Do other people feel that PD is misunderstood?

[Court]

I mentioned this earlier and my opinion was reinforced a couple of days ago when talking to a lady of 80 who was telling me about her friend with MS.

When I told her that I had PD she said "I can't see your tremor". My meds had not worn off. When I told her about other symptoms associated with PD she did not believe me. I also told her that a close relative of mine had recently died from PD she could not understand why she thought PD was only a tremor and had not realised the seriousness of this disease.

I am sharing this because so many people think this. I wish there was a way to let people know it certainly is not just a tremor.

[shasha]

IN MY CASE IT ISNT EVEN A TREMOR. I HAVE NEVER HAD ONE - BUT I DO SUFFER WITH THE INABILITY TO BE ABLE TO WALK AND PAIN AND STIFFNESS IN MY LEGS, ARMS AND FEET - MY NEURO TOLD ME THAT IT IS WORSE TO HAVE THE TYPE WITHOUT TREMOR - I DONT KNOW ABOUT THAT AS PD IS SUCH AN INDIVIDUAL DISEASE IS IT NOT?

[shasha]

PS I WAS DIAGNOSED WITH PD IN JAN 2010 WHEN I WAS STILL ABLE TO WALK OVER A KILOMETER AND STAND TO COOK AND PREPARE A MEAL ,....

[Court]

Yes, PD is such an individual disease. My Consultant says no two cases are the same so it stands to reason that what works for one person may not work for another. We all have to find a way to cope as well as we can with whatever life deals us. I just take one day at a time and am grateful for the better days. Just wish I had fulfilled all my dreams while I had the chance. However, I give thanks for my family and know that there are people worse off than I am. Take care.

[shasha in reply to Court]

you are so right - i too am so grateful that i have such a supportive family - and have read so much on these pages from pwp who dont have the great help and love that i have -

[Beachdog]

Pre-PD diagnosis, I too believed the key symptom was a tremor. So I ignored my limp, my diminished arm swing, my stiff neck, and left hand typing problems. Must be arthritis or carpal tunnel or something. But no tremor so PD wasn't even on the radar until my PCP said, "I think you may have PD".

Maybe with the internet and all the blogging etc, more people will get the idea.

[christinemc in reply to Beachdog]

Your pre diagnosis symptoms were the same as mine! I was told it was arthritis, then maybe a brain tumour, before I was diagnosed! I now still only have a slight tremor, noticeably when tired or stressed.Telling people I have PD is often met with sceptisism

[Dennis in reply to christinemc]

So true! I have faced that. Thanks for sharing.

[hilarypeta]

i think labels can be quite dangerous- over 30 per cent of pd patients bodies when they die show they never had it! - the nervous system is complex and some drs are ready to give labels easily-case solved mentality!

[Moderator_1 in reply to hilarypeta]

Hi Hilarypeta

I believe you are correct that there is misdiagnosis of PD but I wonder where you got that figure - about 1/3. I would be interested in any reference you have. Hopefully misdiagnosis will be decreasing with improved imaging techniques.

[Court in reply to Moderator_1]

I am not questioning the fact that I have PD but have never had any tests to confirm this. Would be interested to know more about imaging techniques as I have never been offered anything like this. Maybe I would not be a suitable candidate as my main problem is a tremor on my right side - both arm and leg,

[Dennis in reply to hilarypeta]

wow...that i sure did not know. after several neurologist Mayo was forceful it is PD...local neurologist said it is not PD...Dennis

[Maria29]

I often get the comment: "But, you don't look like you have PD" That's because my meds are working, for now. It is interesting to find out how little is known about the other symptoms of PD.

Maria

[Court in reply to Maria29]

Your comment describes exactly what I was trying to say. I did not mean to say that PD is more serious that other illnesses, but it is as serious and because of its many facets, can be difficult to diagnose and treat. People can be misdiagnosed, as I was, and then various meds have to be tried before the right one is found. Great until this one stops working - here we go again. We are very lucky that so many different meds are available and new ones are coming on the market all the time. Lets hope a 'cure' is just round the corner.

[hilarypeta]

I hope so-does anyone feel like a mild electric current is there in their arm/leg all the time? mixed symptoms confuse me -how can they give just one label pd? everyone seems to be totally different..in three years the only twitches I get is in 3 fingers where a nodule in the palm of my hand was::they said dupetryns but no changes..

[ddmagee1]

PD, the name, is misleading. Actually, Parkinson's Disease is a neuro-degenerative disease, where some neurons no longer function in certain areas of the brain, such as the substantia nigra. There are several other neuro-degenerative diseases of the brain ( that affect motor control and automatic control within the brain). All neuro-degenerative disorders are serious ailments ( PD, ALS, MSA-some examples). Some, with PD, are very lucky, and the neuro-degeneration doesn't advance rapidly and others, like myself, it seems to be advancing more rapidly, causing difficulty with walking, rigidity, swallowing, tremors, constipation, peripheral neuropathy, etc. I believe it all depends upon the extent and progression of neuro-degeneration within each person, afflicted with PD. I know some people who have said they know people with PD who are just mildly affected, after 20-25 years. Some theories are that there are different types of PD. Stages of PD are listed, but I don't know if the medical research community has all the answers as to why some people are afflicted more than others etc. I don't think, in the case of PD, that all cases can be put in the same category. The neuro-degeneration presents itself differently for each person afflicted with this disorder.

[Astra7]

I read somewhere that 40% of pre treatment PD people were incorrectly diagnosed. However once you start responding to the treatment the diagnosis is far more accurate. Sorry I don't have the source.

[ddmagee1 in reply to Astra7]

Several Neurology journals state that treatment with levodopa is diagnostic, if certain symptoms improve ( such as tremors ). My neurologist diagnosed me with PD, after treatment with Sinemet (Carda/Levodopa), improved symptoms, such as resting tremor, rigidity, and gait problems.

[Grasss1973]

Not only most lay people, but most non-neurologist physicians are completely unaware of the whole panoply of symptoms that accompany this disease ! And if you don't have tremor dominant disease, there's a good chance that there will be a delay in diagnosis because of the medical communities' lack of knowledge about this variation of disease presentation.