Diagnoses , vis a vis ET

[Pezo]

OK , I was dx with PD about a week ago , I am in shock a bit as I only mentioned my hand tremor to the doctor as I was seeing him for something else ..it wasnt really aan issue .... he sent me to a neurologist who confirmed his suspicion that it was PD , however , he has wrote in the DX (possible Parkinsons tremor ) and put me on Sinmet 25/100 3x daily ... what I cant seem to work out is this , most of the literature surrounding PD states that a resting tremor is the definition changer between ET and PD .?.. I do not have resting tremor , rather it fluctuates when moving my body strenuously.. I dont have any other of the classic symptoms ... I feel like I am losing my mind at times trying to figure it all out .....I mean , if there is no defining clinical definition , how many people get misdiagnosed etc ?

[Henry1244]

Hi pezo you are in almost an identical position to myself. I went to the hospital when my back gave up on me whist at work. The junior doctor there god bless him was so switched on that he noticed a tremor in my left hand and advised me to see my GP I did and he missed it initially saying I had probably strained the hand working. The symptoms were then as follows: heaviness and tiredness in the left arm when driving on night duties. I took to resting my arm on my knee rather than holding the steering wheel loss of fine motor skills in that hand.

I had been eating very hot and strong tasting foods not realising that I was loosing my taste buds and sense of smell.

My specialist that I was seeing with my back sent me to a neurologist and the rest is history that was 2013 and I was a fit healthy 48 year old.

I was put on Sinemet plus immediately and in fairness pd being the individualistic designer disease that it is we are still playing with the meds. It's an ongoing business dealing with each new problem as it arrives. It's not the end of the world, yes it's a pain excuse the pun but I'm retired now and I'm loving life. I'm not really restricted by anything if I choose to relax all day I do. If I want to exercise or ride my motorcycle I do. I too was in shock never new anything about pd. I'm now learning on the job so to speak, keep your spirits up and try and stay positive,we are close to a cure.

I wish you all the best , Henry.

[Pezo in reply to Henry1244]

thanks Henry , thats a very reassuring message ,and I sincerely hope we are close to a cure ..my specialist said there were new things being discovered all the time .... but I havnrt had any other symptoms , like losing smell or balance issues . I just shake in my left hand with exercise and adrenaline.

[whack-a-mole in reply to Pezo]

And that's what makes it a dubious diagnosis. With PD, the tremor occurs primarily when at rest, in your case it seems to be the reverse... consistent with ET.

[ryanJames1]

I wouldn't be taking any meds that have the possibility of worse side effects than an occasional tremor?

[MacDoodle]

Hi Peso.

You need a second opinion. I think trust your gut feelings. Even if it turns out to be PD it's very early to start on meds like sinemet. Time is on your side. There's lots of natural ways to slow PD including exercise. Eventually meds stop being effective so higher doses are required. its your body and your life. You get to choose.

I definitely have PD. At diagnosis I showed muscle rigidity in my left arm and hand, reduced ability to write with my dominant right hand. An unsteady gait, increased saliva, and depression at 45. So I sincerely hope you don't have Parkinsons.

If you do : Exercise that involves using your brain and reflexes are incredibly important. Dance, tai chi, hill walking, outdoor cycling. Repetitive training in gyms are less effective because you need to feel mentally and emotionally as well as physically challenged. You need feel alive to get well.

Go well buddy.

[glenandgerry in reply to MacDoodle]

Such wise words MacDoodle and good advice too

[MacDoodle in reply to glenandgerry]

Thanks glenandgerry, perhaps the only good thing about Parkinsons is that I've have had to learn somethings even if it is the hard way !

[Pezo]

yeah , whether I do or dont (I dont think so) , I would like to say communities like this are where you see the best in human nature ... you see people are not just a statistic of a disease , but that life goes on , however challenging that may be , and to me that is incredibly reassuring ... when PD is first mentioned , you inevitably think the worse , its only after talking to people that actually have the disease that you realise it doesnt necessarily mean instant doom .....

Like you Mcdoodle I am still young , I wont take any more of the meds once I rule it out in mu own head , which is going well ... I already have one chronic disease , so I know what a swamp of depression can overtake us when first diagnosed ... this seems worse with PD (or even the thought of it) as one begins to imagine things and has a hard time discerning reality ... I am beginning to settle down now and think (as said) even if I do have it its not the end of the world .... yet

[vivalavida]

Don't take meds yet

Wait until you need them

[Jeansm]

Hi Pezo, I went to my GP initially with anxiety issues but he noticed my very slight tremor that I had had on one side for years. He referred me to a neurologist who said my tremor was more of an essential tremor but then I also presented with some classic PD symptoms that I was either unaware of eg no right arm swing, and some that had troubled me for years but had been misdiagnosed eg rigidity and gait issues. She suggested that I try Sinemet, but on half the dose you've been prescribed 3 times a day. Her theory was that if there was no response to the drug her dx might not be PD. I was in denial and opted for a DatScan. It showed almost complete dopamine depletion on my left side. I still struggled with the idea of taking drugs and put it off for 6 months. To cut a long story short I started Sinemet and felt like a new person, totally re-energised, and with no adverse side effects. But after 5 months the effect was not so great and I was encouraged to increase to Sinamet 25/100 x 3 per day (which I understand is generally the standard starting dose). Once again I hesitated, but bit the bullet and now feel great. In fact I feel better than I have in ten years. So my advice would be that you have nothing to lose by trying the drug. If there is no benefit you can withdraw. I must add that I also increased my exercise from 2 hours Pilates per week to this plus one hour of NIA and one hour of gym (strengthening and boxing). Can't forget the value of exercise. Good luck and I hope you find something that works for you.

[Pezo in reply to Jeansm]

yeah , its so difficult to disentangle the two , great advice , and pretty much how I see it r.e the pills

[JohnPepper]

Hi Pezo. I have a tremor when I try to do up my shoe laces or button up my shirt or bring food to my mouth. Unfortunately, there is no fixed diagnosis for Parkinson's.

First let me tell you, there is no medication on the market that can change the progression of Pd. So, if you do have Pd, you are not going to get better with Sinemet. If your tremor stops for a while, after you take the Sinemet then the chances are that you do have Pd.

Let me tell you my story:

I was diagnosed with Pd in 1992 and took Pd medication for 10 years. I have been able to stay medication-free since 2002, when I stopped taking any Pd medication.

In 1994, my neurologist changed my medication from Sinemet and Symmetrel to Eldepryl (Selegiline), which is an MAO-b inhibitor. Also in that year, I stopped going to the gym for 90 minutes a day and started doing ‘Fast Walking’ for one hour, three times a week. I had already given up my job, the day I was diagnosed. That got rid of a lot of harmful stress, which is not good for Pd, and I started doing brain exercises and developed a healthy positive attitude towards the management of my Pd.

By 1998, nobody would have been able to see that I still had Pd.

I have lived a 'normal' life, since 2002, even though I still have Pd. I am now 82 years old in 2016

I wrote a book about my experience in 2003, which is available on my website

reverseparkinsons.net

It is also available in digital version on Amazon at $3.99. Don't be tempted to buy the so-called second hand books at a highly inflated price. My printed book will soon be available on Amazon as well.

[GillRob4]

I was exactly the same only had a tremor when I was using my arm and not when testing. DX with same medication and tremor has stopped except if I forget to take meds on time. This proved to me that I do have of. I am a year on and feel great most of the time. It took a while to accept it but now I forget about it most of the time and just get on with my life. Take care and I am happy to share my experiences if you need support.🙂

[BillDavid]

Perspective

The majority of PPD patients have as their principal some kind of gait disorder. This my experience, I was diagnosed in 2004.. Others , a smaller number have some kind of major resting tremor as majon symptom.. In addition I have a few minor tremors, such as a jaw tremor and tremor in left foot. These are definitely resting. Move the muscles in the area or tremor, and it goes away. For example, I chew gum, my jaw tremor goes away. I was diagnosed on the basis of an active symptom, I had no left arm swing when walking. You describe a chemical diagnosis. I have read about this, although have not experienced it.

However I do take senemet. If your test dose was 3 tablets, they used a "hammer" om you. I have taken it for years and am only up to 4 and one half. If your non rest muscle movement, knocks dow the tremors, I would consider that a signal. I imagine the 3

sinemet test would not offered much discrination. my take

BillDavid

[Pezo]

from what I can gather ...its a crap shoot , the diagnoses itself is somewhat subjective , and the only discrimination seems to be the difference between , action and resting tremors ... I only have tremor when I walk/ move(sometimes) / and in 'social ' situations .... but I cant figure whether I have resting or action tremor because the hand tremors in relation to what the rest of my body is doing... so god knows really

[BUZZ1397]

Didn't you get on this trip following a back injury? Is it possible you have impingement of a nerve? Did your neurologist perform a test of your nerve functions in the effected arm/hand? Oh, that was Henry. Excuse my thought but still not a bad idea to test that the nerve is conducting normal.

[jeeves19]

So do or don’t you have Parkinson’s 5 years on?

[Pezo in reply to jeeves19]

Unfortunately (for me) , there is something wrong with me , I guess it must be PD , my jaw shakes now quite often on top ... but the meds dont seem to do much but I take them anyway .. but i havnt seen a specialist since the last post , and I am being assessed for DBS in February ...but generally I am still ok

[Pezo]

so .... yes I probably do have it 5 years on , I now have jaw tremors frequently ... but smell and taste ok , walking ok , and underneath my shaky facade I feel , well ? ok ... but the more experienced people who initially replied to this thread were right ......... this is a crapshoot disease that effects us all slightly differently ....... and 5 years on , still no 'disease halting' meds .......... yet

[chartist in reply to Pezo]

If I understand you correctly, you are at least 5 years in with no definitive diagnosis and your only symptom is tremor, including your jaw. Meds are not helping. Sounds like ET, not PD?

Art

[jeeves19]

Hmmmm….. sounds an interesting one. Symptoms seem mild 5 years in, but no relief from the drugs. Never really come across this before. Like you I thought that it’d be nailed byv5 years but they still strike me as being largely clueless. Where’s all the money gone from charity activities and donations from billionaires? 🤔

[Despe in reply to jeeves19]

That's the reason I am never interested in "Cure Breaking News" promised by countless trials!

[Pezo in reply to jeeves19]

Yeah , I saw an example of 'the research' recently on facebook group .... they were researching some theory that people with PD are 'dominated' by their partners ... for a start its complete bs , but yet these scientists thought it was a worthwhile avenue to explore .... , it seems very ad hoc , but all we can do is hope

[kevowpd in reply to jeeves19]

"Where’s all the money gone from charity activities and donations from billionaires? "

It has gone into building the accumulated knowledge we have now, which is an awful lot more than in the year 2000, even.

[jeeves19]

Wow. How far out is that!

[ParkyVee]

Hi Pezo

Back in 2015 I had several symptoms of PD, but nobody realized it. My primary care provider tried to figure out what was going on with me, but we never came up with anything concrete. I was already being treated for restless leg syndrome with mirapex, a Parkinson’s drug, and the restless legs went from my feet to my neck with weird movement in my shoulders and neck and arms which I now know is dystonia. About three years ago I was diagnosed with ET, as my left hand had a resting tremor. About six months ago, I noticed that my gate has been affected, my legs are stiff. I feel like I have Charlie horses in the muscles. I have the shuffling gait, the slow movement, an increase in tremors all on my left side and feel like my body is vibrating on the inside, along with other symptoms of PD such as drooling, constipation, loss of smell, insomnia, anxiety, and depression, so I went back to the neurologist and he did a skin biopsy about a week ago, which is supposed to be as close as you can get to a definitive diagnosis because it will show folded proteins (I can’t remember the name of them right now) if you have PD. I will be getting the results of the skin biopsy on the 27th of this month, but I already know that it’s PD because it has advanced and I have most of the symptoms and now the tremors are starting on the right side. You can have motion tremors With PD, not just resting tremors. I have been reading everything I can find about PD over the last six months. I think my PD may have started as early as 2007 when I had swallowing issues but they could not find a cause for it after extensive testing. I’m also afraid that I’ve already used up my honeymoon phase before I even knew what was going on, because now I seem to be getting progressively worse. I’ve still not been on any medication for it other than mirapex, which was prescribed for the RLS. I’m not looking forward to trying the medication‘s that they have for PD but I will try them as it will help Reduce the motor symptoms. I am glad that I had the skin biopsy done so that I will know for sure, and they can start medication as needed. From what I have read, PD is like snowflakes. No two people have the same symptoms and it does not affect everybody the same way. I feel that a second opinion is always a good idea with something serious like PD, just in case they got it wrong the first time. Just my two cents… 🙂