Trouble diagnosing Parkinson's or other condition. Go to Mayo?

Have you been in the military? I think a lot of my exposure to toxic substances around the world while I was in the military has a lot to do with my Parkinson’s

@jiminkansas I can understand why it's taking so long for the VA to respond - they simply don't have enough people and nonetheless they have recently had funding diminishsed and several VA workers have been RIF'd. I shan't indulge myselfI (wife of a Veteran) in a rant about that because that won't help you in the teeniest bit. One thing that might get you better results is to contact your Congressman and your Senators about this. If nothing else, if he/she doesn't respond as you would wish, at least you'll lnow not to vote for him the next time he runs. Your elected representatives have lots of green weenieson their staff who are just tickkled speechless to work 100 hours a week for embarassingly low wages for Congressman Bilbo or Sentator Dumbledore. and it is their plight in life to make their boss look like Mother Theresa or Superman to the rest of the world. handling a constituent's problem (most especially those of a Veterean) helps them achieve that goal. .It might even get him some free air-time , too. So go to Congress.gov and type in your address. The name and contact info on your representatives should be revealed unto you as if by magic. Don't be worried if some young person who sounds like they're still in high school calls you to see what you need. It's not an insult. Senators and Reps have their hands quite full at the moment. And, even if they didn't, some pimple-faced 19-year-old probably knows a lot more about the ins and outs of getting problems addressed because they've been hired specifically to do this work and many of them are just as bright as a brand new penny (except that we're not going to have any more brand new pennies,arew we?) and smart as a whip. Someday THEY may becone an elected representative. The really clever ones develop relationships with the people tasked to respond to these kinds of requests -- learning skills (and developing an impressive Rolodex/ contact list) to become a Senator of Representative themselves). I don't know what your elected State Reps and Senators would be able to to to help you, although the Governor may be looking for ways to help them climb that ladder. You can help with that if he sucessfully solves your problem with VA - every body benefits in the back-sctatching game here and your taxes are paying the salaries of the people you are asking to help you. Leverage them to work for you.

@chrissyv153
It is so good to hear from you again. You have provided a glimpse into your Parkinson's journey, and I'm glad that you shared it with us. While it is impossible to answer all your questions, it is important to consider many of the improvements made since the introduction of the medications. It is a great indication that you can now use your right arm and hand. If the carb/levodopa is helping, that is one important sign of a PD diagnosis. Also, the fact that your pain has improved is a good indicator. Pain and stiffness are signs of PD that generally do improve with medication.

My PD diagnosis came after many tests and years of being uncoordinated and feeling klutzy much of the time. After all sorts of tests to rule out other brain disorders, my neurologist put me on carbidopa/levodopa, and my symptoms improved, which confirmed a PD diagnosis.

Regarding your anxiety, I was also anxious after my PD diagnosis. However, once the medication started to work and I noticed the benefits, I began to relax and accept it willingly.

You don't mention any physical therapy or any regular exercise program. The combination of medications and exercise is vital to PD management. Has your doctor referred you to physical therapy specific to PD? If not, please ask about it. Exercise will be good for your PD symptoms and also for your anxiety. The more control you take over both disorders, the better you will feel.

Here is a link to a video from the Parkinson's Foumdation about the benefits of exercise for PD,

@hopeful33250
Hello to all who responded to my post, and thank you for your support and kindness.

I am sorry to have just dropped off the radar. It has been a very long and challenging 6 months.

In July, I saw a neurologist at the Mayo Clinic, who also conducted some in-office physical and mental testing. After about an hour, she confirmed a Parkinson's diagnosis, much to my surprise, as I thought I passed all the tests with flying colors!

Then began the nightmare.
Shortly after my appointment, I started experiencing terrifying panic and anxiety. I was prescribed hydroxyzine, which only works by making you sleep, and when you wake up, you're exactly in the same place of terror. Then clonazepam, same thing.
After much research, I quickly learned that Parkinson's is not only a physical disease but also a mental disease, and that many people with Parkinson's experience this.
From my research, I also saw that many Parkinson's patients were taking the antidepressant sertraline for panic and anxiety. My neurologist wanted to start me on carb/levodopa but I knew I needed to address the panic first.
Apparently, my neurologist was unfamiliar with antidepressants and the effect they have on treating Parkinson's panic and anxiety.
I reached out to a local Dr. of Psychiatric Nursing for help. She saved my life.
It was all I could do to drag myself up to the computer to communicate with her through a patient portal. At this point, I couldn't be in the same room with my family and hear them talking or tolerate ANY noise. My husband couldn't leave the house, and I couldn't be by myself
but had to be by myself! I was literally in bed all day.
My Dr. prescribed sertraline. To make a very long story short, the medication made the panic and anxiety much worse, even though we titrated very slowly. Many people can't tolerate the horrible side effects of getting on this medication but knowing that it was prescribed routinely to Parkinson's patients, I had to try. The medication can take months to work-or not! I was very sick with unbearable panic, nausea, brain zaps, hot flashes, chills, dizziness, and uncontrollable tremors.
It took me about 3 months to start feeling better.
I take 62.5 mg of sertraline a day and am also taking carb/levodopa 25/100- 2 1/2 x a day.
I am better.
I do still wonder if I have Parkinson's or some other movement disorder.
Does Parkinson's anxiety cause my tremor? Or does my tremor cause my anxiety?
Which medication is helping me the most? All questions that have no definitive answer.
I would like to have the SYN ONE skin biopsy test for Parkinson's. Mayo doesn't endorse it, but my neurologist is willing to do the test sometime in the near future.

The pain in my arm has subsided- now I'm PAIN IN THE NECK!!!! ha
and I have regained some use of my right arm and hand and am able to wash my hair and brush my teeth again with my dominant hand.

This is a very long journey to diagnosis and proper treatment, but you have to stay strong and resilient. Ultimately, you have to be your own advocate and never stop researching and looking for answers. There were many times I would say to my husband," I can't do this anymore, you have to call 911 or take me to the emergency room!" But what are they going to do?
Like Michael J. Fox says, "Who are you going to call?"

I do believe in the power of prayer and have many brothers and sisters in Christ praying for me.
The Lord is good!

Thank you all again for reaching out, and do keep in touch,
Chrissy

@jiminkansas My husband sees his doctor every 6 months and can converse by email or phone if he feels he needs an adjustment in his medication. Once a year doesn’t seem like enough. Best of luck.

Hello @jiminkansas, and welcome to the PD support group on Mayo Connect.

Medication and exercise are both critical in treating PD. Have you been referred for physical therapy? If not, this would be helpful, and I highly recommend that you ask for a PT referral. Here is some information about the importance of exercise for PD from the Brain & Life periodical:
https://www.brainandlife.org/articles/staying-active-slow-cognitive-decline-parkinsons-disease
You mention that you feel your condition is worsening. Can you describe the symptoms that are most bothersome right now?

I am 77 years old and was diagnosed with PD three years ago. Im retired from the Navy, and my primary health care comes from the VA. The neurologist that is caring for me said to take carbo/levo twice a day. and see him in a year. After reading some of the comments in here, I'm really afraid that see me in a year may not be sufficient to get the care I need. Plus I can feel my condition getting worse. How often should I be seeing him. Or someone.

Many, many folks in this support group have had similar experiences (myself included). Here's the deal: 1. There is currently not yet a test that can definitively determine whether a person has Parkinson's Disease. Except an autopsy (which most of us are disinclined to pursue, at least not yet). So at the moment, the doctors must rely on a combination of tests and then infer a diagnosis through an assortment of tests and observations. What makes diagnosis of PD so difficulr is (a)There are a number of symptoms that folks with Parkinsons have. (e..g., no sense of smell, constipation, tremors,etc.) BUT each of the symptoms can also be caused by a wide aray of different things. So one individual could have a number of these symptoms but just having symptoms CONSISTENT with PD doesn't mean that the person HAS PD. because there are several diseases that mimic P.D. 2. Two patients can have the same symptoms BUT person A can have PD while person B doesn't. B's symptoms can be caused by many other diseases. If the doctor misdiagnoses Patient B as having PD when he doesn't, then he will give Patient B the same treatment plan as he gives to patient A. This means that Patient B will not receive the right treatment plan for his disease, which can create a big problem for him - wrong diagnosis=wrong treatment plan.
Further, PD can manifest itself in many differrnt ways. There are a zillion different symptoms of PD. Patient A may have one set of Symptoms ( say, symptoms #1,3,5,7 and #9)
while patient B has symptoms #2, #4, #6, #8, and #10. They don't share a single symptom BUT they both have P D.
In addition, 2 patients may have exactly the same configuration of symptoms ,but neither of them have PD. Patient A's symptoms may be caused by a single non- PD disease while patient B 's symptoms are caused by a combination of different diseases which he has been cursed with, but none of them are caused by PD. Bottom line : PRESENCE of EVERY PD symptom associated with PD doesn't necessarialy mean a patient HAS PD, and a patient with ABSENCE of a single PD symptom does NOT mean the ABSENCE OF PD.
Further, many symptoms are not considered symptoms of anything and many folks may just assume that they're meaningless. I never considerd my REM disorder a big problem and eould never have dreamed that it was worth mentioning to my doctor. just as I would never have dreamed that the fact that I was always the coldest one in the room nor that my fingernails broke so easily would be worth nentioning to my doctor. But they are classic symptoms of low thyroid (which was discovered by the blood test I had in the hospital ER where my work colleague took me after I fainted. Given all of these factors, it's flipping astounding that ANY cases of PD are disgnosed. It is my understanding that there is a blood test that might provide a definitive diagnosis, but it's not ready for prime time yet. Success here would be an ENORMOUS step! Not only would it enable folks with PD to get treated earlier, but just inagine the cost of the resources to get a diagnosis! My experience is similar to so many others Over a period of 3 years, ( one year of that time I was totally bed-ridden) I went through the Neurology depts at 3 hospitals where I spent a total of 100 days altogether), and had all the tests known to the Western world -'CAT scans, spinal taps,MRIs, PDQ's , SOBs, WTF's, and LSMFTs (you must be 2 days older than dirt to recognize this acronym), and, most importantly, my husband endured so much stress (when this time in our lives should be stress-free) and missed a lot of time I could have spent w.ith my grandkids, who took the liberty of growing up while I was otherwise occupied. Wish I could give you infornation that could materially improve your quest for a diagnosis. (But I would encourage you to ask for a test that's inexpensive, virtually pain- free, and quick (about 90 minutes total) and could provide an important result.- Ask you doctor to test how you respond to l-dopa . Basically they do the normal pull, push, hitting your knees with a rubber hammer tests, then give you an l-dopa pill, and come back in an hour. Then they see what you can do. This test saved my life by getting my diagnosis, and hence treatment.)
The best I can do is wish you a speedy diagnosis and let you know that you aren't the Lone Ranger here, so Hi- Ho, Silver, and off you go! ( also need to be older than dirt to get this reference. 😉

@seniormed
Thank you so much for the valuable input. My husband and I are planning for the future by getting on the waiting list for a senior living community with full service as needed if things continue to progress. I am 74 years old and he is 81 - everyone tells us "don't wait too long" to prepare and we are heeding that advice. My next neuro follow-up is in January and I'm anxious to get his opinion on my current status. Fine motor skills are deteriorating some and my gait issues are more pronounced - still no significant tremor. We'll see.

I was anxious to have testing with a family history in two first degree
relatives. My local neurology consultant did not want to pursue autonomic testing. I sense that they may be hesitant to make the diagnosis prematurely.
I was fortunate to get an appointment with the autonomic team at Mayo
Rochester after a 6 month wait.
I choose to know as I am 78 and want to optimize my planning for the end game.