Diagnosed with Parkinsonism Suggestive of PSP – Any Relation with GBCA accumulation in brain or with Cervical Myelopathy / Radiculopathy?

[BluesHealer]

• In November 2020, I was diagnosed with a Parkinsonism suggestive of PSP, with possible onset in 2018, being Freezing of Gait only on turns my complaint.

• In May 2017, I suffered a severe acute pancreatitis due to medication (Janumet, sitagliptin).

Started vigilance of pancreas with regular MRIs using Gadolinium-Based Contrast Administration (GBCA, is a ferromagnetic element, along with iron, cobalt and nickel).

From May 2017 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 (mainly in substantia nigra and globus pallidus).

May Gadolinium have any relation with my Parkinsonism?

• In November 2015, in spite of no symptoms or complaints, I decided to be submitted to an ACDF - Anterior Cervical Discectomy and Fusion surgery to a herniated disc, level C4-C5, with an area of myelomacia (decompressed, but that will stay there forever.

My fault, this was a WRONG DECISION: complaints started just after the surgery, increasing until today (neck and shoulder pain, neck stiffness, tingling in hands, difficulty in maintaining the correct postural position, unsteadiness...).

May these complaints mimic my Parkinsonism?

[Stephanielayell82]

My loved one was diagnosed with Parkinson's in 2015. Had hardly any symptoms. She then had a hysterectomy in 2017 and it has spiraled since then has been declining with the disease. 2019 went for further testing and they diagnosed her with PSP. So I believe it can progress the disease. Not proven by medical staff because here in the US they no little to nothing about the disease. Beat wishes to you!

[BluesHealer in reply to Stephanielayell82]

Thank you for your kind support, Stephanielayell82.I also feel that there may exist so many possible factors that may influence PSP onset and progression; unfortunately neurologists don't know much more than prescribing Sinemet... I'm not able to find a neurologist with an interest in investigating the causes and in studying more deeply my case. For this reason I'm willing to embark in some clinical trial, to offer my experience and maybe in this way helpping to develop knowledge about this terrible disease.

Best wishes to you, Stephanielayell82.

[Stephanielayell82 in reply to BluesHealer]

Yes it's a very rare disease and therefore I feel they only follow money in healthcare when it's a larger scale of people affected. Sad but i truly think that. I say no two days will be the same or no 2 people will have the exact journey with this.

[ConcernedEx]

First, “I'm so sorry for the path you’ve been on” - I don’t know much but I do know that my ex had neck Fushion surgery and after that surgery- we found they: cut his vocal cord & damaged his speaking and his PSP symptoms increased to the point of being diagnosed.

My only suggestion is “get another opinion!”

Get 3 opinions……seems no one truly knows how to deal with PSP/Parkinson’s (any neurological diseases) to the level that’s needed.

My heart hurts for you.

[BluesHealer in reply to ConcernedEx]

Hi! Mnay thanks for your recommendations. I´m with you! I'll kee looking for so many opinions as possible. In this way I'm also learning a lot about how to face the progression of the disease in my own case. For example, I had a consultation with a neuro-ophthalmologist that does'nt find any signs of PSP...Take care!

[Cade08]

I truly believe that the anesthesia given to my husband during surgery after a fall accelerated his PSP. I thought we had several more years with him, but he fell in October and died December 23rd. I was in shock at how fast he progressed after the surgery. My heart hurts for all that you are going through. I hate this disease.

[BluesHealer in reply to Cade08]

Thanks for your reply. I also believe that each case is a different one. This forum is an excellent one for collecting experiences and data for each one benefit and, moreover, to create clinical knowledge about the disease, and, therefore, helping to find treatement.I recommend to you all: take care if you need to have a MRI - AVOID GADOLINIUM CONTRAST!

[Alib2408]

So sorry to hear that you are dealing with this awful disease. My dad had mild undiagnosed symptoms before surgery in a December. Overnight his symptoms increased tenfold… he lost the ability to walk, talk, swallow and none of the team could understand why he deteriorated following surgery… a few weeks later they diagnosed Parkinson’s and then a couple of weeks after that changed the diagnosis to PSP. Have heard of another poor man who also has mild symptoms but fell and needed surgery on a break… again, symptoms hugely accelerated after surgery…there is definitely a link.

Also, my Dad has had many MRI scans in the past 15 years due to a brain tumour (which was successfully removed). He had annual scans…

[BluesHealer]

I recommend to you all: take care when having repeated MRI scans with gadolinium based contrast. The issue is controverse. BETTER SAFE THAN SORRY

[Jimjam22]

Hi there, This is all very interesting my story is very similar to Alib2408, my Mum had a knee replacement in December 2019 she had a couple of fall with her knee, no other symptoms, after the operation she became completely different, from February 2020 until August 2020 when she passed away, she did every symptom each month, she lost the ability to walk, talk, swallow, everything that goes with psp, very quickly, from being very active the months before her operation, I believe it was something to do with the anaesthetic, hopefuls helps, thank you for your efforts x

[BluesHealer in reply to Jimjam22]

PHi Jimjam22,You are right. Indeed I found in the internet sometime ago a study about possible Parkinsonism in relation with anaesthetic. We are all different and never know in what extent each one of us may be affected by external factors.

Thanks a lot.