Parkinson's Movement
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New diagnosis

I was diagnosed with Parkinson's last year due to a DAT scan when they were actually looking for the cause of another physical issue that ended up having nothing to do with Parkinson's. I really had no reason to think I had Parkinson's before the scan. So I actually had a second, third, and eventually fourth opinions before I really believed it. The doctors all said they saw things I did that indicated Parkinson's and all said the reason they saw them was because they were trained professionals. However, they didn't agree with each other on what they saw, which just added to my skepticism. The one thing they seemed to agree on is just that I don't swing one of my arms much when I walk. So I'm 51 with no huge symptoms. But I went to the hospital recently with a nasty case of pneumonia. When they got me up to start walking around, my balance wasn't too hot. So they blamed it all on the Parkinson's. I may be in denial, but I want to blame it more on the pneumonia and laying around too long in a hospital bed. I guess I can't really argue when four doctors say I have Parkinson's, but I'm just wondering how others might have dealt with some of the more emotional factors with their diagnosis, especially if you don't really feel like you have it. Thanks.

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My symptoms started exactly like that. Reduced and eventually no arm swing, I would also occasionally stumble and bump into things. Your symptoms sound consistent with Parkinson’s to me. Also DAT scan is quite telling.

Sorry you’re going through this. It’s hard to believe at first. Even after several years for me I still have thoughts that this is all going to go away, only to realize that when the med wears off I am stiff and barely moving.

You’re really fortunate to have received the Dx early. This gives you more time to change your lifestyle towards slowing the progression.

For me it took about two years of misery. Going to doctors and no one knowing what the heck is wrong with me.

Just curious what did they do the DaT scan for if not Parkinson’s?

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Thanks. One thing I get from you and others is that the time between having serious problems and the time of diagnosis can be pretty awful. It sounds like I should be thanking God they discovered it before I even started asking questions. Weirdly, they discovered it because I went to Africa and got malaria. I recovered from the malaria while still in Africa, but had some weird things come up a few days after I came home...major foot swelling and pain and major back pain when in bed. They ended up diagnosing a weird form of arthritis that reacted to the malaria. But in the meantime, I was in the hospital, went to an infectious disease doc, and a neurologist. The neurologist mentioned Parkinson's because of the arm swing, and I went to do the DAT scan, but thought it was all over when the rheumatologist diagnosed reactive arthritis and gave me something that cured those symptoms instantly. Then a followup to the neurologist that told me the news. Thanks, again, for your reply.

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I think there’s relationship between inflammation caused by infectious disease and the onset of Parkinson’s. I was bitten by a tick and have Lyme’s disease with strong inflammatory response, which also lead to arthritis in my shoulder. Basically everything that increases inflammation in the brain can cause Parkinson’s. This can be an infectious disease, toxicity from meds or other toxins, or autoimmune reaction.

Did you have strong bouts of fever with the malaria?

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very interesting. I'm sure I had a fever. I was hot. But I was also near the equator in a coastal country with no a/c or electricity. So hard to know for sure. They did not take my temp. I just kind of slept it off.

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I totally agree. Was diagnosed in 2002 with Lyme disease (no apostrophe S, so it is not called Lyme's disease) and found to have a number of infections that often come along for the ride in the same infecting tick. Brain inflammation and head pressure feeling for years. I suspect that is what kicked off the PD. I have been collecting and posting any research I can find linking Lyme and it conifections (such as Bartonella, Babesia, Ehrlichea, Anaplasma, Protomyxzoa and others) with PD. I am not alone in my hypothesis. I have about 1000 articles up there now. Feel free to check my Lyme & PD blog at bobcowart.blogspot.com.

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Do you both recover your arm swing?

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No, the physical therapists are working with me to purposefully swing my arm, but it isn't coming naturally.

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My arm swing is fine with meds. Even a bit looser than I like sometimes.

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Too funny. Too loose is apparently not a problem with me yet! Jeansm also gave me some things to think about with respect to drugs. I've been very resistant but maybe should consider them more than I am.

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Jeansm’s account of the events is very similar to mine. Sinemet has brought me back to almost normal in terms of mobility in the left side, mood and energy. I deal with some diskenisia but really ok with it for now.

Also anxiety, panic attacks ets are somewhat not as dramatic

Glad you get good info here. It should help you with your next move. Good luck!

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Good to know. My only experience is 5 days on Azilect, which didn't go so well. But that was due to a drug interaction I wasn't aware of. We didn't discuss any other drugs. They referred to a first line of defense drug, then a second, then a third. Azilect was the first. Do you happen to know where Sinemet falls on that spectrum? Thanks!

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I am on Azilect and sinemet. Azilect is considered first step and for your mild symptoms might be good. Also is supposed to be neuro protective.

The groups are:

- agonists which stimulate the dopamine receptors, the idea is that the receiving end can transmit messages with less dopamine. An example is mirapax. Makes people a bit more compulsive

- dopamine intake inhibitors, which close off a dopamine recycling mechanism in the brain thus increasing concentration.Azilect is in this group

- dopamine replacement sinemet and various Carbon/Levodopa meds’ which add more dopamine , typically used with one or each of the above to increase impact of the dose.

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great summary. Thanks!

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yes, thanks for that. I was getting rusty on the categories.

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I didn't get much out of anything other than sinemet, which is supposed to be the last drug to use, because after you crank that up, there is no place else to go except maybe getting a DBS. However, the Ayurvedic medical tradition (Indian herbal treatments) Rx's Mucuna which is a precursor to dopamine, similar to L-dopa, but without the carbidopa to carry it across the BBB (blood braiin barrier). The good news for me is that my amt of sinemet has been almost identical for the last almost 10 years, which is to say since my diagnosis. My DAT was positive for PD a few years ago, supposedly confirming the diagnosis, but I still test positive for Lyme and some coinfections. My testing there used antibody tests as well as a Lyme (borrelia) culture test that does not produce false positives. So time will tell whether further treating the Lyme using IV antibiotics will decrease my Parkinsonism.

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When the Sinemet is 'on', my affected arm swings MORE than the other one. So, yes, as mishod said. Same for me.

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Hi I was the same! No arm swing,tremor,lots of muscle pain and stiffness.Had loads of tests.When I was finally diagnosed,after the initial shock I was glad I finally got diagnosed.

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That's one thing I get from these replies...getting a diagnosis before problems started was actually a good thing and something to be thankful for. Thanks!

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I was diagnosed by DAT scan 7 yrs ago. My symptoms a small tremor in my right leg. I started to find that I was having trouble turning over in bed. I have an unstable back due to disc problem so was putting it down to that.

Nothing prepares you for the news. My father at time had vascular parkinsons

He was 80yrs . Me 47 yrs. Went through lots of emotions but realised after a while that ťhings could be a lot worse. And that out of all neurological ďiseases this was one of the kindest.

Like you went for lots of second opinions even now I still think they may have it wrong.But what I have learnt is that no amount of worrying will make it go away, Have spent fortunes on alternative medicines ... do they work... to be honest they seem to but then I wonder how much is it to do with the mind belief that's it's working?

I have found exercise to be a good starting point and would urge you to start doing regular exercise as it does work and make you feel a whole lot better. Also try and stop worrying about things you can't change. Be proactive and start healing your mind and body I find that certain foods I eat also has effect on my symptoms.

Parkinsons is a one man journey because it is different in everybody and I think that is the most frustrating because what works for one does not for another. You have to find what works for you. There are amazing people on this site who all want to find answers and support each other and it so reassuring that sometimes you just need reassurance that you not going mad or what you are feeling at time is normal.

Wishing you all the best 😊

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Hi My wife was given a preliminary diagnosis of a Parkinsonism nearly 4 months ago and and been taking C/levodopa since then, had a brain scan, negative and a DAT scan a week ago, the results of which have reached her consultant who will be ringing Monday.

Up to the point of the diagnosis I knew that things were not right probably for the previous 9 months although the symptoms latterly seemed to have speeded up. She presents all the classic symptoms, loss of smell, low voice, very small writing, stiffness, hunched walking, excess saliva, rem disorder, cogwheeling, constipation, bladder problems I could go on! But I hate treating her like a laboratory experiment. This was all before being prescribed C/levodopa. Has the three times a day dose helped to manage the symptoms? From the outside probably not as the side effects, nausea etc make her quality of life difficult, taking anti nausea pills seem to worsen not alleviate these feelings. Persevering with the pills as appointments with consultant only ever six months maybe a different pill will give a better result. The medication regime 3 times a day at specific times and eating a main meal at lunchtime to avoid digestion problems at night is quite restricting for her.

Fortunately we have a dog so exercise is not a problem but not able to walk the distances she used to as we read exercise is really important that's great.

As a carer I realise she is concerned about the future as I am and probably like most of you is still in some sort of denial. So it would be helpful to get a definitive diagnosis, which from previous posts it seems Doctors are for some reason reluctant to give and sometimes take a year or two, so that she can move on.

As you all realise it is difficult to talk to other people about how you feel, life is so fast these days but these forums are a great way to read about other people's experiences and feel that we are not alone. Sorry about wittering on!!!

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Thanks, ashdrive! I wish your wife the best of results Monday. It sounds like maybe you already strongly believe she has Parkinson's, so maybe a firm diagnosis will be a good thing. I appreciate her concern for her career. I've been on disability since July, only partly due to Parkinson's, and have been thinking a lot about how long I want to keep working. I'm 51 and have always said I'd like to retire at 55. I haven't started drugs, so I'm hopeful I can keep working at least that long. But the cost of health care could make 55 unrealistic, too. We'll see. Again, my thoughts and prayers are with you.

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I find it very helpful to do what works for me with the meds. I take sinemet, Carbidopa levodopa, but I only start the day with half a pill. And take the other half maybe an hour or so later. This helps alleviate the nausea.

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Re the nausea with the senimet. I have found that drinking a bottle of water before taking the senimet helps prevent the nausea.

Also not eating a full meal before taking the dose helps too.

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good to know. nausea has been a big problem recently. anything to help that is good. thanks, enidah!

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Hi it sounds like your wife is very much as I was when I first took my medication The nausea was terrible and it seemed that the cure was worse than the illness. I am 3 years on now and I would be lying if I said I didn’t still get side effects but the nausea has gone it seemed to settle after about 6 months. My handwriting is back to normal and I can swing both arms when walking but I put that down to my own hard work on the treadmill which works wonders for me. Sometimes I corny walk a distance outside but I can always walk fast on my treadmill. It’s strange. I also have hand weights that I carry everywhere especially when the tremors start they have really made a difference to the strength in my arms I hope your wife feels better soon. Don’t let PDi ruin your lives. It is a fight every day and sometimes I feel like giving up but then I look at the faces of my grandchildren and I say you are not taking that away from me

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A great reply. Thanks. I like your comment about this being the kindest of neurological diseases. Being only 51, and I see you were only 47, it is really scary to read about how it might progress. I definitely have had depression and anxiety issues for a long time (which I understand might also come from Parkinson's...maybe that's another question to post some day!) so your advice not to worry is spot on with me. I've been working with a psych and trying to fit in some mindfulness exercises.

Your advice on exercise was also spot on. I've exercised for 30 years and feel very out of it on days I don't exercise. But when I was in the hospital recently with the pneumonia, etc, they put me in touch with physical therapy. I even argued with the PT to address the problems as pneumonia and the fact that I sat in a hospital bed for two weeks, but he said we needed to address the Parkinson's now to slow the progression later. After some research, I agree. He put me on a program called BIG...ie, big steps, big voice, etc...everything that gets smaller with Parkinson's, I should work on getting bigger. I think I just need to realize as I age, my workout routine should also change. And with Parkinson's, I also need to do things a little differently. So 20 minutes a day focusing on BIG stuff, some more time on things like balance and stamina (I'm exploring yoga), and then the rest on stuff I did before (bike, weights, walking...)

Just curious, do any particular exercises work especially well for you? I think the ultimate answer is that the best exercise is one that you personally will do. But I'm pretty motivated and right now open to changing things up, so anything you have for me to consider is great.

Thanks, twotutts!

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I was in more or less the same position at 58, though with probably slightly more advanced unrecognised symptoms which had been treated as non PD related ailments (eg frozen shoulder, broken toes from constantly bumping into things, back pain). It was a bout pf panic attacks with shaking and severe anxiety that had me referred to a neurologist. She examined me and with my history of cancer suggested I might have a brain tumour. I had an MRI which ruled out cancer and then a DatScan, which showed almost total lack of dopamine on left side. This neurologist had noted that I had no arm swing on right (news to me!) and also right sided rigidity so she was not surprised to diagnose Parkinsons. I was shocked. Until then I thought people with PD just suffered from tremors. She suggested medication but I refused. I then spent all my waking hours researching PD symptoms and though I discovered I probably suffered from many more (eg difficulty turning over in bed, blamed on new bed) I still found the dx difficult to believe. 6 months later I sought a second opinion which confirmed the first and I began to take Sinemet. It's the best decision I made. I went from being truly exhausted to feeling like the Duracell bunny. I had just thought feeling lethargic and apathetic was old age. I could also move better with less pain. However none of this stopped me from being in denial and 12 months in I sought a third opinion. Conclusion was once again PD and undermedicated! I increased the dose almost to humour him and hate to admit that it improved my evenings. Two years later, my symptoms are under control and I feel better than I have in years. However, I also take more exercise than I have ever done, 5 hours plus a week. There still isn't a day goes by when I don't think it's all ridiculous and that there is obviously nothing wrong with me. But my husband is quick to point out how much worse I was before meds, how I struggle first thing in the morning, how I take longer to do simple tasks than I ever used to, have less confidence etc. It is good to have him remind me because it's easy to forget. Many of my symptoms, such as anxiety were none motor and based on emotional reactions. I can still react with anxiety out of proportion to the circumstances and it's here where my doubts about a PD dx still kick in. I wonder if it was just a phase and if I came off the meds I would be back to normal. I worry about taking medication. On a bad day, I just worry. I am sorry this is a long reply but you really hit a nerve with your question. I think the answer is that practically I have my symptoms under control but emotionally I still do not deal with the dx very well and can only offer empathy and not advice.

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How much Sinamet do you take?

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25/100 3-4 times a day

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Thanks, jeansm. I actually had to laugh several times at your description because it is so just like me. The feeling that it is all ridiculous is one I think of all the time! Like you, I've also spent way too many hours researching Parkinson's. Right now, I can still blame any symptoms I recognize on other things (like the lack of balance being from the hospital rather than from Parkinson's). But I was also very interested in your Duracell bunny comment. Very early on, they gave me a sample of Azilect from the office, and I was in the hospital 5 days later because nobody said I couldn't also take Sudafed. Since then, my neurologist said she thinks not taking anything for now seems ok, with the basis being let's put it off as long as possible since each drug will only be effective for a finite amount of time. But you reference lack of energy, which is very interesting. I have pretty severe depression, which I can blame on childhood things like watching my younger brother die in a freak accident when I was seven and a bad family history with suicides and attempted suicides. My psych says there is a correlation between Parkinson's and depression and that depression usually comes ten years prior to Parkinson's diagnosis (the first time my depression was so bad I needed a med was 10 years and three months prior to diagnosis). I wonder if I should give stronger consideration to a Parkinson's drug, if only because of the energy thing. I'd still rather not take a drug than take a drug, but it is something I need to think about. I appreciate your empathy, and I emphasize with your situation as well. I can tell I hit a nerve because your situation is so similar to mine. Your message is very helpful. Thank you so much for sharing.

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I really struggled with the decision to take meds, though they were recommended at dx. I eventually made my decision to start on a feel good now, worry about the future later basis. Sort of one day at a time, I suppose. And it really did give me my day back. Apathy disappeared too but difficult to know how much to attribute to meds. I'd be interested to know how you get on. Jean.

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Thanks, Jean. Seriously, this has really helped. I will keep you posted.

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Yes I have been diagnosed for 14 years and I still find I go through days of denial. yesterday my wife talked about having a caregiver come in and help out and I just can't come to terms with that . it makes me feel that I am losing my Independence when we discuss things like that. I start my day pretty good. I'm on a lot of medication . yester i day was raking leaves only to have freezing occur little while later. this reminds me something is going on also gave me time to think about my wife and what she puts up with as primary caregiver, so I have decided that she deserves a good life and a quality of life so I told her if she felt I needed to get somebody in for help while she is working that I wouldn't buck her. She reminded me that it takes time to get things set in place with the medical profession like the Von. She said that could take a couple of years before we get somebody in to help. Meanwhile I need to be a little bit more kind to her as she is just being proactive. I realized I never seem to talk want to talk about she only learns things going on with me when we go in to see the neurologist . She finds that discouraging and I'm just coming to terms with how much I seem to shut her out. time to change and let her in. Hopefully this will be the beginning of a new relationship that seem to be strained because of this disease. I think I was trying to soften the blow for her and not realizing how much her life was affected but how I feel I felt myself physically and mentally anyways today is a new day and hopefully I have learned that my wife and I need to work together. Have a great day sorry for rambling.

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It's funny. Everybody who replied had a different, and most excellent, take on my general question. I like your point about considering it from your wife's point of view. Like I said, I was recently in the hospital for pneumonia and my wife, who just went back to work after years of staying at home to be with our son, had to take time off to take care of me. I tried to limit the burden my situation put on her, but she was clearly physically and emotionally exhausted. I'm sure I'm like you, don't want help if I can avoid it. But it is important we keep our eyes open for the effect on our loved ones, too. My wife and I thank you for your answer!

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Richardo123, This is good, that you realize by working with your wife on this, she feels she is helping you better, and, in the long run, it will be better this way, for the two of you, I believe. I went through a similar time with my daughter. Like you, I had freezing episodes while raking leaves etc. and was reluctant for her to get me help. Now, she has somebody to help with the lawn, and deep clean the house, every few weeks. It’s working out great. I needed to realize, though, that she just wanted help for me, not that she was taking my independence away. I realize now that, by letting her help me this way, she feels she is, in her own way, helping me cope with the debilitating symptoms, caused by neuro-degeneration in PD. Best to you and yours, always!

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This is all GREAT advice. I should have checked in with this group sooner. I want to respond to a lot of you directly; I'll work on that. But I need to get ready for church shortly, so it may be later on some. But thanks to all of you!!

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You got a lot of good replies to your questions & thoughts. I was diagnosed 14 yrs ago at 46. It was shocking but I accepted it and did lots of research. I found that exercise, nutrition, including lots of antioxidants, and reducing stress are a big help to delaying the disease. I hate taking meds, but have found they are necessary, but I try to take as little as possible. Exercise has been one of the most important things for most PwP's. Keep fighting! Debbie

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Thanks, Debbie. For me, exercise will be easy but reducing stress not so much! Thanks and you too!

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I am a physician and I also had 5 consultation, the 1 was a Geriatric who made the Dx of pd and refered me to a neuro, 2 & 3 were neuros then 4th & 5th were Motion Disorder Specialist (Loma Linda & UCErvine). They all concurre with the Dx. I have accepted that I am a Parky and follow instructions. I thank God often.

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Parky! Too funny! One them I get from the responses is to be thankful the diagnosis was so easy. God truly does work in mysterious ways! I got a true second opinion and then went to a second opinion service at work where a team of neurologists reviewed my records. The final was a movement disorder specialist. Thanks!

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This must be terribly difficult for you. By the time I was diagnosed I had spent two or three years trying to find solutions for different symptoms. Mainly pain. Hip, thigh, calf, back and especially my right foot in my toes, which curled under and hurt like hell. I found the inability to write very humiliating and stressful and when I went to a doctor's office and had to fill out forms I was not able to do it and would have to ask the receptionist to help me. People were so kind, which was a wonderful thing to find out. If I had been diagnosed before all of that I would feel very much as you do. Instead, after the initial shock I found myself grateful to at last know what the heck was going on. I'm glad you found this forum. It is wonderfully helpful.

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Thanks. The replies to my question have been wonderful. I wish you and the others like you didn't have to go through such heck trying to get an answer. I'm glad you have it. You are right, something like this can really open your eyes to the kindness of people! Thanks!

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Hi. I was diagnosed about 1.5 yrs ago at 36. I am just now coming out of the denial phase. Haven't told that many people. It's so hard to accept this diagnosis. I'm still bad at exercising like I should even though I am pretty fit, naturally. I have a 3&5 yr old and amazing husband which motivate me at times but I'm pretty sure the denial and depression keep me from doing what I need to do for myself. Even through all this I still feel that end the end everything will be ok. My symptoms are pretty much like yours. I make sure and count my blessings daily. I think I'll go run now! Hang in there. Each day is different.

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36, wow. With a 3&5 year old, I can't imaging you don't get a lot of exercise. Just curious what helped you come out of the denial phase? One thing I've definitely pulled from these discussions is what a blessing an easy diagnosis was and I really should be more thankful. It was also said Parkinson's can be one of the kindest of neurological problems (and I might add of all problems!). I'm not quite as young as you, but still plenty young enough to fight this thing with all the tools I have. For now, diet and exercise are at the top of the list. Maybe drugs, too. I need to think more on that one. Thanks, Jamie Lee.

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Once again, a lot of very insightful and thoughtful replies. You undoubtedly noticed the two schools of thought as to whether not you should take Sinemet or levodopa therapy at the time of diagnosis or when the symptoms interfere with quality of life. There are many who started levodopa therapy early and it works fine for them and there are others who have delayed and are satisfied with their decision. For me, I’ve decided to delay Sinemet. I was diagnosed in July 2011 and only take Rasagiline, relying so far on nutrition, and among others, anti-inflammatory and antioxidant supplements, and exercise. I’m fairly close to looking for a doctor to prescribe liraglutide off label. I believe that at some point, and ever increasing dose of Sinemet will almost certainly induce dyskinesia. Everyone on this forum, including you, understand the importance of exercising, but there’s a nuance to that that’s worth some consideration, that being, ratchet up your exercise now (to the highest level you can) while you still can. I never cease to be impressed with what a good attitude everyone on this forum has, including you. Strong, brave, courageous people – all. I wish I didn’t have it, but all in all I’m a happy camper. you play the hand you're dealt. PS, there is no such thing as too much research. Ha.

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haha, i sort of agree with your comment about too much research, but if there is one person who could overdo it, it's me! i've worked out regularly for 30 years and have been pretty good about it, but I think it's also time to cosisider changing the routine up a bit to acknowledge getting older and the Parkinson's. Thanks for the good summary on the schools of thought. and, yes, totally agree on the insights of this group. It is a very intelligent and caring group we have!!

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From 2014 says the jury is not in. (Don't shoot the messenger.)

" ... although there has been ongoing debate regarding the effect of L-dopa on neurons in PD patients. Some believe that treatment of PD patients with L-dopa potentially promotes neurodegeneration owing to the production of free radicals secondary to dopamine catabolism [31, 32], while others have found a potential neuroprotective effect in animal models [33, 34].

The ELLDOPA study was designed to try to determine whether L-dopa is toxic and accelerates the progression of PD [35]. Patients receiving L-dopa had less clinical deterioration from baseline than did placebo patients, suggesting a protective, rather than a toxic, effect. However, SPECT studies performed as part of this clinical trial demonstrated that patients who received L-dopa had an increased rate of decline in uptake of striatal β-CIT (a dopamine transporter ligand) compared with placebo, suggestive of a toxic, rather than a protective, effect. Therefore, the ELLDOPA study did not resolve the issue of whether or not L-dopa is toxic in PD [36]. Given the very robust beneficial effects of L-dopa for motor symptoms, the discrepant decline in imaging markers may be better explained by the artifactual effects on the ligands assessed (see below). The clinical effects of L-dopa are being studied currently in a delayed-start design (LEAP study) being conducted in the Netherlands (R. de Bie, personal communication) ... "

ncbi.nlm.nih.gov/pmc/articl...

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