Scary but a factual story

[Farooqji]

My Struggles Worsen Despite Natural Treatment Experimentation

parkinsonsnewstoday.com/201...

[alexask]

I think if she had joined this forum she may have had better results.

[park_bear in reply to alexask]

I agree. I sent her a note suggesting she join us.

[enjoysalud]

Sometimes one thinks one has Parkinson's, supported by a Neurologist or two......only to find out down the road it is NOT PD. Many neurological brain diseases exhibit similar symptoms DURING the first three years.

Check out JIM BOWER, Mayo clinic, on Youtube......MAKING A DIAGNOSIS OF PSP, CBD, OR MSA.

[park_bear in reply to enjoysalud]

mistaken comment deleted

[enjoysalud in reply to park_bear]

No, I meant what I wrote.

PSP, CBD, MSA, FTD, ALS, and CTE, are all PRIME OF LIFE BRAIN DISEASES. They produce TAU and not ALPHA-SYNUCLEIN. The first couple of years often MIS-diagnosed as Parkinson's. The Neuro "may " say ParkinSONISM (because in truth that DX needs to be given to allow time to go by). but more often than not a DX of Parkinson's is given. Dudley Moore died of PSP.

Read my post PARKINSON'S TO PSP.

[Hidden in reply to park_bear]

Not variants of Parkinson’s Disease but health issues that exhibit Parkinsonian symptoms.

[enjoysalud in reply to Hidden]

Thank you. You articulated much better what I was trying to communicate.

[nellie58 in reply to enjoysalud]

Isn't one way to check to try sinemet or similar and if you respond to the drug, then you have Parkinsons because other neurological disorders that present like Parkinsons do not respond? Is this true?

[enjoysalud in reply to nellie58]

This doesn't necessarily happen at the beginning of the DX, but as the disease continues the body does STOP responding to sinemet. My son did well with sinemet the first 6-8 months, then it started causing pain. I switched over to Zandopa, which helped....until it didn't.

[nellie58 in reply to enjoysalud]

My husband was lucky and go a good 15 or more years response to sinemet before it became erratic. I was more meaning if you have neurological symptoms, only Parkinsons responds to Sinemet. I remember when my husband was diagnosed the neurologist said if he responds well to sinemet then it confirms the diagnoses. This was in the mid 1990's. Is this still believed to be true?

[enjoysalud in reply to nellie58]

I am NOT and MD, but the mother of a son who was DX with PD in Jan of 2015. The DX was changed to PSP January of 2017. His neurological symptoms appeared March 2014.

Click on the circle next to my name. It will lead you to my posts. Scroll down and read PARKINSONS TO PSP.

My son died May 4, 2017.

[nellie58 in reply to enjoysalud]

I am sorry to hear that. 😟 I will look.

[Hidden in reply to enjoysalud]

The body does not stop responding to levodopa but rather the disease gets worse and the levodopa can only do so much to replace the missing dopamine. The body will always respond to the levodopa but the progression will outweigh the positive effects over time.

For the levodopa (dopamine) challenge, please see: ncbi.nlm.nih.gov/pmc/articl...

[enjoysalud in reply to nellie58]

Nellie58, I see that your husband has had PD for 15+ years...................the PRIME OF LIFE brain DISEASES usually show different symptomatic signs by third year or sooner.

[nellie58 in reply to enjoysalud]

.....but do they also respond to Sinemet or similar? Sorry, I do not think I understand what you mean. Are you suggesting this woman might not have Parkinsons at all but another neurological condition?

[rideabike in reply to enjoysalud]

I think I fit that description. Ovr three years now and most symptoms are much like hers and some are not. The difference is I tried L-Dopa in a natural form and now a year after starting I cannot go a day without it or life is unbearable and the fatigue debilitating. It's all the proof I need even though I have no physician support but I'm not wasting my life waiting for answers that aren't there at this time. Yes it's a "thorn in the flesh" for sure although I've seen much worse in others and so much courage. This site is a huge support, very fair and non judgemental. Kudos to all.

[Cons10s in reply to rideabike]

I’m in the same camp, using Mucuna and no pharmaceuticals. Mucuna and B1 have been a huge help but the biggest difference in reversing my symptoms has come from 3 hours a day of meditation. Not just any meditation. I urge you to, YouTube Dr. Joe Dispenza, it has changed my life and reversed the motor symptoms that B1 didn’t. B1 alleviated non motor symptoms for me. Now after 4 months of meditation practice my tremor is gone 98% of the time and my gait is normal 95% of the day. Life in general is normal, I do everything.

Learn how to “turn particle into wave, and matter into energy” . Change your brain by taking the mind out of your body eliminating the record of the past. It’s amazing!

You can do his Progressive Workshop from home, it’s 25 hours of training.

Next month I’m attending his advanced workshop in Cancun. His workshops sell out in a couple of days.

There’s nobody like this guy in the World.

Constance

[nellie58]

This is so sad to read this. I hope she joins this forum.

[Timetodance]

Thanks for the information, I will kept in mind what U have advised I wish U the best.

[condor39]

You did not mention Sinemet or Madopar or did I not read your long message carefully enough?

Why are you so willing to try untested methods of treatment, and ignore the proven ones ?

[moonsake10]

Sums up my days pretty much.

[Shaky-hand]

This could've been written by me as I have experienced the same scenario. I have been struggling with PD for nine years now and because medications did not work and gave me terrible side effects I've tried discovering what's available on the natural treatment path. The progression of the disease has been somewhat slow fortunately except for the past few months which for some reason the PD has progressed rather rapidly and I am struggling more with day to day living.

I hold out hope for stem cell treatment and believe that will be the solution one day in the future.

[sleezy]

I can relate to your problems with medicines. I have had bad side effects from some of the medicines prescribed to treat Parkinson's Disease. I have quit taking them after having side effects such as very low blood pressure, hallucinations and loss of balance. I would not have taken them to begin with if I had known what the potential side effects were. Best of luck with avoiding treatments that do more harm than good.

[amykp]

That article was written a year ago. Jean Mellano is a frequent contributor to Parkinson's News Today. She writes a lot of interesting stuff! She did go on meds. Here's another article: parkinsonsnewstoday.com/201...

But you can subscribe and read more of her!