I think I might have PSP

[somerandomperson]

Hi everyone

This is my first post in the forum. I wanted to hear from people with PSP, as I believe I might have it.

In April 2017 immediately after a week of lower back pain I started experiencing several symptoms, including feeling off-balance, pins and needles, missing letters when typing, muscle twitches and jerks on and off all over, bee-sting sensations, tiredness, bloodshot eyes, difficulty opening eyelids after sleeping. This led to a lot of worry and hence I stopped doing a lot of the activities I had previously enjoyed doing. The symptoms would vary over the following few weeks and then almost disappeared for a few weeks between June and August. Then, after another week or so of lower back pain, some but not all of the symptoms reappeared, with the jerks worse than before. In October I started to experience a constant high pitched whine in my ears/head that, curiously, would worsen if I stuck my jaw out.

I eventually saw a neurologist in December and I was diagnosed with a functional disorder. I read stories of patients with functional disorders but none of them seemed to match what I was experiencing. While searching online I stumbled across a page on FTD and PSP, and saw that the list of symptoms were a much closer match to what I had been experiencing. From then on I have been more or less convinced that I have PSP or something like it. I wrote to the neurologist with my concerns but did not get a reply.

I had an MRI done in January which came back with no significant anomalies other than some neck wear and tear, but I had read that early stage PSP would not likely show on an MRI scan anyway.

Since then my balance (which has been by far the most concerning symptom for me) has worsened, especially in the past week, again preceded by lower back pain, and also some upper back pain this time. If my balance continues to worsen then I think it won't be long before I start to fall. I'd be very interested to hear about how other peoples balance problems have manifested themselves. For me, I am always looking to hold on to things or lean against any table, wall, door frame that happens to be there because I just don't feel comfortable standing with no support, and my ability to stand for any length of time has gradually worsened over the past few months. I now try to plan my activities and avoid anything that would involve long periods of standing, e.g. sports events or waiting in queues. Recently I have also found myself leaning one way or another when seated, even though I do not feel particularly unbalanced. I think my speech is now also slightly affected, with some slurring of certain words with sounds like "sh", "s", "f". The tinnitus has been continuous since it started about ten months ago. I don't always notice it, but I can share confirm it is still there by sticking my jaw out, which makes it much louder.

Any thoughts or feedback would be very welcome.

Thanks very much for your time.

[NannaB]

Hi, I’m sorry you are having problems. I don’t have PSP but my husband did. You say you have noticed symptoms. My husband never noticed things others did. He fell backwards regularly but never knew he was going to fall, he never felt off balance, he just went. He never tried to stop himself falling so fell relaxed. I was told PSP often effects the area of the brain that developes later in young adults which stops youngsters from being cautious, getting them into dangerous situations. My husband wasn’t aware he may fall like you are and did much to put himself in danger, falling backwards into a pond and paddling pool and through the glass in a greenhouse to name just a few. I hope you being aware means you don’t have PSP. He had plenty of head cuts and bruises but never broke any bones. He never had tinnitus, however I have lived with it for many years and on a few occasions have felt giddy. It also sounds louder if I jut my lower jaw forwards, so I don’t do that any more. My husband never had back pain. Have other people noticed anything? Many people noticed changes in my husband which he didn’t know had happened so refused to see the GP. For two years he said there was nothing wrong. On occasions when he phoned me at work and it was answered by my colleagues, they all asked me if he had been drinking. I would ask family and friends without telling them what you have noticed and see what they say. If they have, write it down, or get them to so you have something to take to the GP next time you go. I hope you hear from others with PSP who will be able to tell you how they feel.

There is obviously something going on and I hope it isn’t PSP.

Very best wishes.

XxxX

[somerandomperson in reply to NannaB]

Many thanks for your reply, NannaB. That is very interesting. I am sorry to hear that your husband had PSP. Regarding anyone noticing, I think in my case it is the opposite as I've been aware of symptoms for over a year but I'm pretty sure nobody else has noticed any physical symptoms. I am sure some people will think it odd that I just all of a sudden quit cycling (after previously cycling over 200 mikes a week) and pretty much stopped socializing, but as for the balance issues and the other symptoms, they have been relatively mild. Initially I would feel off-balance without ever actually wobbling, stumbling or falling. More recently, though, I have been feeling more "wobbly". Once again, thank you very much for taking the time to reply.

Kind regards

[npcc_102]

Hi there! I am sorry to hear about your symptoms. I do not have PSP, but my father did. Similar to what NannaB has described, he would often fall backwards, which is one of the more distinct traits of the condition. And if he fell, he could not catch himself and all of his weight went into the fall - injuring himself with cuts, bruises and broken bones. He could not manage the weight when standing to sitting either - sort of falling into his seat.

I am not a medical professional, but am wondering if you might have had your B12 levels checked recently. A B12 deficiency can cause similar neurological symptoms that you are describing, including balance issues, tinnitus, pain, pins and needles, just to name a few.

The Pernicious Anemia Society has a forum here and their website has a lot of information. Sometimes neurologists may not consider B12 deficiency, but if you have a good GP, you might be able to get some tests done to rule it out if you haven't already done so.

Here is the PAS website regarding the symptoms of PA/B12 deficiency: pernicious-anaemia-society....

To clarify, you could have a B12 deficiency without PA - for example, some may have a deficiency due to their diet. I find the PAS website to be a great and reliable source of information.

I understand how scary neurological symptoms can be and how isolated it can make you feel. I hope you feel better and get some answers soon! Wishing you all the best!

[somerandomperson in reply to npcc_102]

Many thanks for your reply npc0823. I had a number of blood tests done last year after the symptoms first appeared and all of them came back fine. I'm almost sure vitamin B12 was one of them, but thanks for the suggestion. I've come to realize that things are rarely straightforward when it comes to diagnosing neurological conditions!

[somerandomperson in reply to npcc_102]

Hello again npc0823

I have been reading about vitamin B12 deficiency (since reading your reply) and it seems that a normal test, even with a high level, doesn't necessarily rule out deficiency, and reading forums where sufferers have described their symptoms I would say that every single one of the many varied physical symptoms I have had is mentioned at least once. I am going to discuss this with my GP to see what he thinks.

Again, thank you so much for your input. If it does turn out to be a B12 deficiency and something can be done then obviously I'd be over the moon to say the least, and it would be all thanks to you!! I don't want to count my chickens just yet but I will keep you updated, if you're interested.

Kind regards

[npcc_102 in reply to somerandomperson]

Hi there!

Thank you so much for the reply!

Yes, once a deficiency has been identified (meaning before you supplement - using oral supplements or injections) the blood tests after you begin treatment are no longer reliable. I was diagnosed with a B12 deficiency and PA last year (I am in the US) and after taking large quantities of oral B12 supplements a day, my total serum is technically in the normal range, but I am still having symptoms (including neurological). All of the doctors say that because my blood is “normal”, then my symptoms are not due to a B12 problem but they also don’t understand the complications that can happen at a cellular level. It does get a little too scientific for me, but if you have a good team of doctors who understand that about B12 then you have a great advantage. For neurological symptoms, I have heard that it is recommended to do injections (although none of my doctors have done that for me and could be why I’m still symptomatic, but who knows).

I am glad my mentioning it and your additional research is helping and hopefully if you follow up with your doctor about it you get some answers. I would be interested to hear how it goes and what you uncover. I just hope you get the answers you deserve and feel better as soon as possible!

[Kevin_1]

Hi somerandomperson

I'm sorry you are struggling and it must be scary.

The good news... What you describe does not fit PSP early stages, nor the other closely related illnesses form Alzheimer's through to MSA.

Stick with the neurologist. They have good tools to detect neurological disorders.

Did you have a scan? They do detect brain deterioration at quite and early stage, though it's not always so clearly diagnostic of the particular disorder in the early stages.

Monitor your symptoms, keep a diary of them, exercise and take vitamins. This sounds trite, but it clears the field a lot.

If you are heavily stressed - take steps to reduce that.

Wishing you the best.

Kevin

[somerandomperson in reply to Kevin_1]

I just wanted to ask, Kevin - why do you say that it does not fit PSP early stages?

Many thanks

[Kevin_1 in reply to somerandomperson]

Hi

No problem, but please remember that comment was merely a comment. I avoid getting anywhere near online diagnosis for obvious reasons.

Everyone is a little different with regard to symptoms and disease development.

However, I understand, slow saccades and falls, usually backwards, tend to be the first symptoms, often slight personality changes with issues of apathy, or agitation. Another early symptom is often gait change. Sitting in a neurology clinic waiting room it almost possible to diagnose PSP as folk walk in. After a lot of tests our first neurologist showed us a video of someone walking who had early stages of PSP. He said delightedly that he was almost sure the second my wife walked into the room, but that he needed to do the tests to be certain.

This is a good description of the illness.

youtube.com/watch?v=-Plhyzs...(Not working as expected?)

And here is a video demonstrating some core symptoms

youtube.com/watch?v=BPt3pTz...(Not working as expected?)

Here is a list. I hope it's helpful.

nhs.uk/conditions/progressi...

I do hope your symptoms end up being a blip, but do keep a notebook of what where and when.

Best to you

Kevin

[somerandomperson in reply to Kevin_1]

Yes, of course, Kevin. I promise I won't sue you, lol. Many thanks for taking the time to reply.

Kind regards

[Kevin_1 in reply to somerandomperson]

Chuckles, no I'm more worried about making mistakes and misleading people.

But its's good to know my piggy bank is safe.

Sorry - I've just re-edited my post above adding what I hope will be more helpful links.

Best to you.

[somerandomperson]

Hi Kevin

Thank you so much for taking the time to reply. Yes, I had an MRI scan done in January which came back normal. Like you say, I should probably have more faith in the medical professionals. Thanks for the advice.

Kind regards

[Kevin_1 in reply to somerandomperson]

I wish you well with this - I had a neurological scare recently... damned scary!

And we're talking about symptoms far more dramatic tha those you are reporting.

With my Liz we started seeing things going wrong little by little. It took a year for the symptoms to form a picture.

My scare was just a systems wobble... thanks goodness.

Wishing you well.

Warmly

Kevin

[honjen43]

Hi somerandomperson! You have found a site here (Healthunlocked) that will give you good honest feedback.

Keep looking for those answers! It is your wellbeing and your future.

I hope in time you will get answers from a neurologist or other specialist that give you a full picture that helps you manage your health.

Meantime, be assured you will NOT be some random person here! Stay with us and keep us posted, and whatever develops, you will find support here from all over the World!

Hugs

Jen xxx

[Motts]

Hi Somerandomperson - You are getting good advice here.

I just want to add one thing - get a cane to help with your balance issues for now and don't be embarrassed to use it. There are many nice ones on the market or maybe a nice walking stick would be more your style.

Sending you hugs and best wishes - Granni B

[LuisRodicioRodicio]

Hi somerandomperson!

In addition to the sensible and wise considerations of my chat partners, it may be useful for you a compile PSP symptoms that I have been gathering from published articles, comments in this chat and our own experiences. It was sent to you by private internal mail.

I hope that as in the case of Kevin you symptoms are a temporary and controllable episode.

Hugs and luck.

Luis

[Bereaved2017]

Hey there and wow, I know you must be so afraid to think you could have the dreaded PSP. My Daddy had it and I was one of his fulltime caretakers for 2 years. I agree with those who said, your symptoms do NOT sound like it to me either which I say with GREAT JOY for you! I mean, Daddy never had a backache, nor tinnitus (which I have had as long as I can remember but it's not very loud,) Daddy never mentioned tingling or any of your symptoms. Like was said already, he didn't know he was about to fall. I asked once and he said, he'd be walking and suddenly find himself on the ground/floor but he didn't fall "relaxed" like someone said. PSP stiffens the body more and more over time and my dad fell STIFF BODIED, and because he wasn't even aware he was falling, his hands didn't reach out to break his fall and his knees didn't even BEND to make the fall more gentle. His very first symptom and it's the first for many... was double vision. Dear lady, (I think you're a lady not a man?) bless your heart, I can't imagine what's ailing you but I truly don't think it's PSP, hallelujah thank you Lord!!!!! Please let us know how you're doing and what you find out. Prayer said for you. As Granni B suggested, use a cane, you can't be too careful with your sweet self!

[somerandomperson in reply to Bereaved2017]

Hi Bereaved2017

Thank you so much for taking the time to reply. I am so sorry to hear about your dad.

I am actually male (48 years old) but I guess I must write in a female style, whatever that is lol! Anyway, none taken

It's very interesting that most people who replied don't relate my symptoms to those they have seen in PSP, which gives me cause for hope. I am now going to discuss with my GP whether my symptoms could be caused by a B12 deficiency, even though the blood test was normal - I have since found out that B12 tests can be false normal or even false high.

Best wishes

[racinlady]

One little added note. My husband who has had PSP for about 5 years now never has complained of pain except from his injuries from his numerous falls. I, too, would suggest trying to reduce stressors as much as possible and sticking with your neurologist or possibly a second neurological opinion.

[somerandomperson in reply to racinlady]

Hi racinlady

Thank you so much for taking the time to reply. That's great advice, thank you.

Kind regards

[margh2468]

Hi there, I agree with most of the posts here, in that, it doesn't read like P.S.P. My Hubby had it for 8 plus years, and early symptoms were change in personality, backward falls, pretty much the same as what Kevin has experienced with his wife. Cheers and good luck with a diagnosis, certainly hope it is NOT P.S.P. it is such a cruel, life robbing illness, I wouldn't wish upon anyone, Cheers Marg Howlong N.S.W. Australia

[somerandomperson in reply to margh2468]

Many thanks for your reply, Marg. I have also experienced several behavioural changes, including apathy, withdrawal, impulsiveness, so I'm wondering if what I have might be more consistent with FTD, specifically bvFTD.

[Hidden in reply to somerandomperson]

Do you still have the FTD symptoms ?