> From: "Gary J. Cornwell" <[log in to unmask]> > Subject: PD Mysteries & Phenomena #2 Hi Janet It is good to hear your theory again . As I have said before I support you in your view that PD = lack of dopamine in the brain as simplistic and probably wrong > THE THEORY: (This is a repeat; I'm using it so everyone will know how > I'm thinking.) > > <P> > The commonly accepted theory about PD goes like this I believe: > > Eighty to one hundred % of PDer's brain cells that produce dopamine are dead > > which results in loss of dopamine that is shown on scans and the PD symptoms > > the patient had while living and loss of substantia nigra found in PD patients at autopsy. > > Surrounding this theory are many 'phenomena'. These 'phenomena'are actually known > > FACTS. They are categorized as 'phenomena' because although they are FACTS > > they do not FIT with the commonly accepted theory about PD, but rather seem > > to REFUTE, CONFLICT WITH, and CONTRADICT it. So since we hold this theory > > to be correct, they are classified as PHENOMENA and PARADOXES. > > They just don't fit, or rather we SHOULD SAY I think that the THEORY does > > NOT fit with the FACTS. It could loosely be like saying that if the shoe does > > not fit, the FOOT is the wrong size. There are a number of these ill-fitting FACTS. It is difficult to see how pallidotomy or DBS improves PD symptoms or why I have symptoms only on one side of my body using the conventional view . In fact the explanation that PD = lack of dopamine is strained in most PD phenomenon . The only thing that really supports this view is that autopsies show PD patients had less dopamine producing cells in their brains on average than people without PD . Even this evidence is inconclusive as one cannot say catergorically looking at brains in an autopsy which had PD and which did not. MY own view is coming around more and more to the position that the lack of dopamine producing cells is the result not the cause of PD . PD is a neural firing pattern that uses little dopamine so the dopamine producing cells atrophy ( die off from lack of use ). > > <P> > > My theory says, NOT, but RATHER that reduced blood supply to brain is the basic > > cause of my PD and that when blood flow is returned to normal, > > PD symptoms go away. I believe that the hypoperfusion of my brain > > is due to chronic sustained cervical (neck) muscle spasm (which > > is shown on my MRI and also I have a positive arterial Doppler > > on right while doing the Adson's maneuver) and that my neck muscle > > spasm is a result of allergic reactions (as in asthma/bronchospasm) > > and probably also because of overactivity of acetylcholine because > > of the reduced amount of dopamine in my brain. The reduced amount > > of dopamine I believe is from (1) the hypothalamus being faked out > > by detecting not enough adrenalin because the whole volume of > > blood getting through being reduced and therefore it signaling the adrenals to > > produce MORE, causing tremor, until there is a sufficient amount > > to 'break through' the muscle spasm, since adrenalin (epinephrine) > > is an antagonist to the effects of histamine on muscles, which results > > in a flood of adrenalin & dopamine (L-dopa which I take by mouth) to the brain > > which causes the body's own producer of dopamine, the substantia nigra > > to decrease and/or stop production and (2) The ischemia induced rise > > in histamine which may cause a 50-60% reduction in dopamine as well > > and the chain reactions that these occurrences initiate. (see past posts). > >One reason that I believe this is because I found I could make > all my Parkinsonian symptoms go away briefly simply by massaging my > neck muscles with a heat/massager while on NO medication. > > "Paradoxical kinesias" are referred to in about every book that I have read on > > Parkinsonism. In Dr. Duvoisin's "Parkinson's Disease - A Guide for Patient & > > Family" Raven Press copywrite 1991 it is discussed on page 37. (Third > > Edition). These occurences are neatly filed under "Phenomenon". (shouldn't > > happen given what we accept about the disease, but occurs so frequently we > > can't deny their existence so we just say, "beats me - I don't have any idea > > why it happens.") I dont mind the medical profession admitting they dont know the answer . What sticks in my throat is their inability to have an open mind on the cause of PD . In Oliver Sacks "Awakenings" he tells of the "silent room", > > where two almost totally motionless patients stayed. Suddenly one > > day the "silent room" erupted into a maelstorm and everyone rushed to > > the room to find the two patients up in the middle of the floor fist fighting. > > Afterwards they returned to their motionless, silent state for many more years. This is a trully excellent book by someone who has no preformed views on what he wiil find . HE is dealing with a condition that is called encephalitis lethargica . Recently I posted on this list the report of a QED programme where it was maintained that this encephalitis lethargica is still around today and can be cured using methylprednisolone in large doses . ( PUBMED author Blunt S will produce an abstract of this) . I believe that have an encephalitic form of PD ( see previous postings ) . I therfore resolved to try methylprednisolone in large quantities . To do this avoiding the battle with the medical profession that I could not guarantee of wining I recently took a trip to Mexico where medication can be bought over the counter without presription from a doctor . TReating the PD as a viral induced inflamation of the brain I started a course of treatment that included amantadine chloramphenicol and injecting 50 mg of methylprednisolone twice a day . I immediately lost the stiffness in my left side back and neck . My bradiskenisia on my left side ( no PD symptoms on the right side ) was over 50% better . After 3 days of this treatement I suddenly developed a bad cold/flu and was forced to discontinue when cold/flu would not go away ( like other corticosteroids methylpredisolone reduces the immune systems strength ) . All my pretrip symptoms have now returned bar my frozen shoulder and my left ear does not cause as much discomfort with changes in pressure . I brought the medications back home with me and am proceeding with trials at a much slower pace . Initial trial suggests that methylprednisolone reduces the severity of PD symptoms but is not a cure My next trial will be for longer tosee if symptoms can be permanently stopped . Methylprednisolone is a strong anti inflamatory drug and I have achieved the same effect although not so pronounced taking 3 aspirins at once . Further more a similar improvement is achieved with Diamox/Acetazolamide ( PUBMED author Cowen MA et al )(also in list archives ) . Diamox is used to relieve altitude sickness and hydrocephalus ( excess CSF pressure ).The latter squashes the brain and can give rise to PD symptoms . Tumours can have a similar effect . So at present I am running with the idea that MY PD is caused by a brain inflammation mainly on the left side . I was considering a few weeks ago how a physical effect squashing the brain coulf affect the the neural firing pattern . Your idea of obstructed blood flow to the brain is a good candidate . There is a strong linkage between blood flow and PD . The blood flow in the brain after pallidotomy is different than before . ( I am still waiting to hear if this is also true for DBS ) . But here the change neural firing pattern causes the chance in blood flow. The opposite could also be true. Conclusion . Early indications that treatement using methylprednissolone was very succesful . This will have to be repeated many times to eliminate the possibility of the placebo effect . There is also the problem of the side effects of using high dose methylprednisolone ( fluid retention .adrenal and immune suppression) . I am optimistic that these will not be too problematic because they did not appear to affect the treatement of MS with high doses of methylprednissolone ( PUBMED author Sellebjerg F ) . I will post my results when I have repeated the experiment enough times to convince myself it is not a placebo effect. Initially I assumed that the imfflammation was due to a viral infection . But I am not so sure now as Chloramphenicol and amantadine did not produce any positive effect . In fact at present I believe the latter caused me a lot of ill effects ( fluid retention ) and I am at present waiting to be sure this clears my body before starting any more experiments . system before trying any more experiments . A theory for PD is best if it can show why the different causes of PD produce a similar effect but more importantly , A CURE I am probably wrong in my accessment of PD but I think until someone using the conventional view of PD comes up with a cure it is necessary for alternative views to be aired and tried . peace Alastair ( [log in to unmask] )