did anyone have other symptoms prior to psp - PSP Association

PSP Association
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did anyone have other symptoms prior to psp


For approx. 10 years prior to psp Madeline was thought to have gout,rumotride arthritis, lupus ,by times a neck so stiff and very painful ,swelling of the knees so much she was not able to kneel nor get out of the bath, was treated for 6 years with celebrex and vioxx..it was taken off the market as an unsafe drug, once this psp horror came in those other things seem to go,I,d be interested to know,thank-you,Rollie

39 Replies

A very good question concerning overlap of syndromes. There is certainly going to be overlap of symptoms between PSP and other conditions since the number of symptoms in PSP is so wide and many can be quite non-spcecific (eg gait and walking difficulties) if you dont know the cause. In our case my wife has a wide range of pre-existing conditions, including bipolar disroder (24y) and allergic alveolitis (about 1 y) before a PSP diagnosis. There is small amount of research to investigate if bipolar, a CNS disorder leads to PSP, but inconclusive. The allergic alveolitis makes any aspiration pneumonia a lot worse. One of the first thinngs I was taught in pathology was that one thing leads to another. But is that really the case as we know PSP is a disorder of protein function, metabolism of protein and catabolism of protein (tau), which probably relates to gene regulation of this protein. RA is an autoimmune disease, allergic alveolitis is an immuno;logical dysfunction as well, and bipolar is neurotransmitter imbalance problem. But then the question is it the case that our loved ones have had multiple pieces of really bad luck, the odds being in the millions to one if you start adding the probabilities of each illness together. I cant tell but it really is an awful situation to end up in. God bless look after yourself


nomansland in reply to Hidden

my dear man...you are right,mayby there were problems from day one,and again maybe not,as an expert in pathology you would understand relationships ,some days I still think that if I dig deep enough I will find a way to get Madeline out of this mess,thank-you,Rollie

Hidden in reply to nomansland

keep going. I dont think Im much of an expert at all in the face of what has happened to us over the last 2-3y, best wishes jmbb

Dear Normansland

Harry was probably the most healthiest person I had ever known prior to PSP, he rarely caught a cold even, in fact the only thing of any significance heath wise was having his tonsils removed at around 26.

Kind regards

Dorothy T

thank-you Dot,I do hope you are well,love,Rollie

Getting there thanks Nomansland.

It is as others who have lost loved ones have said, that feeling of wandering around thinking I SHOULD be doing something right now, after the full on 24/7 caring role. And I don't just mean getting out and about, that will come, but rather that tick tock tick of jobs to do as a carer.

Kind regards

Dorothy T

Dorothy...I know the feeling,there are 10 things I started around the house but unable to finish anything as I have a monitor ,at times to go to the washroom to shower,nothing is ever organised ,most days are terrible,it must be real hard to get back on a road that is a bit closer to normal altho the normal we once knew will likely have to be replaced by a remanufactured normal.....time will help you up this other hill,pray for strength,love,Rollie

My husband had chronic ulcerative colitis, starting in 1977. He was hospitalised 4 times and given blood transfusions each time. Each time he went in he was found to be dangerously low in vitamins and minerals as the ulcerated bowel stopped these being absorbed. I have wondered if lack of essential nutrients over a long time had an effect on his brain, or the long term medication. For the last 10 years he seemed symptom free so stopped taking medication. He did the routine bowel cancer test 4 years ago and after tests, was found to have active ulcerative colitis (no noticeable symptoms), so is back on Asacol tabs, 400mg, six a day. Apart from the colitis (horrendous) he never had anything else wrong.

Nanna B

thank-you Nana,Rollie

Hello Rollie.

The same here as Dorothy. Hubby was never ill, in 45 yrs os marriage probably had 2 or 3 colds. Never took any medication, did a lot of sport and had an excellent diet.

There you are, this PSP does not follow any rules, which is probably one of the reasons it's so difficult to find a cure.


nomansland in reply to MaddyS

Hi Maddy....I guess I never accepted this crap illness and always second guess it,thinking it could be something related to those early years......I guess that is the only way I get to keep on going,thanks,love Rollie, PS does Maddy stand for Madeline...?

MaddyS in reply to nomansland


nomansland in reply to MaddyS

...beautiful name not often heard...!!!,Rollie

My mother was diagnosed with polymyalgia rheumatic and was treated with prednisone which tool almost two years to taper her off. She hated being on prednisone. Then she was diagnosed with parkinsonism and finally PSP. She was put on Sinemet which did have positive results initially and we struggled taking her off as we were worried it had more benefit than not.

No clues in advance of PSP. Good health until balance issues started. Only on BP medications nothing else. Jimbo

Just wondering how many patients diagnoses with PSP were prior smokers. Mike's neurologist asked me if he was a smoker and I told him he stopped ten years ago after smoking a pack or more a day for thirty five years.

My wife never smoked. If the cause were the simple it would be mentioned by neurologists everywhere. You have to remember that most of these diseases have an "incubation" period which begins even years ahead of the first symptoms. The disease has been known and studied since 1969 and if there were a simple cause I feel it would have surfaced by now. IMHO Jimbo

Hi Marion,Madeline never smoked either but maybe something could come out if these doctors look outside the envelope,love to you both,Rollie

I should read my message b4 sending !!..rheumatoid arthritis...not what I wrote

My husband has had a personality disorder for as long as I have known him. Lots of anger issues for no reason. Before being diagnosed with PSP, he was taking Abilify for his anger. It seemed to put him on the fast track for PSP. A psychologist felt that Ron was bipolar. Other than this, he was extremely healthy.

Wow, I know it sounds way weird but it s comforting to hear someone else has dealt with anger and personality disorders with PSP as not many report this as a symptom. I definitely think there is a correlation between the two. Even if it is just the fact that PSP seems to exacerbate any already present personality quirks/disorders. If I may ask, what is he taking now for the anger issues? Mine is taking a cocktail that does not seem to be having a significant effect at this point in time and maybe even making it worse. He has been having angry outbursts in public places severe enough to disturb people around us and even to be a cause for concern for security officers. It's to the point where I dread having to go anywhere with him anymore. The upside is now his doctors and therapists believe me. He used to be so calm and in their presence so they did not take my concerns seriously enough. Unfortunately I am still the one that is the target for his frustrations and angry outbursts. He has a habit of holding on to my fingers and hands and squeezing to the point where it feels like he is going to break them. Have you experienced any of this?

nomansland in reply to goldcap

He likely takes his frustration on his best friend....you do not deserve to get hurt,regards,Rollie

Also I am convinced there is a connection with taking statin drugs and developing CQ10 deficiency setting up conditions for PSP to be set in motion. Statins inhibit the liver's ability to produce CQ10. The brain needs CQ10 to function. So if you know anyone on statins, please tell them to take a CQ10 supplement if their doctor has neglected to do so. I recently brought this up with a cardiologist and she was stunned. Said absolutely could see the significance of doing so now but had never thought of it before and she prescribes statins all the time. This is becoming my personal crusade of sorts.

Christine47 in reply to goldcap

At one time a researcher at UCSD, Dr. Beatrice Golomb, conducted a Statins Effects Study. statineffects.com/info/. Also, Dr. Duane Graveline (Spacedoc.com) has a web site on this. You will find supporters of your theory on both sites.


Hi Christine,after 14 years I purchased CQ10...it can,t hurt,all the muscle pain I am having could finally be due to statins,I must live as long as Madeline,thank-you,Rollie

Hidden in reply to goldcap

I am very suspicious of statins. First of all, contrary to what millions of GPs try to tell you, namely that cholesterol can cause heart infarcts and strokes has been proven to be incorrect. It is inflammation that causes those problems. it is true that statins are powerful anti-inflammatory agents, but the kind of damage they can cause outweighs by far the benefits. And there are better anti-inflammatory agents available without these crippling side effects. It is shocking to find out that most doctors have no knowledge of biochemistry and therefore are blissfully unaware of the fact that statins block the mevalonate pathway and hence block the production of chemicals in your body that are critical for the functioning of your cells. The most common side effects that are well known are muscle pain, arthritis like symptoms, but the more nasty side effects are memory loss, irritations, aggressiveness peripheral neuropathy, etc.

The problem is that statins also block the productions of chemicals that are essential for the brain, such as yes, cholesterol produced in the brain, coenzyme Q10, dolicols, etc.

Statins work as reductase inhibitors. Unfortunately the only reducatase step in the odd 200 steps in the production of cholesterol is right at the beginning of the mevalonate pathway and therefore blocks the production of many other chemicals that make use of the mevalonate pathway. GPs are mostly totally unaware of this fact.

And those side effects are not always immediately noticeable, so it can take some time before the expect? And of course they are dosage related as well. They higher the dose rate, the sooner the symptoms may start. It may take months, sometimes many years. I myself had arthritis symptoms and was prescribed anti-inflammatory drugs (how funny, if one considers the powerful anti-inflammatory effects of statins!). When I asked how long I would have to take them I was told for the rest of your life. I was unfortunately developing arthritis and there was no cure for it. Well I stopped taking statins and within 14 days all symptoms had disappeared and have never come back. So much for getting old!! I was lucky that I did not take statins for more than 3 months and that this symptom was fortunately reversible. Unfortunately neural damage is mostly irreversible.

Hi goldcap...good question,I myself have been on statins since 2000,I had a heart valve replaced with a cow-part,funny,we reject human valves but old moo-moo-saved my life...I must look into CQ10,thanks,Rollie


My husband had the same thing happen .He was fit as a fiddle , We met when he was 20 and he had painful shoulder even at that time .Could never get to the bottom of it . He also gave a little extra kick when walking .

cabbagecottage,one must wonder if the solution could lie elsewhere other than in the stages of psp....regards and thank-you Rollie

nomansland in reply to shasha

Thank-you for answering,best regards,Rollie

Hidden in reply to shasha

Falls are typical symptoms of PSP and CBD. The same for stiff shoulders and tight muscles, e.g. hamstring and quads. Falls can make matters worse by causing misalignment of hips and pelvis. So it is important to check out if that has happened due to falls. Secondly it is very beneficial to get sports massage each week to reduce the stiffness in the shoulders, neck and legs. My wife developed severe pain in her right leg and when checked out had her pelvis and hips misaligned. When this was corrected, the pain did not automatically disappear. Reason being that first of all the muscles can pull your hips again out of alignment and of course it takes time for the muscles to get used to the fact that there are again in the right position. Any sports coach will tell you. And that goes also for able bodies sports people that are checked at least once per year for misalignment and they of course also get regularly sports massage. It took 3 months before we saw the benefits, and in the meantime my wife had to take massive amounts of pain killer. Now she is completely off it and we keep the muscle situation in check by regular treatment.

Yes, my late husband had CBD and for years until his death complained of a stiff neck. He had swelling in his ankles and legs. I don't know if this is part of the disease or just a precursor to it. The leg swelling eventually went away but the stiff neck never did.

dear dragonlady,same with Madeline...the leg pain seems to be gone but the neck is as ridged as a piece of wood...makes one wonder,thank-you, Rollie

Bonjour Rollie,sorry for late reply but like Madeline my late bride ,Jo, was also diagnosed with Rheumatoid Arthritis and Sjrogen' s(Dry eye Syndrome) The RA was later de-dianosed. Then Ataxia walking and balance disorder.Then a possible Parkinsons.later ruled out. But a Parkinson Plus was thought about. Then the eye problems..treated in isolation from the rest. She was taking the same treatment as Madeline. Plus Methotrexate and Plaquenil....used in cancer treatments(?) which sure made her worseeach time she had the injection.

talk about the Sorcerers Apprentice Syndrome of giving anything for everything regardless!

All the while PSP was making inroads into her functions and after a five years earch finally got a true diagnosis.

Best to you and Madeline.


Good to hear from you Brian...at one point Madeline was given nitoman..regardless of anything, that was also a poor shot in the dark,hope to hear from you again,best regards,Rollie


I think that one thing that is missing in the research into PSP, CBD, Parkinson, Alzheimers, etd is the questions if there is any relationship between medication taken over a long period of time, at high dose rates and the onset of the neurological conditions. One particular medication springs to mind: statins. The inference and blockage of critical biochemical processes cannot go unpunished. In particular if they can affect the brain like statins. And once the damage is done, it is irreversible.

After reading all the replies to this question, my Dad, now 79 and recently Dx w/PSP, was born with a heart "condition" and almost 20 years ago had a heart attack and surgery and has been on statins ever since, I'm pretty sure about the statins and will double-check later. Also I remember even when I was a kid and he was in his early 30's he'd occasionally have an achy shoulder, said it was bursitis but I'm not sure if he ever went to a doctor for it because it always eventually went away. I remember he'd rotate his shoulder, like it was stiff and he was trying to loosen it up. Before PSP when he walked, he looked completely normal, had a walk of his own as we all do I suppose, but in retrospect, he walked with legs a little more stuff than most people, with not much bending of the knees. He hardly ever got sick even with colds, and he did smoke 4 packs a day for about 25 years and has been quit for close to 40 years.

Hi, my mother had issues with urinary frequency and arthritic pains in her feet but was otherwise very healthy. She walked every day but never very athletic. The first sign however that I can recall that highlighted any cognitive decline was her swollen ankles and lower legs. No explanation from the doctor they didn’t even pick up on the possible link to Parkinsonian symptoms. It was the start of all the visible changes. We then struggled to have her diagnosed, having to wait nearly six months before we could see a neurologist who said she had early stages of Parkinson’s and early stages of Alzheimer’s. The swelling subsided but I could feel parts of her body inflamed. Her decline however was too fast to fit with a Parkinson’s diagnosis and so we pushed to have additional opinions and she was recently (Nov 19’ ) diagnosed with PSP. We took her overseas for a family trip thinking it would help, big mistake. She became very dependent and a little confused. We returned home however she is no longer able to stay home alone even for a little while like before and now needs 24/7 care. Every now and then we notice the swelling come back without any obvious reason and it appears to represent a milestone change to another level of the disease along with inflammation that I can feel through heat warmth on the body. Not sure if I’m reading too much into it, but hope it helps.

My best wishes to everyone suffering, and to all the wonderful carers out there.

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