my grandfather had Parkinson's. My mother had essential tremor, which I developed in my late 30s. In my late 50s, the nature of the tremor changed and I began having occasional trouble walking, muscle weakness, mild cognitive issues, among other sx. My doctor wanted me to be evaluated for PD but then I moved across the country and they would not accept her referral here. after years of effort, I was referred to rheumatology. The referral said I had joint pain. Because at that time I did not have an elevated ANA, they said no need to come back. Because I have POTS and get migraines, I got a referral to neurology who said they would monitor me but since I had essential tremor and am aging, it was all to be expected. They have now been monitoring for 8 years. because I have MCAS, I worked long and expensively with a functional medicine doctor and healed my gut. Following Covid, that has come undone, that doctor quit, as have five of my other providers. I've learned reading here that the constipation which I now have had for months for the first time in my life as well as intractable insomnia which I've had for 10 years and now means 0-3 hrs shallow broken sleep, might fit the Parkinson's picture. I know what my grandfather's tremor and movement looked like and mine look like that. i'm now in my late 60s, the age at which he was diagnosed. I know it is not only essential tremor--it's no matter what I do and at rest. I'm going to have to move to get care. My medical chart here leads with this dx: anxiety about health. how and where to begin again? how to get around Google search garbage about where the best Parkinson's care is? In the US, alas. I appreciate deeply the level of scholarship and sharing here and expect to continue that sort of thing. I knew I had pots in 2008 but could not get anyone to pay attention or test me until I went to the Cleveland clinic in 2014 so I don't expect to be able to surrender my care to anyone else but unfortunately I cannot order my own testing or imaging. I am more angry than anxious.
dx then un-dx: my grandfather had... - Cure Parkinson's
dx then un-dx
Remedies for Parkinson's constipation: healthunlocked.com/cure-par...
I take it you are in the US as I am. When I started having significant neurological symptoms, I called the local neurologist, made an appointment, and got a diagnosis. I suppose everywhere is different, and maybe I was just lucky.
Rest tremor can occur alongside essential tremor in PD leading to missed diagnoses. Studies show that essential tremor and PD can coexist, despite the misconception that they cannot. Both conditions can have various types of tremors. Rest tremor can be seen in 20-30% of patients with essential tremor, especially in severe cases. Action tremor can occur in both conditions, with kinetic tremor being more pronounced in essential tremor. Head and jaw tremors can occur in both, but with different characteristics. Bradykinesia and freezing are specific to PD. The diagnosis may need to be adjusted as the clinical features evolve. Objective measures and imaging can help differentiate between PD and essential tremor, though imaging has limitations.
where are you located?
You might ask Dr. Mischley if you can send a clothing sample to her for her dogs to sniff to help determine if you actually have PD. This can be done quickly and simply if she agrees. From what she has described, her dogs seem to have a very good detection rate. Those results might be very helpful in helping you determine where you might best concentrate your efforts. Here is her contact information :
Dr. Laurie K Mischley, ND, PhD, MPH
Address: 2111 N Northgate Way Suite 221, Seattle, WA 98133
Hours:
Open ⋅ Closes 5 PM
Phone: (206) 525-8012
seattleintegrativemedicine....
Regarding POTS, have you had your vitamin D level checked recently as low vitamin D is common in both PD and POTS and can help with some cases of POTS. Magnesium sufficiency is also important for POTS, PD and health in general.
I wrote a little about vitamin D and PD here :
healthunlocked.com/cure-par...
Art
thank you for your reply. I'm excited to learn more. I had heard about the dogs sometime ago and forgotten. And I'd seen Dr M's name on this site but hadn't looked it up yet. I just looked at the website and it's a dream. My idea of medical care. Not surprising because I used to live in Seattle but can't afford it. (I was on a affordable senior housing waitlist for six years but by the time my name came up, my immune system had conked out. Buildings with large populations aren't a great fit anymore, alas.)
in 2008, I had my vitamin D tested for the first time by a Dr who studied in Russia. It was single digits. Does anybody know why Parkinson's patients have low vitamin D? I wonder. I will read what you wrote and see if there's an answer there. Thanks for that, too.
I also take magnesium citrate because I have metabolic acidosis and it alkalizes...
It isn't just people with PD who have low vitamin D levels. Vitamin D levels, like melatonin levels seem to decline with age. In studies, people with very low vitamin D levels are often the ones who get the best response to high enough vitamin D supplementation as opposed to those who are in range for 25 OH d, which is 30 to 100 ng/ml (US) as the reference range. Some people with POTS and low vitamin D seem to respond better to vitamin D repleteness. Some people with POTS do not seem to improve even with increased vitamin D level because they do not seem to utilize vitamin D properly and in such cases the active form of vitamin D, calcitriol given by your doctor may be more effective.
There are often other deficiencies in POTS and PD such as the B vitamin group and iron for POTS, that should be looked into also.
Art
Thank you. I know low vitamin D isn't diagnostic for PD but I didn't know any of the stuff about deficiencies and POTS. My D levels are good but POTS worse. I do have low ferritin. I would like to take your info to my new cardiologist In hopes of being tested/treated. (I have ever lower ionized calcium levels so was prescribed calcitriol last Fall by an endocrinologist who failed to tell me it was necessary to have lab work every two weeks and didn't order it either. still hasn't)
Since you might be sharing information with your new cardiologist, you might also discuss adding melatonin for POTS with them. Here is a study suggesting some benefit for POTS from melatonin :
ncbi.nlm.nih.gov/pmc/articl....
Here is a relevant quote from the link :
' Melatonin produced a significant, moderate decrease in standing tachycardia in patients with POTS, although it did not improve symptoms when taken in the morning. '
To make such a suggestion more palatable for your cardiologist, you might consider this topical melatonin lotion that I wrote about here :
healthunlocked.com/cure-par...
Your cardiologist may find melatonin more tenable in a lotion form such as I describe in the above link as opposed to oral melatonin.
Another important consideration with melatonin is its heart protective effects and anti CVD effects that I wrote about here :
healthunlocked.com/cure-par...
I've written extensively about the role of melatonin in PD and AD here are just two examples :
healthunlocked.com/cure-par...
healthunlocked.com/cure-par...
Art
Your POTS could be a vitamin B1 deficiency. youtu.be/84lRoZKMte8?si=rmc...
Another idea is that POTS could be due to gluten which normally comes with refined grain (it's possible that it may be due to both) youtu.be/5R1m5cflQDA?si=GqD...
Thanks for this. I got rid of gluten corn and casein, having tested positive for allergies to both, in 2014. I have an auto immune pan-endocrine disorder and as that has worsened, so have my pots symptoms. I've been unable to find anybody around here to take on that particular challenge.
What do we know about ESSENTIAL TREMOR and can you have essential tremor but not PARKINSONS DISEASE?
He’s Better Than Before DX!!
Experienced some tremor relief
tremor
How about a Limerick?
