Hi friends,
I have been diagnosed with FND and not Parkinson's. But there seems to be overlap and I am worried. Thiamine has calmed my tremors and strange movements.
My neurologist insists it is not Parkinson's and I am not even 40 yet. Anyway, I want to hear what supplements you take and what has helped you calm abnormal movements and cleared your cognitive issues.
Thank you!
Sending you all light and hope. 🙏
Can I ask how your neuro came to the conclusion that you have FND and not PD? What the diagnosis turned on so to speak? Did you have a DAT scan?
please can you tell me what FND stands for thanks
Hi JCRO,
The neurologist is at a top ten hospital and is a Parkinson's expert. She listened to my symptoms and health history. Then she did a physical exam and she was convinced I have FND only and no Parkinson's. But the symptoms for both diseases can overlap. And some have both. So I was worried. FND is new to me because I don't think I had it always or at least it was mostly latent or ambiguous feeling. I still want a second opinion or some testing done. This neurologist did not do any diagnostic tests. I suppose I have to see her once more within 3 months and see what happens next?
Take care your mithocondria:
- The best fuel to mithocondria are healthy oils.
- Go bed early sleep 6-8 hours on total dark without lights.
- Infrared light therapy.
- Niacin B3
- Thiamine HCL B1
- Milk Thistle
- Vitamin B9
Thank you.
I think sleep is very important and something I have overlooked.
I use the following
B1
Mannitol
Lion's mane (BDNF)
Magnesium
Ceylon cinnamon
Vitamin D
Omega
Broccoli seeds tea
I also changed my diet (not sugar, no carbs, no dairy), use red light helmet (Coronet), meditation every day.
Melatonin might be useful. It is made in every cell in the body and works to maintain mitochondria homeostasis while being the most potent antioxidant in the body through direct and indirect means. It also is a potent anti inflammatory while protecting dopaminergic neurons. Unfortunately it significantly declines with age in an inverse mode to age related diseases such as PD, AD and cancer to name a few. Melatonin replacement has shown benefit for these three diseases as well as many other age related diseases such as stroke, osteoporosis, diabetes and cardiovascular disease.
In the chart below you can see that melatonin declines very significantly by age 45 to 50 years. This is the same age range where PD and many other age related diseases begin to get diagnosed and progress at a quicker rate.
Art
Wonder why Melatonin isn't a part of hubby's (and my) daily regiment. Continue to see this in posts. You got me with "potent anti-inflammatory" and will now have to check into. Thanks.
This may help :
pubmed.ncbi.nlm.nih.gov/112....
Here is a relevant quote :
' Melatonin has been shown to possess anti-inflammatory effects, among a number of actions. Melatonin reduces tissue destruction during inflammatory reactions by a number of means. Thus melatonin, by virtue of its ability to directly scavenge toxic free radicals, reduces macromolecular damage in all organs. The free radicals and reactive oxygen and nitrogen species known to be scavenged by melatonin include the highly toxic hydroxyl radical (.OH), peroxynitrite anion (ONOO-), and hypochlorous acid (HOCl), among others. These agents all contribute to the inflammatory response and associated tissue destruction. Additionally, melatonin has other means to lower the damage resulting from inflammation. Thus, it prevents the translocation of nuclear factor-kappa B (NF-kappa B) to the nucleus and its binding to DNA, thereby reducing the upregulation of a variety of proinflammatory cytokines, for example, interleukins and tumor neurosis factor-alpha. Finally, there is indirect evidence that melatonin inhibits the production of adhesion molecules that promote the sticking of leukocytes to endothelial cells. By this means melatonin attenuates transendothelial cell migration and edema, which contribute to tissue damage. '
It is worth noting that this study is 23 years old, so everything I have been saying about melatonin is not new by any stretch of the imagination and I have been saying a lot about melatonin on this forum!
Appreciate this.
I added a chart in my original reply that shows how melatonin declines with age and I added a chart to this reply to show how PD increases around that same age of 45 to 50 years of age. I don't think I can post both charts side by side so I have to do it this way so you can see the comparison.
My new neurologist thought I had FND as well, and not PD. He disagreed with my neurologist in California (I moved to WA). He said we could be sure by doing a skin biopsy called the Syn One test. My insurance only covered 60% of it so I paid the rest. I wanted to be sure. They take 3 patches of skin, from 3 different locations on the body and send it to a lab in Arizona. What they look for, among other things, is the alpha synuclein protein found in Parkinson's. It is not only in the brain, but they found that it is also present in skin cells of those with Parkinson's. My test came back positive with 2 of the 3 patches showing the presence of the protein. I'm more at peace now knowing I'm on the right treatment program and my old neurologist was spot on.
did those patches leave a permanent scar? and did they have to anesthetize those areas? thanks for the feedback
No scar and yes on local anesthesia. They were very small patches of skin.
thanks for the feedback
Thank you for sharing these important details. I will ask my neurologist for testing.
Unbelievable , self diagnosed, Hypochondriacs , many who probably have nothing wrong with them . Targets for those who prey on the better educated who have problems like compulsive and impulsive disorders. I guess all we can do is warn the others and be thankful,we are not one
well my neuro/MD thinks i'm nutzzz in self-diagnosing my PD. ... But he's wrong ... I'm right.
what is FND?
Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke. FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures.
FND is a condition at the interface between the specialties of neurology and psychiatry. Conventional tests such as MRI brain scans and EEGs are usually normal in patients with FND.
Have to wonder if sometimes pollutants, industrial chemicals, ag and military chemicals, etc most recent and long ago in the soils, water tables and rivers are also not involved, there are so many of them, and so many of them hidden. Just see the latest on 3M corp. There's a map of these things somewhere and you would be surprised how many of them are nowhere near where you would expect, and very many near where you have been... Some of these plumes are never identified because of political or lobbying suppression by the companies, lots of exposures happen when someone new moves into an area that was polluted and contaminated decades before but the new move-ins have no idea of the long history... And I don't think these are screened for routinely at all among health facilities, insured providers who are not allowed to spend too much, and simply because medical people don't always know about environmental pollutants... No matter where you have been. Just because we don't always know what it is doesn't mean it's not "structural."
And by the way, the clinical use of the word "functional" means "we don't know" and "it could be real but we don't have the knowledge or technology to confirm it as a fact or describe its mechanism, but we don't like patience thinking we don't know everything definitively, so give it a fancy name that seems to put the blame on the patient's imagination." In other words, it's a cover term for DOCTOR'S blinders. Sort of a functional "autohysteriosis pseudologia medicalis." (Also to get paid they absolutely must have a diagnosis label and billing code to bill for, which may be wrong but that's how it is, else insurance company won't pay, so something has to be in the insurance company diagnosis listings, and this happens even in socialist countries because of ongoing data activities for various governments and research, you have to be able to be classified.)
You can't always or entirely blame the doctor though, neurology is murky, and all doctors learn by rote not experience or knowledge, So something doesn't exactly fit in the system they are rather blinkered (I have been told this by a lot of different doctors and a lot of different specialties, all asking me to keep the secret).
What is FND?
please before that anything else you should have a second view in out is wrong with you I don’t this system .
Learn something new everyday. Never heard of FND nor have I heard of a Syn One Test.
Here's what I found: apdaparkinson.org/article/n...
Very interesting. Only new of the DAT Scan. I'm curious if hubby's neurologist has done this test or not (on his 4th neurologist for various reasons).
Supplements: HB1, Vitamin C (to keep uti's at bay), Vitamin D and a Vitamin B complex (with B6 and B12), Mannitol Balance
All I can say is that some disorders, neurologically, can be very challenging to diagnose. There are theories, by some neurological investigators, for example, who state that Parkinson’s Disease diagnosed, is actually a number of diseases, rather than just one.
My understanding is that FND is more a dummy term for - somethings wrong, but can't quite say yet what it is
My current stack:
Theanine
N-Acetyl Cystein
Ubiquinol
NAD
Ambroxol
Curcumin
Mag. Threonate
Melatonin
ALA + L-Carnitine
UMPEA
Have you got PD? I ask bcos i don't see any PD meds on your stack
How melatonin been helping you?
And I ask this from everyone I see with a long stack... How do you manage space them out? Or do you take them in small groups, if so how do you ensure they don't interact negatively?
I have no diagnosis but some elements of dysautonomia and quite a few elements of parkinson's - suspecting prodromal msa. I don't space out much, ubiquinol with breakfast as it is recommended to consume with fat. Ambroxol i space out according to clinical trial, rest I take approx 1-2 hours after dinner. I feel the nights with melatonin I get more restful sleep, less frequent waking periods, have tried on and off and feel there is a difference. Doesn't hurt if it also has neuroprotective features.
Hello Zappy ~ The only things I will add are TruNiagen and Restore Gold.
My hwp has been on TruNiagen (3 caps ~ 900 mg of nicotinamide riboside chloride) for almost a year now. Within 3 weeks of starting this I saw improvements in his brain function.
He has only been on Restore Gold for about a month now, so time will tell.
“We’re” doing several other things as is the case with many PwP’s on this forum so there could be some others, but who knows!!!
He’s had to back off exercise due to unresolved hip/pelvic/gluteal pain. However, he still manages to stay busy with jobs around the house.
I hope this helps! Have a fabulous day!!
B1 and Magnesium - helps with all around symptoms of PD (tremors, stiffness, etc)
Lithium Orotate - this one helps tremendously with cognition. I have written about it extensively.
I have tried dozens of other supplements that supposedly boost dopamine but in my experience, they just further disrupt the neurotransmitter imbalance. Its different for each individual, though.
Hi, I take the following -
250mg B1 daily
500 ug B12 every 3 days
2000 IU D3 daily
1 heaped tspn of raw cacao in warm water every morning with a dash of milk (it stops me from getting cramps)
2.5 mg melatonin at night
Has anyone here tried salidroside for their cognitive issues?
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