PSP “ offered”me one-day lull - just one day!

[BluesHealer]

Hi, Everyone!Some weeks ago I wake up in the morning without feeling any of the symptoms of PSP. No freezing of gait, nothing. I felt myself a completely new person, the way I was when Many years before. Unfortunately this event only last for one single day. I will speak about this next consultations with my neurologist, next month. Does anyone of you experienced such a situation? What might be a possible explanation for this event? I’m not taking any medication from beginning of January (I suspended Sinemet and Amantadine). Many thanks for your help and support.

[easterncedar]

Dear BlueHealer, I can’t explain it, but my guy had several surprising good days when it seemed as if some symptoms had reversed. It was such a gift when it happened. I hope you have many more.

May I ask how long ago you experienced your first symptoms?

[BluesHealer in reply to easterncedar]

many thanks for your interest. It’s a long history. Please allow me to paste it here: “* In Nov 2020, diagnosed with a Parkinsonism suggestive of PSP - Progressive Supranuclear Palsy, with possible onset in 2018, being Freezing of Gait only on turns my complaint. * In May 2017, severe acute pancreatitis due to medication: Started vigilance of pancreas with MRIs using Gadolinium-Based Contrast Administration (GBCA). Up to September 2019, I was submitted to SIX MRI with GBCA! I found in the Internet that Gadolinium may stay retained in the brain! May Gadolinium have any relation with my Parkinsonism? * In November 2015, decided to be submitted to an ACDF - Anterior Cervical Discectomy and Fusion surgery to an herniated disc C4-C5, with an area of myelomacia, without any complaints! WRONG DECISION: complaints started just after surgery, increasing up today: neck and shoulder pain, neck stiffness, tinglings in hands.” So I felt my first symptoms by the beginning of 2020 (freezing of gait when turning) and I had the consultation with the neurologist in November the same year (when I get the PSP diagnose). Based in some previous MRI he assured me that the onset of the disease should have take place in 2018. From 2020 up to today freezing get worst but occurs when turning. Today I’m still wondering about wether or not some gadolinium retention in 2018 may be responsible for the onset of the disease.

Kind regards for your interest in my case.

[easterncedar in reply to BluesHealer]

Hmm. That’s all very interesting, I am sorry you are going through this. It’s very different from what my partner experienced. His diagnosis was very swift and definitive. I tried to study all I could, but he had a good specialist and I am sure he had the best information. I have always wondered whether an acute viral attack from his 30s wasn’t the cause.

[Purrlie in reply to easterncedar]

Hello easterncedar, I was very interested in your comment about your partner's acute viral attack when he was in his thirties. My husband experienced a pretty severe viral labyrinthitis when he was in his early forties. I remember seeing a mention of that by someone else a year or so ago. He also ground his teeth a lot (I forget the clinical term) for years, before any other PSP symptoms were noticeable, and I think that has been mentioned by others here too. All best wishes, Purrlie

[BluesHealer in reply to Purrlie]

hi, Purrlie and easterncedar. I’ve got myself also very interested in your comments about virus attacks. Also myself suffered many years ago a virus attack - during a regular check up was found by casualty the HVC in a blood test - it cleared by itself andnever more appeared in subsequent blood tests up today. But we never know what virus are able to do... I was submitted to a special (nuclear ?) examination which demonstrated that the virus has been here, but left no traces of it up today.

[Troubleandstrife]

while my husband couldn’t express the experience like you have here, I believe that’s what happened to him one day when he began talking clearly and walking swiftly and initiating conversation and engaging with all of us for almost two days, then the magic moment passed and he was back to being almost mute. It was incredible and confusing. And I wish I had written down everything he said.

[BluesHealer in reply to Troubleandstrife]

many thanks Troubleandstrife for sharing your husband’s experience so similar to mine. What could be an explanation for such a experience? In my case I think that may be some neurons stay intact and/ or it could have taken place a surge of dopamine, specially because I’m not responsive to Sinemet or Amantadine. On the other hand there are so many different PSP phenotypes. During 2nd opinion consultation with a distinct neurologist, I was told that my PSP should be what he called a “benign PSP” - today I tend to beloved that could be a possibility, or may be a PSP- PAGF phenotype (pure akinesia with gait freezing, specially bearing in mind that I’m not responsive neither to Sinemet or Amantadine. On the other hand my FoG (freezing of gait) only is present in rotations (when I turn) and takes place ALWAYS without ON - OFF status. Thank you again for sharing your opinions

[BluesHealer]

Please help me to find out what stack may have stopped my PSP for one day

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I have a listing with all the supplements I'm taking (or that I have taken at a certain point in time) that I´m willing to share with all of you, for your information, and for you to kindly offer any queues about what may have done eventually any good to my condition.

It is a listing containing manufacturer’s and supplier’s names so I believe that I shall not display the listing here at the forum, but I will be able to supply it by email as per your requests. Further to the posology of each supplement that I use for myself, it contains references to guidance sources. It contains some text in Portuguese (like “almoco” for lunch time, “jantar” for dinner time, but I believe that you will be able to understand in context).

Please help me to find out what stack may have stopped my PSP for one day! I can’t find a answer for this episode, but I’m sure that we need to find a justification! Please help me and other sufferers to find their stack of nutrients.

Please don’t hesitate to contact me by e-mail. I will do my best to answer to all your questions.

Kind regards.

[Delaraysbest]

why did you stop taking Sinemet and Amantadine. I currently take both and I have never experienced on or off times! My most prominent symptom is FOG, no tremors. I asked the doctor if I should get off of these given that I have not seen much benefit! Thoughts