What were your symptoms at first and whom did you see?
Thanks for all you guys for your discussions. I can definitely relate to almost all. My grandmother died of parkinson's and dementia and believe had lbs then now my aunt has parkinson's i havent had contact. I have been so sick for 3 years. Just wondering what other doctor can I see if my neurologist i seen for migraine won't listen and all others just do random blood work. Reading your stories is like reading myself…
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Hello @jen80 and welcome to the Parkinson's discussion group on Mayo Clinic Connect. You ask some good questions about how do you know if you have PD and what type of doctor is best to diagnose this disorder.
Probably anyone who has PD will give you a different narrative as to how they came about their diagnosis. My journey with PD started 20 plus years ago, but it was officially diagnosed until I began to have falls which was about 12 years into the beginning of my symptoms.
I began by having gait problems, swerving to one side, especially when I was tired. I also had small motor problems, i.e., difficulty with buttons, putting on earrings, etc. Balance was of course an issue as well. I used to go to aerobics classes, but had to stop because my balance issues caused me to bump into other people or into walls.
I visited two different neurologists when the symptoms began. One thought it was early-stage MS and the other thought it was early-stage PD and both said they might not know what it was until my symptoms got worse.
If you feel you have symptoms of PD, it would be wise to seek a referral to a movement disorder specialist. These are neurologists who have had special training in movement disorders (one of which is PD).
The unfortunate thing about PD is that there is no specific test to provide a diagnosis. It is mainly a process of ruling out other neurological disorders. A movement disorder specialist might refer you for an MRI of the brain to rule out other possible reasons for your symptoms. Nerve conduction studies might also be done for the same reason.
In my case, when all else was ruled-out, the neurologist put me on a small dose of Sinemet and titrated it (increased the dose) over a month. I felt so much better when I reached the 3rd week of titration that I knew I had the answer.
So, tell me a little about your interest in PD. Are you having balance issues or gait problems? What about your taste buds and your ability to distinguish fragrances or smells?
My PD symptoms started with tremors and a loss of my sense of smell, but it was finally diagnosed after years of mostly unsuccessful treatment for Essential Tremor, by a test called a datScan. Evidently though the test is only available at major medical centers where its results require expert interpretation. I did visit a movement disorder specialist for a second opinion and I would suggest that is a good idea too. Good Luck,
Thank you so much!
Hey there, so I remember when I used to walk with someone I would always be walking closer and closer into them . I'm always bumping into something. When you say your loss of smell, is it you don't smell anything? Because I've noticed for awhile that mine has changed very very much. Also my taste buds??? I crave cheese and love picklejuice (I know they're not the best) but food all together just doesn't taste good to me like it did. I can't explain it. Another thing bothers me severely, is my memory, or cognitive thinking, brain fog. And that I have been getting irritated with just the thought of trying to get a doctor to at least listen for 2 min. I wish the best and I tysm for the advice! Going to look into that . Message me anytime
It would be a good idea to consult with a movement disorder specialist. Have you discussed this with your PCP?
Please keep in touch, @jen80, and let me know how you are doing in your search for a diagnosis.
Do you have an appointment with your PCP coming up soon?
(7 years ago) My husband noticed my shaking right hand at the end of the day, asked how long it had been happening. I said a couple years, but only when I used my hands a lot during that particular day. Being a retired GP physician, he watched me for a week without me knowing and after a week said we should go see a neurologist since he noticed the shake in my right hand, less swinging of my right arm while walking, a bit of a gait issue on my right side, and my face having a mask-like appearance. Two months later I had completed a sleep study, where they found I had REM sleep disorder and I had a DatScan… X -rays of my brain after being injected with some radio active stuff that is supposed to light up the part of my brain that controls my movement. There it was-my scan showed deterioration of mostly the left side of that area. I was 54 years old at the time. We started Azlect/Regasiline to slow the progress. I feel like I had a honeymoon period for 6 years when the symptoms were mild and I didn’t hide it from anyone, but things changed a year ago with increased tremors…now on both sides/arms and now legs. Also my handwriting turned into chicken scratch, and I began having to search for words while telling a story. I went through the ‘Big & Loud’ physical therapy, but eventually would quit the excercises at home over time. I even started Rock Steady Boxing which was great! A year ago So with all these issues of deteriorating my mobility, mood, and balance, I worried about the stress it was putting on my marriage. I have a wonderful husband, but I can’t help but feel guilty for putting us through this. I have increasingly become unbalanced and lately have begun to fall. He is older (75 yo) and these burdens have contributed to my worsening depression and I have been hospitalized 4x in the past 6 years now for depression and suicidal ideations. I started Sinamet(Carbadova/
Levodopa a little over a year ago, first was 5x a day which was every 3&half hours, and I got my handwriting back, but a few weeks ago I switched to RyTary slow release Rx and spread it out to 4x over 24 hours (once every 6 hours so I set my alarm for 1am, 7am,1pm,7pm.). I also take meds for depression, anxiety and still take the Azelict/Resagaline daily. I now have digestive issues with cramping, constipation lasting 6-7 days followed by severe Diarrhea when I take a laxative, leading to dehydration. Then it starts over again… It is called GastroParesis and I was miserable! The cramping pain turns out to be food not digesting in my stomach (not emptying and still being 59% full 4 hours after eating). I also had C.Diff in February, so I have been working on getting the right gut bacteria in my large intestine and have started the FodMap diet which should help with the GastroParesis. I was just discharged from a week in a psych unit, after more suicidal ideations.
I do not want Parkinson’s, but writing this has helped clarify my situation by getting it all written down. I included a image of my DatScan and an image of a healthy Scan.
Good Luck, pam
Hello @tachimp and welcome to the Parkinson's discussion group on Mayo Clinic Connect. I so understand your frustration with the PD symptoms. It is difficult to navigate all of the meds and the physical and emotional responses to a neurological disorder like PD.
Many of the symptoms you mentioned are shared by all of us with PD, including sleep problems, constipation and generalized movement disorders.
Here are some Connect discussions that you will find helpful
–Anxiety and Parkinson's
–Constipation and Parkinson's
–Parkinson's and Sleep Problems
As you read these posts, please feel free to respond to the posts by clicking on the "Reply" button and then you can ask questions of the person who posted.
I so understand you when you say, "I do not want Parkinson’s, but writing this has helped clarify my situation by getting it all written down." Mayo Connect is a great place to get these feeling out there and see what other people are thinking and feeling as well.
I look forward to getting to know you better. Which of your PD symptoms are the most difficult for you right now?
My family is riddled w PD and the older they lived the more pronounced it became. When the info came up via robin Williams brain donation, that there is no gene for it but there is for Anxiety Disorder. I was led 25 yrs ago by a brilliant psychiatrist that my daughter was using, that , one my anxiety at 44 was way off the charts although no depression was evident. And that the sooner I got on an anti-anxiety drug the better as there was a lot of conversation about it being the root cause of the PD and to nullify that advancement. So I did. I have never had a PD issue….not pilling….which I saw in my aunts and cousins and esp my mother. She died of it at 94 but it stole more than 3 decades from her as her anxiety was so difficult on my father in his last years. She refused to take anything even though I’d been on Effexor xr for 15 yrs at that point. What I have learned in my family, and I am now 72, is that every one of them who got PD had high and horrible anxiety for many years before their electrical system broke down w PD. I still have not a sign of it and I don’t ever intend to get off this medicine . My husband says he has the happiest marriage of anyone he knows. It’s the Effexor! I saw the tide turning in me in my forties and got help. I would have been just as messed up and miserable as my mother had I not listened to my friend the famous shrink. If you have it in your family and you know it, and you see that your anxiety is rising , get help. Btw…..I remember him saying to me, “you are the least depressed person but anxiety disorders untreated turn into depression and sadly the person gets treated first for a depression that wasn’t the core problem”…….He has passed away but I never forgot his words to me!
AS I read this, I am realising this is exactly what has been happening to me. Everything I have been doing over the last 15 or more years has been riddled with anxiety and hyper vigilance. The gift of being a second generation holocaust survivor raised in the Ukraine … of course I have high anxiety, of course! Today I saw a long covid specialist for a follow up and she suggested I take anxiety meds … I am now seriously considering it because my depression and isolation have been through the roof. Thank you. I am now convinced that my tremors are 100% anxiety driven.