Parkinsonism Traits with No Diagnosis I’m Frustrated, Anyone else?

@SusanEllen66 I don't think you are alone with troubles getting a diagnosis with your symptoms after having many tests and along with the different diagnoses. Have you seen this information from the Parkinson's Foundation?
-- Conditions that Mimic Parkinson's: https://www.parkinson.org/understanding-parkinsons/getting-diagnosed/conditions-that-mimic-parkinsons

@SusanEllen66 - Having only a "best guess" after four years of testing would be really hard. I'm sorry to hear that.

I'd like to tag a few Mayo Clinic Connect members who may empathize with the results you've gotten after all this testing or have other thoughts for you from their personal experiences or those of a loved one. Please meet @larryh123 @hbjuniperflat @teacher502 @raebaby @amesmassage @psvantx @adrienne625 @katiecat1.

What did your PCP suggest you do next, SusanEllen66? Are you looking at getting another opinion?

Like you, we had many diagnoses over several years, many doctors, many meds, many ideas -but the problems persisted. Finally, we went to Mayo Clinic in Jacksonville. Initially, after many tests over a period of 3-4 days, they told us my sweet hubby most likely had mild cognitive impairment with a high probability of Lewy Body Dementia. (We were shattered and at the same time thankful for an answer - even though it was one we didn't want.) In time, as more symptoms appeared, the Lewy Body became the official diagnosis- and our hearts were relieved and broken at the same time. Now, four years later, I know they are right.
What I want you and others to realize, is that even with many doctors from many specialties and all sorts of costly tests, some of these diagnoses are hiding and just waiting to magnify themselves at an unknown time. I feel like you will get the answer you need in time - and you will be both relieved and possibly sad.
If I were you, I would look at my bucket list and try to make some of those things happen and try to stay focused on what I can do now. Take a break from doctors and tests if you can. And, if you have not been to Mayo Clinic, you might want to give that a lot of thought. We will always be grateful for the help they have given us over the years. They have access to doctors and research from all over the world....even now, when my hubby can no longer travel, the team of professionals continues to support us with encouragement, knowledge and compassion. Please let me know how I can help. My heart senses your fear and your frustration- and hopes the best for you in your life.

Parkinson's is often very hard to diagnose.1. I have seen some tests mentioned in this Support Group of some tests that are perhaps better than others, but so far as I know there isn't a definitive test.2. It is further complicated by the fact that there are lots of diseases that mimic Parkinson's and if the doctors jump on a PD diagnosis before they have ruled out the other possibilities s, then the treatmenr for Parkinsons may not be helpful. 3. Parkinson's can manifest itself so differently from patient to patient. Some folks with PD don't present any standard way. I had only one persistent symptom - just growing profoundly fatigued more and more. That's not much to go on. All of what all the others above said is true. It's vey frustrating, even when you have the best doctors that have ever graced the planet.(which I was fortunate to have had..) Most of us have been there, done that, and got the T-shirt. ;It sounds trite to say it, but it's true: Just take one day at a time; do what you can,but also take care of yourself. When you fly on an airplane, the safety instructions tell you that if you are traveling with someone who needs help, put on YOUR OWN air mask first (because if you faint from lack of air, you're not going to be much help to the persol you're traveling with .Sometimes an occasional massage might help. I've watched m beloved husband do so very, very much, and get so very very tired, and after my diasgnosis, when I get meds that helped , I could do more an more on my own and was able to fre up a little bit of time where he didnt' have to wait on me hand and foot and could do a few things he enjoyed. like sleep. through the night, which he hadn't done for a year.Celebrate the little victories when you can.

Ask your neurologist about the SynOne skin test. It is the most sensitive one for PD and Lewy body protein called alpha synuclein in our skin nerves. Three small pieces of skin sent for special testing. It was as just FDA approved last year. Results take several weeks after review by several specialists. Mine was worth the waiting.

@lisalucier at this point, I have seen 3 Neurologists who specialize in Movement Disorders. They all concluded, until very recently, that I have FMD/FND.
The other Neurologist is one I’ve been seeing for about 10 years because of Polyneuropathy. He diagnosed me with Alzheimer’s Dementia. When the movement issue started, he told me to go to a movement specialist, and I did.
The Alzheimer’s diagnosis was incorrect. Now they say I have MCI with visual memory loss.
The end of this month, I will be 76. I live alone in my own home, and am struggling a bit to maintain it.

I can’t imagine going through more “hoops” for now, so I will see what happens next and go from there.

Thank you for your help!

@seniormed thank you!

@jatonlouise thank you! I do agree with you.

I am Joe and recently signed up with Mayo Connect and have read some of your comments on how hard and long it is taking to get a diagnosis for Lewy body dementia with Parkinson. I have a family history of dementia and for some time had been experiencing some symptoms. The first symptom was active body dreams and some cognition issues. My neurologist at Chapel Hill UNC hospital in NC diagnosed me with 2 tests. One was a skin biopsy and also a lumbar puncture. They were test for my genes because of my family history. I don't have specific details referencing the tests but would be glad to get them from my doctor if anyone interested.
Joe46

Hi @massee01 - welcome to Mayo Clinic Connect. I'm glad you personally got some answers, and I appreciate your interest in helping others streamline the process to getting a diagnosis. I think a long and winding journey to a diagnosis is hard on everyone. It delays any treatment, psychological adjustment and/or treatment, logistical planning and more.

If you could post in this discussion the names of the tests you were given that gave you a definitive diagnosis with Lewy body dementia with Parkinson, I think that would be helpful for other members.

If I understand correctly, these are tests for those who have a family history of this disease or similar? If you have any information on eligibility/ suitability for these tests, that would be great.

Also, massee01, when were you given your diagnosis? How are you feeling about it?