Is anyone suspicious of Requip actually causing PSP?

[sally1117]

I have been watching my neighbor struggle with several diseases. The first was hydroencephalitis from which she fought back bravely. She was doing amazingly well after a shunt was implanted and extensive physical therapy. Now she has PSP and is not doing well. She is on sooo many medicines and I am suspicious of the side effects. She told me today that she began the medicine for RLS a year or so ago about the the time she developed the symptoms they call PSP.

[dorothy-thompson]

Hi Sally1117

I do not think that ANYTHING causes PSP, it's not like cancer, which can be caused by smoking, it's not like heart disease which can be caused by overweight or poor diet or stress or smoking, it is not like many hereditary diseases which are caused by bad lack or choosing the wrong parents, it is just one of those random cruel diseases that affect some and not others.

Dorothy thompson

[sally1117 in reply to dorothy-thompson]

Thank you for taking the time to respond, Dorothy.

Unfortunately this is what the doctors say when they don't know why and have reached the end of their pharmaceutical protocol. I think we have to NEVER stop questioning the medications people are taking or any other environmental chemical that inflames the brain. I guess i am attempting a casual survey here to see if anyone else's symptoms correlated with the use of Requip. That is all.

[Hidden]

Hi Sally

If we think about the fact that some neurological diseases like PSP actually "begin" some 10-25 years before symptoms appear, then any "cause" suggested (for example taking Requip) would have to occur a long time before. Remember that when symptoms do occur in diseases like Parkinson's (and PSP) there is already a certain area in the brain (substantia nigra) where 50-80% of the neurons have died.

Sometimes, events and medications can speed the progression of PSP, but never cause the disease.

When you said she had hydroencephalitis, I assume it may have been normal pressure hydrocephalus. This condition causes symptoms very similar to Parkinson's (and thus PSP), especially with balance. The RSL is usually associated with Parkinson's and not PSP. Not knowing the full medical picture, I can only suggest her doctors need to review her symptoms, condition and medications to make sure their diagnosis is the correct one.

[Hidden]

How nice of you to be interested in your neighbour's care. The first thing I would say is that as the cause/s of PSP are yet to be established, and diagnosis can generally only begin once the major symptoms show, we don't know when it starts. Being a degenerative and progressive brain disease it has to start a lot sooner than is noticeable and it does make the patient vulnerable to all sorts of strange illnesses and infections. It could possibly be that the PSP caused the hydrocephalus in your neighbour in the first place, so any treatment she received may be irrelevant to the outcome and consequent diagnosis. Until further research we don't know if it actually begins in a much younger person-after all some people are diagnosed in their 40s. Just as the disease takes a different course and speed in various people.The main thing is to help them to live as full a life as they can at each stage and get all the help they need.

You are a very kind neighbour and a blessing to your friend. xx

[ultramodern]

Sally1117 ...The all-knowing,all-seeing Strelly (I mean that nicely!) has again come in on the money ! His point that PSP sufferers have developed the disease way back would certainly tend to discount side effects from previous treatments.

Dorothy also backs this up in her message. so,OK ! PSP happens, end of conversation.

At one time my family and I were positive that a treatment for a misdiagnosed Rheumatoid Arthritis/Sjorgren had caused PSP in my brides case.Not so.

But the good news is ...thanks to PSPA whose raison d'étre is to find out how it arrives, plus what's more-- a treatment; we can all hope that in the not too far distant future we'll come thru' with some of the answers.

A thought for to-day----

And while I'm on the research subject...please don't forget that medical researchers need material to work with.

My late bride gifted her brain for PSP research....what better way to be remembered than to make this supreme donation to science..contact the PSPA Brain Bank...or one similar in whichever country you live .

bset,b.

[easterncedar]

My sweetheart was originally diagnosed with post Guillaume-Barre syndrome, based on his having been hospitalized 40 years ago with a high fever and temporary paralysis, which indicated a G-B response to a viral infection. His early psp symptoms included foot drop and muscle weakness on the formerly paralyzed side. His current neurologist dismisses the idea, basically because it's irrelevant to our current concerns, but we're not convinced that the psp isn't related to the earlier episode. There's no way to know. I have read that some researchers theorize that psp could be caused by a virus. I think it is reassuring for his children that there doesn't appear to be a hereditary component.

[cabbagecottage]

I first met my husband when he was Twenty I was 17 .

Even at the time He suffered with of a painful neck/shoulder on his right side , Had all sorts of physio and stretching etc none of it worked ,

He had a funny little kick with his for as he walked . although his work in an office and wrote endlessly his handwriting was very very small and difficult to read .

Apart from that he never had as much as a headache or took time away from work .

He and I considered him to be a very lucky man health wise .

I use to tell him he was mechanically dyslexic because his dexterity was so poor and he seemed to see things back to front . Fortunately I am pretty hands on and managed to do the things he found most difficult .

Nothing will persuade me that he hasn't had a form of Parkinson's in one way or another all his life . HE was born breach I wonder how many other were the same .

Apparently the midwife threw him to the bottom of the bed and said she though something was wrong , then got on with tending to his mother .

Well he did prove her wrong he is now 79 . and diagnosed EVENTUALLY AT THE AGE OF 70 .

Th

[cabbagecottage]

OF COURSE iWAS ONLY A BABY WHEN WE MET .lol lol .

[dge4795]

My symptoms were first noticed in 2009 when I began “freezing” while walking, and my handwriting became smaller and difficult to read. I had other symptoms before this just didn’t know what they were! I began Ropinirole (Requip) in 2010. I was then diagnosed with Atypical Parkinsonism, which was confirmed as PSP in 2013. I do not think it caused my PSP. I don’t think anything “caused” it. I agree with Strelley - it may have sped up the PSP but it did not cause it.

[jimandsharynp]

Wish it was that easy. This disease has been studied far and wide since it was discovered in the 1960s and still no known cause. I would think that would mean the cause is very complicated thus no known cause to this date.

Jimbo

[sally1117 in reply to jimandsharynp]

I have learned so much from everyone's comments and appreciate the caring responses. Your info about this collection of symptoms being named in the late 60's makes me wonder about environmental causes. I wish I had the time to see what insecticides were introduced into the food chain in that preceding decade. I would love to know how many avid gardeners have PSP.

[Macd]

My wife June was diagnosed with PSP in 2005 and had no experience with requip until 2011 when she had develop RLS. June passed away this past April and until the end had RLS under control with one tablet at bedtime.

Richard

[wifemo]

Hello, Sally - your neighbour is indeed lucky to have you looking out for her.

My late husband was eventually diagnosed with PSP after a few years of "it looks as though it's probably Parkinson's" but, looking back, I'm sure it had been developing for many, many years. Medications and trauma can accelerate progression but I agree with others that we just don't know what triggers it.

Take care, Mo.