DO YOU REALLY HAVE PD?: PD IS DIAGNOSED BY... - Cure Parkinson's

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DO YOU REALLY HAVE PD?

MyownPOV profile image
MyownPOV

PD IS DIAGNOSED BY SYMPTOMS. MOST PEOPLES SYMPTOMS VARY. DID YOU EVER DOUBT YOU REALLY HAVE THIS MYSTERIOUS DISEASE CALLED PARKINSONS?

I KNOW I HAVE MY DOUBTS.

83 Replies

I used to have doubts as I don't yet have tremors after 8 years since diagnosis. But if I haven't taken my medication for any reason my legs feel like lead and my handwriting becomes unreadable-so I guess I do have it. About 2 hours after taking the medication my legs feel normal and I can write quite quickly and it's large and neat. So I suppose that answers my doubts....

All pwp diagnosed with iPd tend to question their diagnosis and in London we get many people coming to us for a second opinion. If in doubt ask for a DAT Scan if your service is in the uk and they can arrange one. This will give you a pretty accurate defined diagnosis

maryalice profile image
maryalice in reply to isis6361

What is a DAT Scan?

The hospital inject you with radio active material and then four hours later you have a scan. My scanner was two plates about 12” square going over my head from side to side. Nothing like an mri scanner. Apparently the result is definitive. If you have to have one, it is nothing to worry about. I have been diagnosed since 2012,and am on simenet, rotigotine patches as resagiline. But I have also had a consultation with Dr. Constantini in and am on cbd oil and fit B1 (large dose), look him up, he has made a world of difference to me. You can almost not tell I have pd, and I am sleeping better, and have way more energy. Good luck

Do you have tremors?

Hidden profile image
Hidden in reply to Erniediaz1018

Ernie,

Berylhorsey1 used to have tremors, but not any more! It is posted in the "who is taking thiamine thread". I cut and pasted it there from a previous post by Berylhorsey1.

Art

Erniediaz1018 profile image
Erniediaz1018 in reply to Hidden

Thank you, Art.

What type of CBD do you use and where to get it?

Update . I have now had another dat scan as part of a trial at kings. Still painless, but the scanner was more like an mri scanner. I am also taking one magnesium tablet, and am sleeping at least 6/7 hours. Fab.

sleddog profile image
sleddog in reply to isis6361

That’s what I finally had to make sure it was PD the results sadly to say was PD. I was devastated but had to put on a strong face for my family. Take Carbidopa/ levadopa and Carbidopa and Zofran and my 1/2 Vicodin every 5 hours, and seem to have better days than bad. But not every ones body is the same.

Tiger101 profile image
Tiger101 in reply to sleddog

Hi sleddog. My husband has been on Rytary. The movement disorder specialist slightly increasing it since November 2017. Now he is on 8 a day. 2 @7 a.m 2@ 1:pm 2@ 7p.m. and 2@ 11:00 pm. He has terrible anxiety. I keep trying to get the doc to add something for anxiety but he has not yet. He just does not seem to make any difference with the meds increase and I'm wondering if it would help them to treat his anxiety. So confused.

5-htp for anxiety and depression. Might make Rytary work better.

Darcy3 profile image
Darcy3 in reply to Tiger101

I am Rytary and have anxiety. My doctor prescribed Wellbutrin and Paxil. I have only been taking it 3 days so I cannot make a judgement of whether it is helping. Truthfully, just knowing I am taking something to hopefully help is a positive fib and I fell I am being proactive.

yes i doubted i had PD when none of the many and varied meds i was given over nearly a 3 year period , had any effect whatsoever- and so it turned OUT TO BE PSP - OH HOW I WISH IT WAS PD

grandmasanta profile image
grandmasanta in reply to shasha

What does the initials PSP stand for?

shasha profile image
shasha in reply to grandmasanta

PROGRESSIVE SUPRANUCLEAR PALSY - YOU CAN GOOGLE IT AND FIND OUT MORE

Tiger101 profile image
Tiger101 in reply to shasha

My husband does not seem to be responding to the meds either. He did have a CTScan and it said positive for parkinsonism, Would this include possible PSP you think? I sure hope not.

JBOVERT profile image
JBOVERT in reply to shasha

HI SO YOU HAD A PET SCAN? this is the scan that my neuro said was "the" scanto determine what you have and so now one of them says yes to psp But the other one says vehemently that i have msa....so there ya go so I think that I have msa...but when you speak with people they seem to believe that they are all "parkinsonisms"

What are your symptoms?

I too am not tremor dominate and questioned the accuracy of the diagnosis. I had a DAT scan 2 years ago confirming PD.

I ask my self that question every day.My symptoms don"t seem as bad as other i know.At every doctor visit I ask my neuro. Unfortunately, she always answers the same way. Yes!.

9 yrs after dx I was still not truly certain until I had just about every test available recently as part of a clinical trial. My head knew I had it but there must have been a tiny shred of heart that felt I might not. I don't know why as the diagnosis was a great relief at the time. It gave me something to work with (or against), to concentrate research & treatments & a label around which to explain PD to others. Uncertainty is a key trigger for stress, the silent killer. Better to know what you are up against - for me anyway.

No I didn't but it took six long hard years to diagnose me and boy did I shake!!!!

I think we all doubt it at times, sometimes I feel to good to believe it, but when I think back, I know I do. The meds work, I they didn't I would never doubt it. And please stop shouting, we have PD, can still read ok.

Moodyblue profile image
Moodyblue in reply to olpilot

Some of us do have difficulty reading off the screen. I have two friends - one with PD and the other with PSP - that I chat with online and whose vision is impaired; we always type in upper case which both find much easier. The sooner we ignore the shouting/upper case alliance the better in my view - does it REALLY matter?

shasha profile image
shasha in reply to Moodyblue

thanks moody blue for the sticking up for ius who cannot read too well

i know i am writing in lower case now but some days i just have to do caps lock ...

Net4Biz profile image
Net4Biz in reply to Moodyblue

What is PSP?

Moodyblue profile image
Moodyblue in reply to Net4Biz

Progressive Supranuclear Palsy - often treated as PD because of similar symptoms, but a completely different cause. Hopefully, dx in future will be quicker now that we have the DaT scan for PD; there is no scan for PSP.

If there is no scan for PSP how is it diagnosed as not being PD if symptoms same/v similar/identical?

Anid profile image
Anid in reply to Moodyblue

Hi Moodyblue, I am so glad you brought this up. I do think it does not really matter. Regards

shasha profile image
shasha in reply to olpilot

WELL I HAVE PSP AND FIND THAT MY SIGHT IS NOT TOO GOOD - SO THAT IS WHY I SHOUT !!

Anid profile image
Anid in reply to shasha

Shasha, you are welcome to shout. Who cares as long as you are active on this site. Regards

shasha profile image
shasha in reply to Anid

THANK YOU ANID I DONT DO IT FOR EFFECT THAT IS FOR SURE !!!

marion11005 profile image
marion11005 in reply to shasha

LOL!

Moodyblue profile image
Moodyblue in reply to Anid

SHOUTING IS GREAT, IT MEANS I CAN TURN OFF MY HEARING AID !

marilw profile image
marilw in reply to Moodyblue

Often humor is the best medicine .

marilw profile image
marilw in reply to Moodyblue

Thanks for the LAUGH 😄

windwsprer profile image
windwsprer in reply to Anid

DITTO

Mijmijkey74 profile image
Mijmijkey74 in reply to shasha

You're not shouting, just typing big without nasty words which then if there were nasty words would make it appear you to be shouting.

I think parkinsons is a loaded word like spastic..it should be modernised into movement disorder because we all have varying symptoms,..some weve had all our lives. What neurologists do not realise is that they create the symptoms by their questions. I never had any problems except my weak frozen shoulder and 2 occasional shaky fingers for years. Since diagnosis its easy to find things, my friends with arthrittis etc of the same age, have similar symptoms! Its a disease that is connected with stress....giving someone a label is dangerous. I think. Neurologists need to be sensitve ,unfortunately most are not.

Hikoi profile image
Hikoi in reply to hilarypeta

If we called it movement disorder what about all the non motor symptoms of Parkinsons.?

Hikoi profile image
Hikoi in reply to Hikoi

This is a questionnaire about non movement symptoms of PD used in the UK by some specialists and nurses .

parkinsons.org.uk/PDF/nms_q...

RoyProp profile image
RoyProp in reply to Hikoi

new location

parkinsons.org.uk/content/n...

PARKINSONS IS ONE OF THOSE UMBRELLA TERMS, NOT UNLIKE SCHIZOPHRENIA.

Since I had brain damage in a car accident, my doctor has a question whether I have Parkinson's or whether my symptoms are the residual effects of brain damage. What is the difference? I thought Parkinson's itself is the residual effect of brain damage. What difference does it make? It is the bothersome symptoms which I mind. I have trouble walking, trouble with balance, can't get a full night's sleep, am constantly exhausted, have no energy , etc. I have had a MRI which shows brain damage, but without the injection of any dyes as in a DAT scan because I do not want to risk kidney damage. Brain damage is enough! As for me, I don't really care whether or not I have Parkinson's because I do not know what difference it would make.

PatV profile image
PatV in reply to ldq1997

does L-dopa help your symptoms? then it's probably PD. If you also have a TBI, you have my sympathy. My daughter has one following surgery to remove a tumor from brain stem. She's now on disability and I suspect a candidate for PD.

ldq1997 profile image
ldq1997 in reply to PatV

I have a traumatic brain Injury (TBI) but not from an external force. The impact of a car accident apparently caused my brain to "bounce around" inside my skull. There was no sign of external injury on my head, but I was paralyzed and unconscious. The doctors said there was no question but that brain injury was the cause. This was some 52 years ago and I thought I had recovered nicely except for poor coordination. However, lately the poor coordination has increased and developed into balance problems, walking problems, etc. etc. I have tried natural L-dopa in the form of mucuna bean extract and it definitely seems to help. I am going to talk to my doctor about trying selegiline, but I do not want to get into any of the heavy PD medications with horrendous side effects.

PatV profile image
PatV in reply to ldq1997

True, the longer you put off medicating the better. But the bad side effects of sinimet do not occur for years. I feel I added 8 useful years to my life, and only now see dyskinesias, etc. But I was horribly affected to dopamine agonists such as requip. so procede with caution regardless.. Wish you luck. My daughter developed many cognitive problems with her tbi, but she is starting to cope after 5 years. good luck to you

im sorry-itsjust that the word parkinsons has some bad connotations- i agree is an umbrella term-parkinsonism would be more accurate; i agree there are some non motor symtoms but those could also be from other body problems;

i think of it more as a body imbalance with adrenalin blocking dopamine production and the electricty in the body as having muddled up a bit-im trying to sort it out naturally- perhaps ill fail but i do not have half the symptoms those on medication have;

best to avoid radiology and other pollutants - i refusedthe dat scan which I read is dubious in its results anyway;

I WAS AT A DISCUSSION ABOUT PARKINSON'S,WHERE THE SPEAKER SAID PARKINSON'S MAY BE AS MANY AS 20 DIFFERENT DISORDERS, THE ONE COMMON THREAD IS THEY. ARE ALL TREATED WITH LEVADOPA. LEVADOPA ONLY TREATS PARKINSON'S. IT IS MUCH MORE THAN A MOVEMENT DISORDER, IN SOME THE NONMOVEMENT SYMPTOMS ARE MOER SEVERE. I WENT TO A "MOVEMENT SPECIALIST" SHE HAD ME TAKE THREE STEPS AND DAID I DIDN'T HAVE PD. NEVER DISCUSSED THE NON MOTOR SYMPTOMS AND FOCUSED ON DEPRESSION, A NON MOTOR SYMPTOMS. MORE EFCORT NEED TO BE PUT INTO NON MOTOR PARTS. BUT AS K UNDERSTAND IT IF IT IMPROVES WITH LEVADOPA OILYIT IS PARKINSON'S.

PatV profile image
PatV in reply to olpilot

that's my understanding as well, the dwindling levadopa producing/uptaking cells makes it PD. So if L-dopa helps the symptoms , it's PD ! So if there's many disorders, maybe we'll have to find MORE THAN ONE CURE !!!

I too took a long time to be diagnosed, just to young for PD...After the neurologist diagnosed me, the internist I had seen for 8 yrs. with all the various symptoms confirmed the diagnosis. It amazes me now because I had pretty remarkable tremors for almost two years prior to diagnosis. It was not until I could not walk without falling and had continuous tremors that notice was taken.

There are times when the meds work well that I let the thought creep in that I may not have PD, then I will have a fall or several days with bad tremors and reality sets back in...I have PD.

ddmagee1 profile image
ddmagee1 in reply to Susie01

I went through a similarly long period of symptoms and my family doctor saw that I had continuous tremors and several falls with injuries. After 8 years I went to another Dr. and was referred to a neurologist. Three doctors have now told me that I have PD. I am of the belief that PD is actually a number of disorders rolled into one name.

I have been treated for PD for 6 years by my family physician and a neurologist. My family physician did not originally diagnose my problems as PD, and always felt badly that he misdiagnosed. However, I have recently been examined at a major university medical center and a top-notch specialist who has now concluded that I DO NOT have PD or any movement disorder/. I didn't know whether to laugh or cry when he announced that to me! I am being referred to a psychiatrist ""(which is where my family physician originally sent me!!!!! At that time, I was diagnosed with severe anxiety disorder and panic attacks and have been treated as such since then as well as for PD). Has anyone else had the same experience? (Funny this question came up at this time..........but I am very happy it did!)

is it a relief to know that youre not sick youre just crazy :)

Anid profile image
Anid in reply to MyownPOV

LOL! Yes, I prefer to be crazy and not sick! PD is not the worst that can happen to one......although people think so. I have tremors, but after 5 y no other symptoms - little bit slower with my hands, but don't that come with age anyway! Lets be happy and live our lives to the fullest (I know, not always easy!)

RoyProp profile image
RoyProp in reply to Anid

@ Anid

Five years and no substantial additional symptoms must be a good sign. I read where a neurologist stated that at five years it is easier to predict what progression is in store

sue2000web profile image
sue2000web in reply to RoyProp

I also read in a booklet written by the pd association that if you start with a hand tremor your progression is slower. The doc says I am still in the honeymoon period after 8 years, is that because I started with a right hand tremor or is it Dr Constantini’s wonderful B1 protocol?

RoyProp profile image
RoyProp in reply to sue2000web

I have read, the honeymoon phase of five years starts when you begin Parkinson’s meds.

My Parkinson’s started 2012 with right hand finger twitch.

By five years I was disabled.

After B1 I was no longer disabled. You will have difficulty getting most neurologist recognizing, giving credit to thiamine hcl

Smittybear7 profile image
Smittybear7 in reply to RoyProp

How much b1 are you taking?

RoyProp profile image
RoyProp in reply to Smittybear7

Six a.m.- three grams

Nine a.m.- three grams

There is hope for a definitive diagnosis.

Dr. Adler of Mayo Clinic has developed a new test to confirm PD: mayoclinic.org/news2013-sct...

PatV profile image
PatV in reply to fwes

Good news!

My husband started out with severe vertigo in 2006, had to quit working because he ran heavy equipment and worked outdoors. He only had a slight tremor right hand that occurred from time to time. Now he got diagnosed in 2009 I believe after multiple trips to various kinds of doctors and even went to Emory University in Atlanta, that couldn't diagnose him at first. Finally his neurologist diagnosed him in 2009 believe it was. He now has a very bad situation with his PD. He has severe tremor in right arm, almost constant, vertigo issues, walking, swallowing, all kinds of problems. Has lost over 30 pounds without trying. He still tries to tell me he's going to go to work, and doesn't have PD. He takes meds 4 times a day.

Hi myownPOV

It took 29 years, after findinr that I could not throw a ball properly, before I was diagnosed with Pd. During those 29 years, constipation, insomnia, depression, essential tremor, speech problems, dribbling, panic attacks, mood swings, poor libido, exhaustion, bad balance, shuffling and many other symptoms appeared. Only when my GP noticed me shuffling, did he send me to the neurologist, who Dx Pd. Since then, I took only one med, SElegiline, for ten years. After 10 years, my condition had improved so much, nobody would ever have known that I had Pd. Strange enough, my neurologist, in the ninth year, put me onto sinamet, which did nothing for me. I took myself off it after three months. Many have said that if the sinamet did nothing for me, then I did not have Pd. However! At that time, I had been able to teach myself how to walk properly, bring food and drink to my mouth without dropping it, control my tremors, speak properly, and sing again among other improvements. What I want to know, is what other symptoms would sinamet have improved? If sinamet would have made me sleep better or improved the constipation or cordination, then I might believe that I do not still have Pd. Until then, I am sure that I still do, but it does not stiop me from living a good life, at 78 years of age. For more information look at: reverseparkinsons.net.

John

Hidden profile image
Hidden in reply to JohnPepper

Because he never did have PD ?

JohnPepper profile image
JohnPepper in reply to Hidden

Hi GymBag. I assume you are talking about me, when you said, "He". I don't know how you can make that statement. It might be your opinion and everybody has the right to express an opinion. You sound as if you are a doctor. If you are you should be ashamed of yourself for expressing that opinion without even examining me. If you are not a doctor, I forgive you.

John

Every day....every day I doubt my PD diagnosis, and that was 2 yrs ago. I'm still searching for a different answer.

I was Dx with PD the last day of January this year after having some bad falls. I have never

had tremors. Am taking Carbidopa-Levodopa, and I still doubt that I have PD.

I had my doubts if my husband really has PD. He accepted the dx right away from the Dr.s, after many years of being on the pd meds he built up an intolerance to them, so I told the Neuro Specialist if that is the case no more meds,. I made the decision to take him off of them due to the horrendous side affects, that was early Dec. of 2012, it changed his life dramatically of course it was a bit slow but the violence stopped immediately when he went off the Mirapex, then off the Sinamet, no more confusions, hallucinating, dizziness, head pressure, etc. yes he still has walking and other problems but thank goodness all those worst of the worst horrific side affects are no longer.

You mean he is not taking and meds now?

No he isn't, am thankful to say.

Hello MyownPOV

I naturally doubted the diagnosis, because I did not have a resting tremor! Almost all the Pd patients I had met, at that time, had a resting tremor. I had an essential tremor, and still have it now, when I am under stress. I wrote a book about all this and in it I list 37 symptoms, some of which are different manifestations of the same symptom. It is natural to doubt such a life-changing diagnosis.

In my case, I got a lot better, after ten years of taking Pd medication. So much so, I claimed in my book that nobody would ever know that I still have Pd. This means that most other people think that I do not have Pd, but I do still have many of the non-motor symptoms, which I am also able to control, to a lesser or greater extent, without the use of medication.

If I had not worked hard at trying to stave off the effects of Pd, and if I had not been positive about my ability to overcome some of the motor symptoms, I would not be in my current situation.

If you want to know more about my history, you can visit my website - reverseparkinsons.net. If this piece of information is not allowed in this reply, then you it can be removed.

John

A dat scan is a dopamine uptake scan and it shows the clinician the amount of dopamine loss in the substantial nigra. Any reduction confirms Parkinsonism which can be ipd CBd msa PSP dlbd PDD . Ipd usually shows unilateral depletion. The clinical picture with a positive dat confirms ipd .

I have been dx with ATYICAL PARKINSONISM SYNDROME. I am scared..do not know what to expect,,,currently I walk and move slowly,,,talk too low and too fast,,,can not read my own handwriting,,,,If I could move as fast as I can talk...life would be great!!

shasha profile image
shasha in reply to grandmasanta

LOOK IT UP ON GOOOGLE - ALSO PSP MSA AND CBD

A dat scan will give you the defined diagnosis of ipd

I have had RBD for 5 years and have also been told by my neurologist the next stage is a neurodegenerative disorder probably Parkinson's. However, I am trying to hold off that day. Cheers

I haven't been diagnosed (yet?) I saw a neurologist years ago when I had first symptoms (internal tremors, neck stiffness and spasms), but they said it was probably stress related. Since things have got worse - with internal tremors down my right side, more stiffness, some loss of expression, foot dragging - I've been back to see my GPs several times. They're still saying it's probably due to stress and anxiety!

I do have a lot of stress in my life as my mum has very advanced Parkinson's and many problems. And that is obviously very stressful as it's like I'm looking into my future. Ok, that's looking at it very negatively. But sometimes when I'm down I do think like that.

But because I've seen my mum's progression I am quite certain that I have PD too. The doctor is willing to refer me to another neurologist, but I think that's just to humour me. I probably will go to one at some point, but because I don't want to go on medications if I can help it, I'm not sure there's much point right now. (Also, part of my brain is in denial about it, and I like the small possibility of not having it. Even though I know it's very small!)

YES SOMETIMES I HAVE DOUBTS AS TO IF I REALLY HAVE PD. THEN I FREEZE AND AM SURE THAT I DO

I doubt it even more when my symptoms seem to go completely into remission. They can go away for a month or two, and then come back unexpectedly, stay for many months and then they may go away again. Does this happen to anybody else? Or did it happen to you at the beginning? I'm still not sure I have PD, but when I get my symptoms back it really seems that I do.

Yes I too wondered if I had pd. My last Neuro said he did not think I had pd. However I was getting worse with standing, barely walking and sudden feelings that I was going to fall. MRI showed nothing. DAT scan pd ones tell me is not always conclusive. Strangely enough that same doc did give me a prescription for c/l. It took me a few days to get the courage to even take my first dose. Incredibly enough I felt better right away. Three years later am not a fan of even taking an aspirin but am so thankful to not have feelings of falling, can walk much better, stand and get up easier from a chair. Sometimes I question do I have pd, but when I reflect on my worsening health before cl and now I will continue wi5h the meds. The side effects nausea etc not a fan, but also not a fan of falling and the side effects like broken bones. I feel like cl has given me a measure of my life back.

smoke a joint mind over matter work it!!

I have no doubt whatsoever!

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