Pain : Hi - my name is Shirley and I was... - Cure Parkinson's

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Pain

shirleyb53 profile image
11 Replies

Hi - my name is Shirley and I was diagnosed with Parkinson's 7 years ago. I've been having terrible leg pains when I lie down and it wakes me up in the night. It usually starts in the lower abdomen/Lower back. I just started getting pains in my leg about 2 weeks ago. Have any of you experienced this with PD?

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shirleyb53
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11 Replies

I have. No pain since having epidural injection.

bassofspades profile image
bassofspades in reply to

I have been getting increasing upper leg pain lately too. Started physical therapy 2 weeks ago. So far its not really helping. But tonight i came across a writing by Dr Marty Hinz of the famous amino acid protocol, in which he mentions briefly leg pain as a symptom of epinephrine imbalance in relation to the other neurotransmitters, which can be caused by low sulfur ion donor levels. This is recommended to be corrected by supplinenting L-cysteine. Where i think i went wrong is i switched to NAC because it was cheaper, but according to my reading tonight it is not effective whereas L-cysteine is. I'll get with my supplier tuesday and see if this gets corrected by switching back to L-cysteine. If not i will need to further adress my spine issues. Magnesium has been no help to me either, though i read from others here it has helped them.

bassofspades profile image
bassofspades in reply tobassofspades

Category 4: Problems caused by depletion of sulfur amino acids by l-dopa: Bradykenesia (epinephrine depletion implicated), akinesia, dyskinesia, dystonia, chorea, extrapyramidal side effects, fatigue, abnormal involuntary movements, and depletion of glutathione potentiating further dopamine neuron damage by neurotoxins

bassofspades profile image
bassofspades in reply tobassofspades

Management of sulfur amino acid depletion by l-dopa

The sulfur amino acid l-cysteine was selected for use due to its role in synthesis of enzymes that catalyze monoamine synthesis. Theoretically, from the standpoint of enzymes that catalyze monoamine synthesis, any sulfur amino acid, with the exception of n-acetyl-cysteine and glutathione, may serve as a sulfur donor in enzyme synthesis. From a database developed by one of the authors of this article containing over 1.931 million patient-days of amino acid treatment in patients not suffering from Parkinson’s disease, objective results revealed optimal l-cysteine dosing was 4,500 mg per day. No objective changes were observed with the daily dosing values of l-cysteine at or below 2,250 mg per day and no additional response was seen in dosing values greater than 4,500 mg per day.10,13,14

Administration of proper levels of sulfur amino acids prevents depletion of all of the following: glutathione; the enzymes that catalyze amino acid precursors into monoamines; S-adenosylmethionine; and epinephrine.10,13,14

It is asserted that metabolism of toxins utilizes a large amount of sulfur amino acids in the form of glutathione each day. Administration of IV glutathione is analogous to temporarily plugging a hole in a bucket leaking sulfur amino acids. The effect of IV glutathione is a temporary band-aid approach, with sulfur amino acid levels returning to the previous state and a relapse of symptoms within one to two days of administration. A superior approach is the daily administration of proper levels of sulfur amino acids from the start of treatment so that sulfur amino acid depletion does not have to be further addressed.

bassofspades profile image
bassofspades in reply tobassofspades

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

Interesting read

parkie13 profile image
parkie13 in reply tobassofspades

Finally an explanation thank you. When I was on Marty Hines protocol I did not have the pain in my thigh. When I stopped it and went on sinemet CR it has started again after about 2 months. I will start taking Cys replete again. I had the same pain before I was diagnosed, had no idea what it was. Then I would take some manganese, not magnesium and that really helped to. I was scared of taking too much since that can promote Parkinson's. We all read about welders and manganese. I stopped Marty hinz protocol because I think I had an allergy to l-tyrosine, it made my blood pressure Sky High. Maybe it was that particular thatch of amino acid I don't know. Have you read anything about l-tyrosine sensitivity?

bassofspades profile image
bassofspades in reply toparkie13

Its not an allergy but it could cause hypertension

Bailey_Texas profile image
Bailey_Texas

Good morning shirleyb53

What kind of pain do you have. Is it normal pain like stabbing or aching or what i call Parkinson's pain. Pd pain is unlike any pain that i have had in my life. My legs have a got to go feeling or a have to move feeling along with a feeling in my bones that i call pain because i don't know what else to call it. If it is PD pain the C/L or Ropinirol (Requip) or a combination of them will help or completely relieve the pain.

shirleyb53 profile image
shirleyb53 in reply toBailey_Texas

Hi Bailey - you're right, the pain feels like it's in the bones and it's so bad it wakes me up. I'm already on C/L and requip. I find the pain so intense like no other pain I've had before.

Pauldmd profile image
Pauldmd

I have had exactly that pain for 28 years. It began years before I was diagnosed with PD. In fact the docs were so focused on the pain they ignored the other PD symptoms for almost 10 years. I finally had a spinal cord stimulator implanted last summer after years of being in opiates for the pain. It helped considerably. U an off all the opiates and manage with ibuprofen and an occasional muscle relaxant. The back pain was more debilitating than the PD.

mollybrowe profile image
mollybrowe

My husband does But the Nuro says it’s from his back not from Parkinson’s

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