karolinakitty On 2011.06.13 22:21
Lacy... was he previously on any antipsychotic/depression drugs?
If so have they changed?

If all the above is true than that is your answer. Many antipsychotics/depression present side effects of resembling parkinson's disease.

There is also uric acid build up which can present itself as parkinsonian..

Also some kidney related issues/diseases can have some of the symptoms of PD like nephritis

Could be any of the above......
hope you find out

By Lacy On 2011.06.14 06:44
Nope, he's never been on any anti-depressants or anything close to it. He has no kidney issues at this time and I'm not sure about the uric acid build up. These are very good observations. I've been reluctant to believe the Parkinson diagnosis for a long time but so many symptoms pointed to it that I went along with it. Now I'm just not so sure and don't know what to do about it all.

Also, wouldn't uric acid build up cause pain as in gout?

By anidaholady On 2011.06.15 16:41
Just out of curiosity, how long has he had "PD"?

By Lacy On 2011.06.15 21:35
He's had tremors all the 46 years I've known him as did his dad. They were considered to be familial tremors. 6 years ago his neurologist said he had Parkinsons. I didn't believe it and we ignored it for awhile. Two years later he seemed to be getting worse as I noticed he hadn't been taking any of his usual meds and we went back to the doctor. That's when his neuro started him on carbidopa-levodopa and the other one, I've momentarily forgotten the name of it.
Last year his primary physician noticed a change in his kidney function and wondered if he'd had a change in meds. I told him neuro had been increasing the "other med" and they conferred, the neuro reduced the dosage....from 12 pills a day to where he's only taking one a day now and he's doing better now than he ever has.
As I said, his gait is the only indicator of Parkinsons, very slow but strong and steady. I never fear he's going to fall except when he first gets up, he can falter and go back into the chair but usually he catches himself and gets going fine with his walker.
I am so puzzled by what's going on with him, and I don't know where to turn. What do you do when the specialist is puzzled too?

By anidaholady On 2011.06.15 23:37
Wow - lots of unanswered questions there. Did he improve in the beginning after starting the Carbidopa-Levodopa?

Is there another neurologist you could see for second opinion? or a Movement Disorders clinic?

Not sure about the calm before the storm, as you said he has been getting better since September. Maybe he's coming out of the fog induced by the "other med" as he has tapered off it. In any case, it sounds like good news!

By parkinit On 2011.06.16 06:02
Someone put on here about getting a second opinion. I would agree with a second or even third. My spouse immediately became MUCH better with carbidopa levadopa and if this doesn't help with symptoms (especially at the early onset of the Disease), then I would certainly investigate other possibilities.

Good luck to you.

By susger8 On 2011.06.16 08:05
When you say he had "familial tremors," do you mean benign essential tremor? That is in no way related to PD and PD meds don't work on ET.

I have ET. It is normally not hard to tell the tremors from PD. With ET your tremor happens when you are using your hands, and goes away when your hands are at rest. (They also go away after you have an alcoholic drink!) With PD the tremor happens when your hands are at rest.

If he has ET, I would have to ask what idiot put him on PD meds.


By Lacy On 2011.06.16 12:42
Mirapex....that is the name of the "other med" I couldn't think of!! Know it like my own name but it totally escaped my brain the other day!! He is down to just one pill a day now, don't know the dosage of it though (I'm at work).
I know the tremors are not Parkinson related. His hands tremble only when he uses them, and then not always. His dad had them and we all cringed when he'd come around and pour us a cup of coffee. The saucer shook, the cup rattled, and the coffee pot wobbled!!! But that was his job and he was determined to do it.
At this point I'm just going to wait it out until his next neuro appointment and then ask some hard questions. If he can't give me answers, I want him to give me a referral for another opinion (insurance won't pay if without a referral).

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