Pre diagnosis to post diagnosis. And I am curious if anyone else has had a similar ride? Carpal tunnel, anyone?

[PalmSprings]

I wasn’t sure what was wrong with me. I spent many years dragging myself through work, sleeping restlessly, aching everywhere. I felt like I was aging at hyper speed. I had new symptoms that became unbearable: numbness and tingling on my right side and then I had a slight tremor in my right hand. My right arm was hurting along with the rest of my body but it caused it not to swing the same as my left. I dragged myself to work; I am a teacher. It was actually the first day of school. The numbness on my right side had reached a new level of weird, so I slipped over to the nearby clinic at lunch. I thought I was having a stroke or a TIA and I guess they did as well. The nurse pulled me in, ahead of a long line of people. Things happened fast. The doc analyzed me and my symptoms. She sent me on to a neurologist, post haste. Within minutes after a few quick tests, he sat me down and said, “you have Parkinson’s”. The drugs for me have been a miracle; not that they take away every symptom but they do take away most of the pain for at least glimpses of time. “The miracle”, I speak of, is really in the contrast to my life before drugs compared to my life after the drugs. I tell people, “the drugs take the edge off”.

My Symptoms (from age 36 to diagnosis at 55 and beyond):

1. Restless sleep averaging maybe 4 to 5 disturbed hours per night from the age of 36

2. Chronic neck aches and stiffness from the age of 36 (origin thought to be whiplash from a bad car accident)

3. Carpal tunnel syndrome (finally operated on at age 45)

4. Body aches and stiffness

5. Right side stiffness causing right arm not to swing

6. Right side numbness and tingling

7. All beds seemed uncomfortable - It felt like the bed was touching my body in all the wrong places (very hard to describe).

8. Osteoarthritis in knees - so bad I had to walk backwards until I got the autologous stem cell replacement therapy

9. Heart Palpitations - diagnosed as afib

10. Hypotension/real low blood pressure causing fainting

11. The symptom that made everything diagnosable was the right side resting tremor which cropped up last when I was 55.

............many other symptoms but I think these maybe relatable to many of you?

I went through 20 years undiagnosed because I put up a good front. I did not talk openly about all my aches, pains and strange symptoms because I was raised to be a good sport. I think “being a good sport” was a good way to go because when I was diagnosed I went into a bit of a tailspin for about a year until I made peace with my reality.

I have been most curious to ask if anyone else had carpal tunnel syndrome or at least a sore painful wrist issue?

[rescuema]

It is clear that you've experienced long term inflammation along with possibly under methylation that caused high histamine (restless sleep). Were you often bothered by allergies? Acid reflux?

I suspect that you may have had a long term deficiency in b6 and probably b1 as well based on your symptoms - both B6 and B1 are often used for carpal tunnel syndrome treatment. Benfotiamine (a fat-soluble B1), especially is helpful in addressing CTS as well as peripheral neuropathy (tingling, numbness, pain, etc). B12 is another suspect for the cause of p neuropathy. Lacking any of b6, b12, and b9 (if MTHFR genetically compromised to use folate) can contribute to elevated homocysteine = high inflammation that contributes to all your aches, stiffness and pain.

If your oxidative stress and inadequate methylation can't keep up with the need for detox (compromised gluthathione activity) and provide adequate nutrients (needed for mitochondrial function) for the dopamine producing neurons to function/survive, it can lead to PD, amongst other etiology. High inflammation is high on the list and mitochondrial dysfunction causes chronic fatigue.

I'm not sure if you've read through the recent thread on B1, but it's worth checking out.

healthunlocked.com/parkinso....

[PalmSprings in reply to rescuema]

Thank you for taking the time and for being so clear with your response. Much appreciated!

[rescuema in reply to PalmSprings]

I hope it helps!

[M-o-ggy in reply to rescuema]

How much B6 , B9,B12 should I take ?

[rescuema in reply to M-o-ggy]

It depends on an individual.

Blood test would be ideal and recommended but the lab tests can be expensive.

If you suspect deficiency, try sublingual b12. Safe for most.

If MTHFR compromised, methyl folate (active b9) - unless you're undermethylated and have mood related disorders - get it through diet.

Take either B6/P5P if deficient, up to 100mg a day. Some deficiency symptoms might not go away until 30-100mg. Start with 10-20mg first to see if the symptom goes away, but take it furthest away from PD meds.

You can also try a well balanced formula such as Pure Encapsulation's B Complex Plus, and back down or skip doses if not well, and try to eat a well rounded diet.

[M-o-ggy]

Reading the other posts I also have allergies and reflux and at the moment am responding well to B1.

[M-o-ggy]

In my original post ( obviously pressed the wrong button) I said that my symptoms mirrored your except that mine is the left side and I don’t have carpel tunnel Years of going to the Doctor with an increasingly long list of symptoms. Then classed as psychosomatic.

The Vit D means that I don’t have arthritis anymore Well just sore joints when the weather changes dramatically. All that pain over most of my life.

[rescuema in reply to M-o-ggy]

”Then classed as psychosomatic.”

This is unfortunately common. The fact of the matter is that most MDs do not have adequate knowledge of nutritional science and assume their problematic patients must conjure up illnesses in their head when they do not have explanation nor prescriptions to address the issues. The last thing they suspect is vitamins and minerals deficiencies especially because so many foods have been fortified over the years (along with many wrong stuff). Slow improvements are occurring with the newer insights in genetics and with the power of the internet but the boxed in thinking/training is going nowhere anytime soon.

[PalmSprings in reply to M-o-ggy]

Have you now been diagnosed with Parkinson’s? How much Vitamin D do you take? By the way, thanks for the reply.

[rescuema in reply to PalmSprings]

It differs for everyone what the proper vitamin D dosage is to get the blood level up to an acceptable range. For some, they need 5000 IU or more, others around 2000 IU, or much lower than that. A higher dosage isn't always optimal, and should also supplement K2 to prevent issues or resort to getting some sun light (best way to avoid toxicity) . In the US, insurances rarely cover for vitamin tests, and I myself have to pay $150 per vitamin D test. It is a critically important vitamin that functions like hormone, telling genes to turn off/on.

[laglag]

I'm glad you are finally feeling better. About 17 years ago, I thought I had carpel tunnel because my wrist was hurting really bad because I was holding my pen so tight. I made an appointment with my doctor and he sent me to a neurologist and I was diagnosed with PD.

[PalmSprings in reply to laglag]

Interesting, I am wondering if a sore wrist may be common amongst us? Thanks

[Goldencbc]

I experienced many of your symptoms for years prediagnosis ie fatigue, poor sleep, aches, stiffness, acid reflux. I attributed it to a very stressful job. A week after I retired at 67 I was diagnosed with afib. Then I developed a frozen shoulder and a year later had surgery which fixed it. Within months I was diagnosed with PD. I had a right arm tremor in the midst of the shoulder issue but was not diagnosed til later. Despite all of my annoying symptoms I had considered myself relatively healthy as I exercised and ate well. I wonder if the shoulder issue (and hip arthritis ) are similar to your carpal tunnel. I do take b1 and other supplements and c/l did relieve some pain. Perhaps I will start a b complex based on the feedback. Good luck.

[rescuema in reply to Goldencbc]

Yes, a good methyl B complex is a good start. B1 is just one of the many needed for your body to function, but one of the quicker ones to deplete out of brain (especially for smarter people). Missing any of the Bs will contribute to myriad health problems, just as a clock will fail with a gear malfunctioning. Minerals such as zinc, copper, magnesium, calcium, potassium, selenium, iodine, etc., are all of tremendous importance in the right amount and balance.

[PalmSprings]

Wow, your story sounds so familiar. My doctor’s office had a sign up that said one symptom a visit. When that sign went up, I changed doctors, so many diseases have multiple symptoms. Perhaps, if anecdotal descriptions, like ours, are reminiscent of our disease, diagnosis could be made a little easier. I know our experience does not represent all who have our disease because the disease has quite a wide spectrum. But many of us present the way we do perhaps. Thanks for responding!

[Hidden]

Your restless sleep could be a common PD non-motor symptom - REM-sleep Behaviour Disorder. I used to thrash around and verbalise during REM sleep making me tired the next day. I now take 1mg clonazepam before bed and that has solved the problem.

[rescuema in reply to Hidden]

She was describing before the diagnosis starting at age 36.

But with PD diagnosis, yes, suspect REM sleep disorder because of compromised melatonin production, a probable sign of b6 methylation deficiency among others.

[Hidden in reply to rescuema]

RBD is often seen before diagnosis.

[rescuema in reply to Hidden]

Compromised melatonin production, especially with those challenged by SAM-dependent methylation, a sure path to any disease.

[Hidden in reply to rescuema]

What other diseases present with RBD as an early symptom other than PD, MSA and LBD?

[rescuema in reply to Hidden]

It was found that about 38% of people with RBD developed PD, LBD, MSA, etc. What do you think would happen to the other 62%?

Sleep disorder is an early indication that something is wrong and likely compromised to develop diseases, and is present in countless stressed individuals, just as in many posters on this forum. RBD is severe enough, it's highly unlikely people would describe it as simply "restless sleep" don't you think?

ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to rescuema]

People have many ways of describing their problems. We do not use standardised language.

If I knew the medical journeys of those who did not end up with parkinsoniam problems, I would not have asked.

[PalmSprings in reply to Hidden]

Very true, what an interesting point about standardized language. Even when I wrote the original post, I was having a hard time trying to think of clear relatable descriptions of my symptoms.

[rescuema in reply to Hidden]

Too many diseases are possible with inefficient SAM methionine methylation cycle involving B6 for critical neurotransmitters synthesis, just not as statistically significant to be correlated strongly as in PD/RBD and such.

[Hidden in reply to rescuema]

I would not worry people with possible health issues that are not statistically significant. This is a support forum and not a scare forum.

[rescuema in reply to Hidden]

There are lots to worry about (in addition to the growing environmental toxins) unfortunately, and one should stay vigilant to address any developing illness especially when experiencing persistent unexplained symptoms. Too many people are genetically compromised to be complacent especially while blasted with pro-oxidants that could easily skew the balance for the worse, unlike you and some with genetic lottery who don’t believe in doing so nor necessarily need to supplement.

[PalmSprings in reply to Hidden]

Thank you for the info, I am learning so many things from this group.

[PalmSprings]

Thanks for your suggestion!

[RS313]

yes i have this with my right wrist now,it is so painful sometimes i cant even hold a glass of water.Before i was diagnosed i was diagnosed with tendinitis in my wrist.they started giving me steroid injections which helped temporarily but not permanently. Then when i was Dx with parkinsons and got on the meds it went away for a bit but now that my meds dont last as long it is back when i am having off times

[PalmSprings]

Interesting, I had a real hard time holding a glass of water as well. I am still wondering how common this is. Perhaps this is why people have micrographia?

[Bundoran]

I have osteoarthritis in my right wrist (good side) which up to now I have blamed on a dodgy golf swing. I also have a friend with P who has sore wrists. Makes you think!