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AndrewE

Could PD be an autoimmune response?

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AndrewE    2

I'm 58 years old, diagnosed with Diabetes Type 1 and Hashimoto in 2008, was diagnosed with PD 2 months ago and ramped up Sinemet.  A tremor from two years prior was diagnosed as psychogenic by my first neurologist and my new one as the start of PD two months ago.  Great fun!!  All the trembling in my left hand disappeared until about two weeks ago.  It started again just before my dose at noon and now starts as soon as I get out of bed.  The dose at noon calms things down a bit but it's all getting worse.  I'll see my Neurologist tomorrow to either increase the dosage or figure out what's going on.  BTW with the anti depressives, Remeron 15mg at night and in the morning as well as Cymbalta 60 mg once/day in the morning, my brain is full of serotonin, the Sinemet adds on top a flood of dopamine and levodopa. In addition, my synthroid dose was just lowered as my TSH was too high and my BS levels have been all over the place.  Are there any further questions I should ask my doctor tomorrow?  My psychiatrist told me on Friday that the Sinemet may be effecting my inhibitions and that I should be careful with putting myself at risk.  I'm kind of lost here.

 

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MurrayPD2    219

I am lost how the title question ties with the comments.  Have you verified PD in a DatScan?  You may be experiencing off periods or stress causing more symptoms.  Sounds like something to discuss with a Neurologist that is PD experienced or even better, a Movement Disorder Specialist (MDS).

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AndrewE    2

Well, given that I already have two autoimmune diseases, a third one could be possible.  I have looked the subject up on the internet and the PD process is apparently relatively similar to the body's attack of the insulin producing Beta cells of the pancreas.  Dopamine is a protein, as is insulin, and an attack of the latter (producing Beta cells in the pancreas) may partially explain the attack of the former (Dopamine production in the substantia nigra).  BTW my neurologist is fully versed and trained in PD.  I'm just looking for answers MurrayPD2, not judgemental comments.  

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AndrewE    2

DaTscan is apparently not that reliable.  The last MRI of my brain showed nothing but my neurologist said I would have to have one done in Lausanne to have a more molecular view of a start down the route of PD.  All I care about, as does he, that the Sinemet works.  Essential tremor would not react to dopamine.  

"The short answer is that the DaT test is over-used in clinical practice, and is only FDA approved to distinguish potential Parkinson’s disease from essential tremor. In fact, the test only tells the clinician if there is an abnormality in the dopamine transporter, and does not actually diagnose Parkinson’s disease (could be parkinsonism). PET is also overused, though it can be a more powerful diagnostic tool when in the right expert hands.

If you have already received a diagnosis from an expert, and are responding well to dopaminergic therapy, in most cases of Parkinson’s disease, PET and DaT scans would not add any new information, and may prove unnecessary. In cases where the expert is not sure of the diagnosis – is it essential tremor or Parkinson’s, for example-- or where a potentially risky procedure is being considered (e.g. deep brain stimulation surgery), it is reasonable for your doctor to recommend a PETscan or DaTscan. It is important to keep in mind that PET and DaT scans should be performed only by experienced neurologists who have executed a large volume of Parkinson’s disease scans, because experience is important in accurately reading the imaging results. One important update is that DAT scans can and have been misread since the FDA approval in 2011. The reason DAT scans can be misread is because the interpretation is performed entirely by the eye (there are no hard numbers to make the diagnosis). This type of “qualitative” interpretation is subject to error. We always recommend that the interpretation be performed in the context of the clinical symptoms of the patient, and when in doubt to get a second opinion from a Parkinson’s expert."

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MurrayPD2    219

"Well, given that I already have two autoimmune diseases, a third one could be possible.  I have looked the subject up on the internet and the PD process is apparently relatively similar to the body's attack of the insulin producing Beta cells of the pancreas.  Dopamine is a protein, as is insulin, and an attack of the latter (producing Beta cells in the pancreas) may partially explain the attack of the former (Dopamine production in the substantia nigra).  BTW my neurologist is fully versed and trained in PD.  I'm just looking for answers MurrayPD2, not judgemental comments.  "

 

 

Thanks for the clarification. Now I understand  what you meant.  I am in no way judging you.   I don't see how I was ???

Edited by MurrayPD2
Misqouted

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Lonnise    60

Interesting thought - PD being an autoimmune response.  My DH has managed Birdshot Chorioretinitis (birdshot inflammation of the retina) for the last 10 years and this is a known autoimmune disease that happens to attack the retina.  Our eye specialist is renown for her work with this disease and practices at Johns Hopkins where we are now also now "members" of the movement disorders specialty group.  (we should qualify for "group discounts" - ha!).

Neither specialist (Thorne the ophthalmologist, nor Mari, the MDS) suggested that either disease was related to the other, but it still makes us curious.  Luckily the meds for each condition (so far) don't conflict with one another.

Good luck with your journey.

LHG

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lbonifas    1

I have been reading a lot lately about the human gut biome and how many autoimmune diseases actually start in the gut, particularly Hashimoto.   Recently have been reading that this may be the case with PD.    Definitely following this.   

 

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Lonnise    60

Thanks for the article otolorin.  The concept makes logical sense to me but I'm not a trained scientist.  Hopefully this helps lead to practical treatments that can slow progression if not stop it similar to the way we have other autoimmune attacks.  DH has successfully postponed progression of his Chorioretinitis for over 10 years, to hope we could do the same for PD is uplifting.  I realize this is "brand new" thinking and our medical system can't respond as quickly, but still...

 

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otolorin    30

Hi Lonnise,

you are welcome.Let's hope the system can respond as quickly as we desire.The whole system is slow,I hope they address the pressing needs of all citizens,instead of worrying too much about Russia.Excuse my political tone.

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