Symptoms of PD, seeking answers. Anyone experiencing the same?

Here’s a phone number for the help line at the Parkinson’s Foundation… 1-800-473-4636, or you can email them at helpline@parkinson.org! They are very helpful and will respond. Another organization that I learn from is the Davis Phinney Foundation. They have a YouTube Channel that has allot of videos that help you…. as well as Webinars where you can listen, learn, ask questions.

Hello @bobconfused,

Neurological problems can be challenging to diagnose, as so many symptoms of various disorders tend to overlap. I had symptoms for at least 10 years prior to my diagnosis so I really understand how frustrating it can be.

Many of @jatonlouise's suggestions are good. Especially about taking copious notes about your symptoms, when they appear (for example, are your symptoms worse early in the day or later in the afternoon when you are tired, etc.), how your symptoms respond to exercise, rest, etc. Do you have pain accompanied by stiffness, etc. @kayak461, also made a good suggestion about visiting the Davis Phinney Foundation website. They really have great webinars that are available to view and offer great educational material.

I found an article on the Mayo Clinic that I found pretty helpful as an overview of PD symptoms. I would encourage you to read this article. Here is the link, https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055. After you read the symptoms listed there, write down the ones that apply to you and take notes about how often these symptoms occur.

Next, go to the Diagnosis and Treatment icon. Here is the link: https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/diagnosis-treatment/drc-20376062. Here, it lists all the different ways to diagnose PD. One of the diagnostic methods that worked for me was the following:

"A short, low-dose treatment of medicines. You may be given medicines used to treat Parkinson's disease to see if you get better. If your symptoms improve significantly, this may help confirm your diagnosis. You must be given a sufficient dose to show the benefit, as getting low doses for a day or two isn't reliable."

After 10 years of stumbling, walking awkwardly, being extremely fatigued, and having numerous tests and scans to rule out other brain disorders, the new neurologist I saw suggested that I start a dose of Carbidopa/Levadopa, and I found relief from my symptoms. I realize that starting medicine before being diagnosed seems a bit backward, but it made a difference for me. By the way, I also had the DAT scan, and it was also normal, but without the medication, the symptoms worsen.

While I haven't read all your posts, I'm wondering if you have sought a second opinion. Over the years, I undoubtedly consulted with at least five different neurologists. Finally, after 10 years, I found a neurologist who was willing to try me on a low dose of PD meds, and that confirmed what I already realized to be true.

As many others have said, keep persisting. I know it can be discouraging, but it is essential not to let yourself think there is no help. Being your own advocate for the best possible care is not easy, but it is definitely worth the effort.

I look forward to hearing from you again. Will you continue to post as you look for answers?

Your symptoms were practically identical to my husbands. The DATSCAN was positive for PD, diagnosed last Oct. The DATSCAN is a pretty significant tool in show your dopamine levels in your brain. My husband was deficient in his levels. With that and the symptoms, it was his diagnosis. The doctor placed him on Carbidopa levodopa initially, but he did not respond well to it, especially in the sun/heat. He now takes Ropinirole for PD and his restless legs, and he takes low dose Tramadol for pain. I know this can be a very scary process to go through, but don't give up in finding what works for you. With the right meds and exercise, you can help to manage PD. Fight the fight my friend! Know you are not alone!

With the exception of the folks in this support group, I do not peronally know anyone with PD. But my experience with getting a diagnosis has generslly been consistent with most of the other folk here...a long time to get a diagnosis . Every test known to modern medicine, repeated many times by different people in different hospitals, on different planets ( not really but I wouldn't want to rule out anything) and still a hesistant diagonosis , e.g., a long list of what has bern ruled out, a long list of symptoms, some of which could possibly indicate PD ( or something else). Next step would be to consult with those guys -or gals- in Las Vegas who calculate tthe odds fo races , football games, and boxing matches to give us the odds for it being PD. And then flipping a great number of coins, and then hedging their bets by calling it idiopathic PD. This is by no means a criticisn of any of my 974.5 doctors. They were smart, competent , diligent, and compassionate. Diagnosing PD is just very, very difficult and it takes however long it takes. They are working on ways to definitively diagnose it. I'm not sure hiw to plug into the research going on but I would imagine the folks at Mayo could have some ideas or contacts. The one thing that might help shakeva diagnosis fall out of the tree is keeping a precuse record of your symptoms Nothing should be dismissed be cause something that you might think is unrelated might actually be a key that unlocks an answer. For instance, mot folks wouldn't think their doctor would care that their fingrrnails break easily and that they're always cold. But these are the smptoms of low thyroid, and need to be treated. The more reliable and complete info your doctor has, the better diagnosis he can make. We need to do things like this to help our doctors help us.;-)

@jatonlouise - I have had the symptoms of Parkinson's Disease for 15 - 20 years, but I was blaming them on Ischemic Heart Disease, and Hypothyroidism. My wife told me I was walking differently and said she thinks I have Parkinson's Disease. I consulted with Dr Google and asked for a list of Parkinson's Disease symptoms. There was a list of about 30 symptoms, and I had about 25 of them. I got to a neurologist that specializes in Parkinson's. Within 30 minutes he confirmed that I do have Parkinson's. Now, 2 months later I'm still having all of the same symptoms while taking Carbidopa - Levodopa.
One more month for a follow up appointment.

Best of luck to your on your journey of getting a solid diagnosis and treatment.

@barryl Thank you for your concern Your experiences make mine look like a walk in the park. It only 3 years to get my idiopathic PD diagnosis (Advanced Stage.)All my doctors hsve been splendid and my symptoms are under control. I'm using a new treatment. I still take some pills but my main med I have a pump that delivers my l- dopa subcutaneously. It was approved bt FDA in October 2024. And it's primarily for folks with Advanced stage PD. I got my pump in February 2024 because I live in Germany and it was approved for EU in January 2024. My neurologist was on the medical board that evaluated it for release in the EU, so that gave me a bit of an edge. The company that makes it is ABBvie. Search for the company name and 'subcutaneous l-dopa pump. I don't know whether US health ins. My meds for the pump alone are
€ 6,000 a month. My German insurance pays 100%. I don't know how US insurance is dealing with it, but I'm grateful that I'm here. I'll be glad to answer questions if I can. I love my pump .

jatonlouise - Wow, your German insurance sounds wonderful, and the medicine used in your pump is kinda pricey. I see why you are living in Germany. Almost all of my most serious illnesses were caused by agent orange in Vietnam. I'm covered by the VA 100% for all medical needs as well as dental. The VA is usually not one of the first to start adding expensive meds to their formulary.

The neurologist that diagnosed my Parkinson's Disease ordered a cane and a walker, and a bunch of tests during my initial appointment. So far, I don't need to use the cane or the walker, but I can tell that I'm not too far away from needing them.

Hello
It took me 3 years to get a “diagnosis. I also saw a regular neurologist who really knew nothing about PD. At the time it was not on my radar at all. I didn’t present as a typical PD patient. I was 50 years old, no tremor, very active (biking,skiing, aerobics etc..everyday). I had a stiff right shoulder. I couldn’t open and close my right hand and the toes on my right foot would curl under when I got in the shower in the morning . I chalked it up to my workouts and that I was getting older. When I finally saw a Movement Disorder Specialist (MDS) she said to me you have a dopamine deficiency. She started me on SINEMET . I asked how long would I be taking this and she said I would probably be on it for the next 30 years . Again, I thought nothing of this, I had family and friends that are on meds for the rest of their lives. It wasn’t until I got home and googled SINEMET that I found out it was used almost exclusively for Parkinson’s. I was in shock. After speaking with my MDS, she explained the only way to confirm her diagnosis was if the SINEMET helped my symptoms. Which it did. UGH 😩 I was in denial for a few years. Thinking there must be a mistake. Here I am 13 years later and I can look back on those initial symptoms and know they were so obviously Parkinson’s.
Sounds like you may have PD. I am sorry. But, if I were you I would get a second opinion from a MDS. I am still with mine and she has been a wonderful resource and support for myself and my family. Wishing the best.

Thanks! I'll note the Movement Disorder Specialist in my pd file. I have so msnu very mild cases of age ,(80) appropriate illnesses and see a specialust for most of them, and have physical therapyv2x week and speech therapy 1x week so My dance card is pretty full and i'm in a fairly decent place wrt just living my life that I'm reluctant to add another soecialust at the moment, but if i get to a poibt where I have enough brain cells left to incorporate another specialist, look into that. It's akways handy to hsve another option for a fallback plan 😉