What criteria was used to diagnose you had PD?

I am interested in knowing how people were diagnosed. I accept that I have PD but have only ever been given such tests as walking into a room, touching my finger to my nose etc. I have never been offered any neurological tests. My own GP and first Consultant discounted PD. The next Contultant said it was PD and I accept this. Does anyone else find that a couple of drinks stop the tremor? Has anyone had scans or similar? My tremor is there when I am still and also when my hand is active. It does respond to my meds, but not always.

I am not questioning that I have PD but would like some questions to put to my Consultant at my next appointment.

Sorry if this post is a bit rambling but I need answers to my questions to be sure that the treatment I am getting is the right one for me. I am sure we all want this for ourselves.

35 Replies

oldestnewest
  • My symptoms were a limp, a rigid non-swinging left arm, very stiff neck, and stiffness in my left hand.

    The neurologist (after being referred by the PCP) had me walk down the hall, pulled on my shoulders, raked a sharp stick across the bottom of my foot (I hate that!), smacked my knees, had my eyes follow his finger, turned my wrists, had me write a sentence, asked me the date, and had me do a hand movement test. Then I had and MRI and an X-Ray to be certain my ailments were caused by something else. Then he thought I "probably" have idiopathic PD but gave me some Azilect to see if I improved (which I did although I subsequently added C/L ER.

    I don't have a tremor but a few drinks sound pretty good (although I gave it up some years back).

  • Hi Court,

    A few Drinks help me, i was dx in nov last year , however my PD nurse told me i have prob had it for over 10years , i was beeing treated for a stroke for a few mnts till i was seen by a prof in Glasgow royal who specilises in PD, as far as the meds go i seam to be worse, iam on requip XL and they make me feel sick all the time , i Have right side tremor which gets pretty extream at times my left leg has now joind in this dance as has my head, i fall a lot and i carry a card to explain to pepole that iam not Drunk ( it is funny some times the way some snotty nose gits look down at you when you are shuffeling along shaking and swearing to your self),

    Regards

    Al

  • Oh, Just forgot i have had 3 scans , the last one was a dat scan , which confirmed PD,

    i also had all the walk write a sentence do this do that and the poking and proding < got a pissed of with that because every doc i seen doe the same tests

    Al

  • Hi. I had a pretty good resting tremor going by the time I saw a neurologist. I had also started writing all tiny (micrografia) which is another sign of PD. I did all the physical tasks the others have described, but got no scans. I did get a second opinion from a PD specialist before I accepted the dx. What convinced me, though, was that the meds made me feel much better.

    The role of alcohol is very interesting and I intend to post a question about it soon.

  • please don't think I drink on a regular basis. Which is not the case. I found a couple, no more. of drinks helped before my diagnosis so I decided to try it after a particularly bad day, when tremor did not ease all day. I left it until the evening and it helped.

  • I was being treated for what was thought to have been a stroke due to left side problems and migraines that were always in the top of my head on the right side. Was in and out of the hospital 4 times over 3 years for the stroke like symptoms that would make it seem like I was having a stroke. Was diagnosed with complicated migraines by Mayo Clinic, took 3 years for that diagnosis. Was put on all kinds of meds and ended up back in the hospital again and saw a little old neuro doctor that asked me if I had tried PD meds in the past? I said no and was like this guy is out of his frigging mind. He put me on Senimet and I was feeling better in no time. Was not able to follow up with him because he was retiring so I went back to the Mayo Clinic and saw my now movement disorder neuro. He was able to diagnose me after a a ton of tests with PSP. As for the pulling back on the shoulders test, when he finally diagnosed me, he video taped me for future record. Well, he pulled back on my shoulders to hard and WHAM, I feel right on top of him in the video. I'm a big guy at 6'2 220 and he is not as big as me and I was worried about falling on him and he says, "You won't fall". After all I had just been told and been through, that was one funny moment, we both still laugh about it.

  • Court this is a link to an information sheet on diagnosing Parkinsons.

    parkinsons.org.uk/pdf/FS48_...

  • Thank you so much for providing me with this information. None of this was ever explained to me and it provides very interesting reading. I will need to read it a couple of times before I see my Consultant. I feel my diagnosis is correct, but my husband doesn't agree. Will see if this converts him.

    Once again, many thanks. This site is a lifeline/

  • I, also, feel I was not given enough information when told I had PD.

    I went to 5 different neurologists, including the Mayo Clinic, because my husband would not believe that I have PD. I thought I did, but went along with him because I did not want PD.

    Three years later I was taken off of all meds [had too many side effects from them]. About 6 weeks after going off all meds, I couldn't walk. I felt so bad I wanted to just give up. We went to an emergency room in a small town. The Dr. gave me a prescription for meds and I felt better within the hour. This was the best prescription I've received.

    My husband then agreed I have PD.

  • DAng that is a great story. Thanks for sharing. THat video belongs onYouTube, dude.

  • One day my thumb started to twitch. It only twitched when my hands were completely at rest. Six months later my little finger started to twitch too. I started dropping things. One of my co workers waking behind me in the hall told me that they noticed that my left arm no longer swings when I walk. Then a few months later my left leg felt like I needed to run while I was at rest.

    This was my reality ten short years ago. I finally went to the Doctor and was told I had an Essential Tremor. After a year the diagnosis was changed to Parkinson's disease.

    No test for Parkinson's but I did have a CAT scan and MRI to rule out other causes. Diagnosis was made through progression of the disease and drug efficacy or failure and through the agility and walking tests noted by others.

    My Mother had Parkinson's so I think family history was used as well.

  • I am interested in your statement that both you and your mother had PD. As you are probably aware, much research is being done to determine what triggers the disease and whether it may be hereditary. They have determined that North and South Dakota have the highest incidence of PD in the USA, probably because of the use of pesticides and chemical fertilizers which "cause insult" to the brain when inhaled or otherwise contacted.

    My father was a North Dakota farmer. He was a widower, a stoic, hard working man who was too stuborn (and too poor) to go to a doctor while he could still walk. It was not until I was diagnosed with PD that we noticed that my dad, now dead, had shown most of the same symptoms which I now display. I also remember that I had stood side-by-side with him enhaling the same toxic formaldehyde fumes as we worked with seed grain for planting.

    If PD is, to any extent, hereditary, this would mean that both you and I may have grown up, with the propensity already established, to get the disease. I lost my sense of smell in the late 1970s. The loss of the sense of smell is recognized as the most frequent first symptom of Parkinsons. I am wondering if you had any similar warning.

  • Hi Ronn, My symptoms and progression are different than my Mom's (now deceased due to Kidney failure not PD) but I agree there is a propensity.

    I grew up in the central Illinois corn fields;de-tasseling corn every summer. I suspect that also is a factor. My mother never set foot in a field.

    See my blog on this site titled "Children of the Corn...".

    I have been very fortunate and still have my sense of smell as well as only having unilateral symptoms for 10 years now. My warning came when a co worker walking behind me said "Hey Jeanne, do you know your left arm doesn't swing when you walk?" I didn't realize it until she brought it to my attention.

  • Within months of having major foot surgery and shoulder replacement surgery in both shoulders, he had a slight shaking sometimes in his right arm, which I thought might be nerve damage. Because of this, they tested him for PD. They had him walk and he had a limp because of the foot surgery. The VA put him on Carbidopa/Levadopa and he ended up in the hospitol. They reduced the dosage, but he has never felt or acted better. In the 2 yrs. that he has been on those meds, he has gotten worse & worse and has lost 80lbs. I'm not convinced he has PD. But if he does, the meds are not helping at all. He's become paranoid, fearful and almost helpless. Tomorrow we have a Neurogist appt at a different VA so I am bringing all my concerns with me.

  • Please let us know how this turns out.

  • We had the Neurologist appt. today. He listened to us!! yeah! We are going to wean him off all Carbidopa/ Levedopa and will be done in 2 weeks. If this doesn't work, he will have to go back on them. But we have to try this and am praying this is his problem. The Neurologist said that taking these meds and not needing them, will give you the symptoms of PD. Will let you all know in 2 wks how this is working.

  • hi .after yrs of being sent from one place to another and waiting for neurology apt suffering with right side problems i was sure i had had a srroke dragging my leg tripping over the smallest thing no arm swing tiny unreadable writing cudnt stir things in saucepan or make stroking movements with my hand i my first apt with neurologist i was told by my symptoms that he was 99 percent sure it was pd and put me on stalivo and ordered a dat scan he said if stalivo helped that was a sign it was pd also as they replace dopamine . two mths later i had a dat scan and it showed loss of dopamine which proved 100percent i had pd , its the only scan shows dopamine area and its a nuclear injection . into the arm and 3 hrs later u get ur scan , i had an mri scan mths later but thats just routine , that will be 4 yrs ago this march im 52 now . .

  • Thank you to everyone who has responded to this question. It makes very interesting reading and there is a lot for me to take on board. Thank heavens for this site as only another person with PD can ubderstand the frustrations of this disease.

  • Took 3 years to diagnose and 3 neurologists. My symptom was a rigid left foot that would not walk in synch with my right. GP said I was just getting old (62!) or grief (my son had just died). First neurologist sent me for nerve tests MRI and X rays and was convinced I had post polio syndrome (even though I felt good after exercising). Sent me to PT for the pain in rigid adductor muscle. The PT physician noticed tendonitis and sent me to Neuro #2 who put me on sinemet. It started to make a difference. But he was not a parkinson's specialist. I prayed to find a decent PD specialist and found one. Yay! Going on 10 years now.

  • I went through the ofice tests plus mri blood work. Checked for stroke wsons disease. The stiff neck rifht side tremors in foot and right side rigidity. Start c/ l amd azilect and it all got better to about 90% changed to mirapex 4 times a day with azilect. I hate the nausea amd the sudden sleep( dvr helps though).

  • I was diagnosed in france by neurologues after 3 years of nodules and 3 fingers tremor on right hand. I had had frozen shoulder and thyroid meds.;I pased the finger to nose tests, stroking, reflexes. But I get so nervous seeing neurologist that I find it hard to be natural-walking around the room; twiddling wrists. I have noticed more saliva in mouth, water going down thhe wrong way when drinking sometimes, voice a bit more croaky; difficulty getting right foot into some shoes and tights, wakness of right arm muscle, some confusion of words sometimes -but could this be being over 65? I walk fast and more or lesss normally but coordination dancing not that good.;I am v left handed and h ave got lazy using my right hand since problem.

    Brain scan clear-they also thought it was a mini stroke;

    I think it may be neurological and not a trapped nerve from the shoulder but await further tests.

  • Just goes to show that everyone has different symptoms and why PD is so difficult to diagnose. I find that although I went line dancing for years I am worried about co-ordination and have not been for some time. Have never had scans or any tests so don't have any idea of the state of my brain. On reflection this could be a good thing. Take care.

  • hi

    i have PSP diagnosed in dec 2010 - ,many of ur symptoms such as falling fwds cannot swing arms hwen i march (cannpt marhc vin time any more) co ord goen and cannot swim ro play piano

    typign(!) v dyslexic as 1 hand stronger htan the other!!

    great difficylty putting rt earring in / shoes and socks

    speech got quieter and v garbled although in my brain it si fine

    i had a frozne shoulder some years ago

    had an mri scan as htought to be balance probs caused by inner ear problems (labyrinthitis( but ruled out)

    diangosis by seeign 2nd neurologist who carried out all the usual tests

    I mentioned my eyes were closign a lot . i am not blinking and as a result he diagnosd hte PSP (Google ti plz if you do not knwo wha tit is)

    myi downwar dgaze is affected too

    love jill

  • I have the same symptoms you had at diagnosis. Even confusion of words and I'm only 31! Maybe I should see my dr again. She said I'm too young to have PD and sent me on my way.

  • I was exposed to hazardous substances, in youth and in Korea, lost my sense of smell in mid 1970s, (frequently the first symptom of PD). Was diagnosed as a Parkie in September, 2010, based on right-hand tremors, difficulty formulating words, excess saliva and the "Parkinson's Mask". The neurologist backed up these symptoms with an extensive battery of "do this" physical tests which convinced her that it was PD, not "Essential Tremors". I have since justified her diagnosis by developing other symptoms such as the Parkinson's Shuffle, short term memory loss, muscle stiffness, slowed movements and lowered blood pressure. I am currently taking a dopamine agonist after experiencing mixed results with other medications.

    Good luck in your search for answers.................

  • Hi all, my symptoms surfaced within 1 month of having surgery on my right wrist for a tendon release in the fall of 2003 while living in central Illinois (Jerebet---where in Illinois are you----lived in Ottawa from 1993--2004, worked in Spring Valley) I returned to western NY in the spring of 2004, tremor in right hand, right-sided nek & shoulder pain. Went for a ortho consult and was referred to a neurologist who observed me walking, said my arm did not swing when I walked---I disagreed with his comment that PD was not hereditary as my maternal grandfather and his son had PD, my mother while never diagnosed had a terrible tremor and illegible handwriting, history of multiple falls and Lewy-body dementia. Within the last year I have learned that a niece of my maternal grandmother is dealing with PD. Since being diagnosed in 3/06 I have been on mirapex, then requip--------later changed to requip xl, sinement , fatique easily, sleep poorly, painful foot cramps, generalized pain but I am progressing slowly and as long as I take meds on time and pace myself my good days outnumber my bad. Gail

  • Hi Gail, I am originally from a community between Peoria and Hanna City, My last name is Doubet, which is synonymous with Illinois corn,Your experience sounds so much like mine. I agree there is a hereditary link as well. I hope you are having a good day.If you or any other PWPs want to friend me My account is under Jeanne R Doubet.

  • THERE IS NO ONE TEST TO DETERMINE PD.A SERIES OF TESTS CAN GIVE A WELL EDUCATED DIAGNOSIS-BUT 9 TIMES OUT 10,YOU WILL KNOW.TALK TO A NUMBER OF PEOPLE,WAKE YOUR FAMILY HISTORY INTO ACCOUNT-AS B4-YOU WILL KNOW.

  • My initial symptoms were a twitch in my right thumb then the whole hand, doctors first suggested a Isolated Rest Tremor (or Benign Essential Tremor) Doctor then suggested an MRI scan which showed nothing, I then had a DatScan (the one where radioactive isotopes are injected into your arm and work their way to area to be scanned) This showed low levels of dopamine activity on left side of my brain (99% accurate) and so I was diagnosed with PD in Oct 2011. As far as I`m aware there is no history of PD in my family.

    Hope this helps

    Andy

  • hi andy u are not long since u were diagnoised .how are u coping .? i too started with a twitch in right hand and i had a datscan , MY dad had parkinsons but he had passed away in 2000.... 8 yrs before my diagnoises .i thought it was only a shake but i found out its much much more .xx

  • Hiya, I`m coping well thankyou, facing life with a smile on my face :-) I`m living life as though nothing is wrong...how dare Parkinsons invade my life!!....I will repel all invaders!....well try my best at least lol :-) The initial shock of being diagnosed lasted for about half a day and then it was a case of "oh well this is what i`m facing, now i know what it is lets deal with it....business as usual" I found it worse when i didnt know what it was. Laughter is the best medicine...and PMA...Positive Mental Attitude

    Andy xx

  • Hi Andy

    I am going to show your post to my husband, who, after all the tests, scans etc., was diagnosed with PD He has no tremor but has other debilitating symptoms. He is on meds but they don't seem to be making any improvements. When I think about it he may well have been in the very early stages many years ago when he told family we had been to a wedding in a carrot instead of a CASTLE we all thought this was highly amusing, but looking back it was probably the start of PD. He has just turned 80, is quite depressed and taking anti depressants I just wish they had a prescription for PMA!!

    I feel he should stop driving but how can I tell him as he thinks he is fine to drive!

    Cheers

    Hazel

  • hi andy

    i agree

    the initialshock lasted only afew hours then i was googing and finding out about PSP ()my diagnosis)and parkinsons

    i suffereed from deprsssion for many many years but PMA is the best medicine which i seem to have in plenty now

    aged 65 but tryign to get something otu of each day

    i feel so much better knowing what i have ot deal with even though the prognosis is v poor and no meds to help

    keep smiling all!!

    love jill

  • what is a DAT scan...I was diagnoies in 2008 had 2 MRI's they show only certain stuff...I will ask my Dr.about this without this site I would'nt even know this....Thanks!!!

  • Hi

    I have taken the following information from a web site but to put it very basicly it shows the amount of Dopamine(chemical that carries instructions from the brain to the rest of the body) in your brain.

    • What is a DAT (Brain) scan?

    A DAT scan is a method of examining your brain to show conditions not seen on plain x-rays or

    MRI scans. It requires an injection of a small amount of radioactive scanning tracer, which is

    taken up by your brain. It takes approximately 3 to 4 hours for the injection to reach the brain,

    after which a scan will be taken. However you do not have to stay in the department during the

    3 to 4 hours.

    Hope this helps.

    Hazel

You may also like...