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

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?

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.

@teacher502 Thank you for sharing this excellent advice! Getting a diagnosis for one’s issues is such a frustrating experience. We all present in different ways especially while it’s early. While the journey may have similarities it will also have differences. My diagnosis was Aug 11, and it has brought me some peace for my “odd” symptoms. I cannot say it was a complete surprise, as my uncle had Parkinson’s, and my dad had Alzheimer’s; but it did take me a week or two to adjust and develop an actionable plan. I have prioritized a break from being poked, tested and doing any more research. I had already arranged most of my EOL stuff, so I am finally free to take a long needed vacation from EVERYTHING! I realize how fortunate I am to be able to do this. I don’t sweat the small stuff ( like the also recently diagnosed indolent lymphoma and ascending thoracic aneurysm). Friends tell me I have my smile back! I laugh a lot and am back to enjoying this beautiful world around us. Are there bad days? of course. But I am very grateful for what this experience has taught me. Today the sun is out, and I can hear the neighbors toddler giggling, it’s a good day!

@janna2

I had the same issue that went on for years…. I kept losing my balance, fell probably 50 times…I went to the Cleveland clinic and saw a neurologist there. He diagnosed me with psp, which is not what I wanted to hear, but at least I have a reason for my falls. Anyone else been dx with psp? It is rare. I would welcome a conversation about it..

@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.

@teacher502 Your response is so spot on. I am in the medical field and a gerontologist. Medicine is far from perfect. When dealing with brain disorders, the brain is so complex, getting the correct diagnosis is VERY difficult and is very often a process of elimination over time.

You have excellent, intelligent advice. God bless you.

@lisalucier
I had skin biopsy and received a 95% positive for PD. I feel fortunate as at my first appointment with neurologist I was diagnosed in 15 minutes. I would encourage anyone working through diagnosis to request skin biopsy. Took three weeks for results.