Is it Parkinson's or not?

I, too, was diagnosed with PD while living in retirement in Brazil 8 years ago. Having been a Vietnam vet and a Marine stationed at Camp Lejeune (contaminated drinking water lawsuit for PD and many other afflictions), I returned to the States only to find I'd lost a good chunk of my Social Security (I never planned to return to the U.S., so the Soc. Sec. Department withheld a year of my payment and deducted 10% of my Social Security for each year that I lived outside of the U.S.--not paying for Medicare Part B, which is useless outside the country.) The first neurologist I saw, as a cash customer since I wasn't getting my Medicare for my first year back, said he was 99-percent certain that I had Parkinson's Disease. And he was a highly respected neurologist. When I finally settled down and was able to visit a VA hospital, they set me up for a DaTscan, which came back negative, and then a skin biopsy--inconclusive results. I was then pretty-much told to "get lost." I'd had tremors for about twenty years prior to returning, and had trouble walking, was unable to get in and out of a car or bed, so I continued seeing neurologists through Medicare with differing opinions, but no specific diagnosis. Finally, eight years after first being diagnosed with PD, I saw the head of the neurology department at Stanford Medical, who told me that I had Functional Neurological Disorder, also known as Conversion Disorder. The symptoms vary greatly and doctors are reluctant to give this diagnosis. Neurologists sent me to psychologists and psychologists told me to see neurologists; and on and on it went. Neither discipline would take responsibility for giving any specific diagnosis. I'm now working with physical therapists and exercising regularly. I have a healthy diet, a loving wife to back me up, and I'm through with seeing doctors unless some part of my body is broken. I'm still living with my Parkinson's symptoms, and fortunately they haven't gotten much worse. And my spirit isn't broken. Although I no longer depend on the VA for assistance, they do tremendous work for veterans who live in some regions; in others, especially rural areas, they simply wait for the older Vietnam vets to die. For too many vets, it's a sad state of affairs--losing their homes (purchased on the GI Bill to foreclosure due to a reversal of support by the current administration), having their healthcare cut drastically, feeling deeply betrayed, and even losing all hope. I'm moving forward and although I'm no longer able to drive a car, I stay active, working with other veterans at a grassroots level of all political ideologies and ideologies to come together to stop privatizing the VA, a ruse to siphon money up the line. That's the lone governmental agency that our government (Congress, Executive Branch, and high-level officials) is afraid of agitating in any way. They're going after every other government-related group except the Veterans Administration. There are as many as 18 million veterans in the U.S. We are a force that can fight to protect our civil liberties and due process. I hope you get the care you need to stay as healthy as possible. You'll likely experience disappointment, but stay strong and be your own advocate.

Wow, you've been put through the wringer, haven't you? Thank you for sharing your story and especially about the Functional Neurological Disorder/Conversion Disorder. I've never heard of it (and I used to do medical transcription for a neurologist). I wonder if learning to meditate might help to relax your brain.

I am scheduled for an MRI in a week to rule out Vascular Parkinsonism. As much as I don't want to have PD, it would be the lesser of the two evils - at least Parkinson's can be treated, whereas Vascular Parkinsonism has no treatment at all.

I wish you all the best, and our country, too. You are correct about what this administration is up to - working hard to help the rich get richer, at our expense. I am a vet, too - I served in the Air Force in Desert Storm - possibly the briefest war in history. My cousin, Arnold (Arnie), was a Marine like you who also served in Vietnam. He was killed In Quang Tin province on May 26, 1967. To this day, we continue to mourn his loss.

Semper Fi!

Glad to hear back from you! And hope you don't get bounced around like me. I had a girlfriend who was doing TM: Transcendental Meditation in the mid 60s, so I tried it, too, and continued for several years. I'd been studying martial arts back then, too; first Aikido, then Wudang (Kung Fu ), one of the internal martial arts; I studied Chen and then Yang style Tai Chi, Xing Yi, and Ba Gua, all of which I've been practicing daily for the past fifty-plus years. These forms rely on relaxing the entire body, being rooted into the earth (grounded), and moving the entire body as a single unit keeping a soft gaze (same as in all sports, I guess). Although considered internal soft-forms, they are extremely brutal in practice. It's often difficult for me to get into the state of mind in which to do the practice correctly. I really have to settle down and get focused. It certainly counts as meditation. Fortunately, as an international pro surf bum, I had the opportunity to travel quite a lot and learned the arts from several generations of Chinese Grand Masters, so I learned from the best, such as Dong Hu Ling, one of the first Chinese Masters to teach the traditional Yang long form in the U.S. He'd fled from Mao in the early 60s, going to Hong Kong, then Singapore, and finally to Oahu, where I was introduced to him. I found some old 8mm videos of him on Youtube. I feel light-headed and dizzy most days, but I do my best to get grounded enough to do my practice, even if I can only do 20-30 minutes of Qi Gong exercises, which I do before bed most evenings.

Regarding Functional Neurological Disorder, I was evaluated for rTMS (repetitive transcranial magnetic stimulation) treatments this past Friday. That will involve a series of treatments over a 3-4 week period, doing several a day. The regional VA hospital in Palo Alto offers it. I've also gotten platelet-rich plasma (PRP) therapy injections. It's the only VA hospital in the U.S. that offers it--trying it out on my torn elbow ligaments (tennis elbow.) Aaron Judge got them for his toe, Raphael Nadal and Stephen Curry both for their bad knees. I also had an MRI of my brain done yesterday.

When stationed in Hue, I got to experience incoming mortar rounds up close. I'm currently receiving a 20% disability for shrapnel wounds to my upper arm and shoulder; had a couple of minor surgeries which cut down on pronation while serving in tennis, but I was young and shrugged it off. But finally after all these years, I'm getting checked for TBI; had a brain MRI yesterday, in fact. I'm kind of pissed because so many of the service men and women (enlistees, not draftees) are realizing their 6-yr enlistments are a long, long time. So they're being schooled on how to milk or "bilk" the system into getting out of the service with high disability ratings. My wife's a clinical social worker, and from what she tells me, they would have been kicked out of the service or seen as malingerers. They're filing for and getting 100% for PTSD or winning claims for sexual harassment. Marines who were sent to VN mostly came back, if they did come back intact, got DD-214s; and we came back thousands at a time, inundating the VA to the point where we were for the most part, ignored, or those of us who stood in lines wrapped around VA offices and got to be evaluated at all were considered lucky to see a gate-keeping doctor, but in no way anyone in the psychiatric field. I connected with my new primary care doctor during my all-day VA visit last week who, because we're both activists, although I'm more of an agitator, went out of his way to get me every bit of care and referrals he could--chest x-ray, inhaler, nasal spray, appointment with a speech therapist (having trouble being heard and swallowing pills), got a mole photographed to be analyzed (have had lots of skin cancer removed--downside to a life outdoors of surfing and tennis.) We ended up talking for about an hour. We really need to fight to keep the VA from being privatized. The only way we can make this country better, and it's in sad shape right now, will be when we mobilize from the ground up. And working with fellow veterans is a great way to mobilize, organize, and form a committed, diverse, and solid base of supporters. Healthcare sucks. Veterans get the only universal care that every other industrialized nation affords its citizens because they it's a right. Here, it's a seedy, for-profit racket. I was able to get virtually free healthcare even in emerging countries during the years I traveled around the world looking for waves and new places to surf.

Have you considered getting a second opinion? There are several other diseases whose symptoms mimic Parkinson's. If you have any one of those, rather than Parkinson's, the concern is that if you're given an incorrect diagnosis, you'll be given the wrong treatment, I had trouble getting a diagnosis because the only symptom I had was increasingly severe fatigue. I went through an extensive series of tests - 3 times! at 3 different hospitals and none of the testing results yielded a definitive diagnosis of PD. After exhausting all the tests, the 3rd neurologist tried one more thing - he gave me an l -dopa pill to see how I responded and it was a miracle. ! hour after taking it, I could do things I hadn't been able to do in a couple of years (like go to the bathrooom on my own) But all 3 of the hospitals where I had my testing were reluctant to make the PD diagnosis for concern that it could be one of those other diseases and they were reluctant to send me down the wrong road. Your neurologist could very well be right. This is a disease that presents itself many different ways and she may have had other patients that presented their PD in the same way as yours. You might want to ask her whether the tests definitively ruled out the other diseases that mimick PD. If you have confidence in her response, then you can ask her "What's next?" If you don't feel confident in her answer, then it may be prudent to get a second opinion. It may not be necessary to repeat the tests - it may be sufficient for a different neurologist to look at the test results you already have and verify that: 1. the array of tests you've had covered all the bases; 2. These tests reasonably ruled out any of the other diseases that mimic PD; and 3. he/she would have reached the same conclusion as your neurologist. If the answers to all of these question is 'Yes" then you have reason to have confidence in your diagnosis; If the answer to any of these questions is "No", then ask the 2nd doctor to recommend what needs to be done to rule all of the mimicking diseases or to more definitivelly confirm the PD diagnosis.

I've pretty much had it with neurologists. There are two in my area who the people in my Multiple Sclerosis/PD group have raved about. I've tried seeing them through VA Community Care (takes a long time to get approval, but makes it affordable), but each time I try to make appointments, they tell me they're either not taking new patients or they put me on a waiting list and when they finally get back to me and I go through the VA approval system, it's too late to get an appointment. I see someone at Stanford, two and a half hours from me, which costs $350/visit cash, but all I got was a semi-diagnosis of having Functional Neurological Disorder. I'll try to get in to see one of the quack neurologists on my Medicare plan and let them know that I'd like to try Levodopa, the first medication I was prescribed four years ago. It's worth giving it another shot. I don't like taking any meds, and my wife wants me to take another DaTscan. But at this point, I'm willing to try anything. I'm happy for you that you found help and shared your story with me. Thank you.

Yes, I do think I will ultimately need to get a second opinion if the upcoming MRI doesn't provide any answers. As much as I like my current neurologist, I'm concerned that she is a little too committed to her original diagnosis. I think it would be a good idea to have a 2nd neurologist take me through the clinical exam again, to see if they see my symptoms the same way.

Thank you for sharing your story and for your suggestions. I wish you well with your health.