Wondering What an "Early Stage" of PSP Looks/Feels Like

Woman of 68 years new to this forum.....I've seen two neurologists who said I don't have PD but said neck pain was maybe dystonia and head tremor ET. BUT there is something very grave and unusual happening and I have been researching Parkinsonism for answers. If I am in an early stage of PSP would any of these symptoms be similar to what some members have gone through?

* 3 years poor digestion and swallowing, intense neck pain....soft foods much more digestible, necessary.

* Severe daily fatigue, two hour nap almost daily is necessary, feel better for awhile.

* Head feels squeezed and tight 24/7 with tightness in neck, vocal cords, axial (central) stiffness (not rigidity) in the core of body which is why swallowing and digestion are so difficult. It affects walking occasionally, making it difficult get across an intersection....feel drunk and head isn't coordinating with foot movements...very stiff odd feeling that comes and goes but is progressively getting worse.

* Feel mentally distant from anything that gave me pleasure including socialization. I feel stony faced. No appetite...but I eat. Talking to anyone for more than an hour is stressful to my head and stiffness increases. Sometimes slur my speech, talk slow and find it hard to make sentences. Feel disconnected when in a large group and don't seem to follow what is going on too well. Poor memory!

* Difficulty reading due to blurry eyesight (even after new prescription), tired eyes, difficulty making eye contact, strange eye exam shows not seeing things in lower quadrants of both eyes, (awaiting further testing with specialist), sensitive to glare.

* Function better with L-dopa (mucuna pruriens) every four hours. It is VERY noticeable when it takes effect as face and head pressure lessen and I get relief.

* I often have a contraction of my right hand ligaments in the center of my palm that is painful. My left knee is also affected by this and the right hand was cold all winter. Barometric pressure changes seem to cause more pain than usual. Bedridden on days.

* Very constipated most of the time so work at keeping things moving.

* I have an internal tremor that is in the head and chest many mornings and sometimes at bedtime when I am relaxed. No other tremors.

* Often feel really, really ILL for no apparent reason....gravely ill. Once I get up and moving I push past it and do as much as I can, garden, etc. as hysical activity seems to help. I pay for it the next few days but at least feel alive.

Please don't be shy about asking questions. I need to know what is going on if it's not too difficult for some of you who are having a trying time. As the "Short Circuit" robot said "I need input"! (One of my favorites all time movies.)

[raincitygirl]

Welcome Rideabike! My husband had CBD not PSP, so will leave the opinions to others closer to the psp experience... But were either of those neurologists movement disorder specialists? Did they dismiss PSP? Also have you experienced backward falls?

As I say, mostly just wanted to welcome you. Guessing from the hour that you're in N America? Oh yes you are - Canada. Me too.

Anne G.

[Hidden in reply to raincitygirl]

Hello raincitygirl. I guessed you were close to Vancouver.

To answer your questions, one neuro was at Parkinson's Clinic in Vancouver and other was movement disorder specialist in Kelowna. The latter dismissed pretty much everything and was pretty much not interested. Very disappointing. I read PSP may start of with clumsiness (I am that for sure) and balance issues and balance has gotten steadily worse so have to hang onto railings and feel unsteady a lot of the time.

[raincitygirl in reply to Hidden]

Well my sympathies to you...You don't want a dx of PSP, but it's frustrating and frightening not knowing what it is! 😦. We were referred to the Djavid Mowfagian Centre for Brain Health at UBC. Got a "PSP or CBD" opinion in 2016 and a "Looks like CBD" opinion in 2017.

Wishing you resolution soon.

Anne G.

[Hidden in reply to raincitygirl]

It appears that I may have to have some serious falls first or something else. I just take each day as it comes. I'll keep my eyes on this forum....Thanks.

[katiesho1946]

Hang in there rideabike, those are all the symptoms similar to what have come across with experience care with PSP. Do you have movement issues like bad falls yet?

[Hidden in reply to katiesho1946]

No, just feel unstable walking and standing. Not dizzy or anything but feel sometimes like my head is not connected to what the rest of me is trying to do when walking or for that matter all the time. Thanks for the reply!

[NannaB]

I haven’t had PSP but my husband did. All I can say is that in the two years before diagnosis when I noticed slurred speech, changes in the way he walked in fact 25 changes, he didn’t think anything was wrong. He had no pain and stiffness didn’t come until the last couple of years. He was given L.dopa at diagnosis but there was no effect which was one of the ways they diagnosed PSP. We were told if it had an effect, PSP would be ruled out. Swallowing difficulties didn’t happen until about 3 years after diagnosis. Folk seem to follow the same path but timings are individual. I hope you soon get a diagnosis and very much hope it isn’t PSP.

Best wishes

XxxX

[Hidden in reply to NannaB]

Thanks so much! Just a little add on...I read L-dopa can work for some with PSP for a short time, similar to MSA. It used to last for 4-5 hours but seems like less lately. I've been trying it for about a year.

[Satt2015]

Al I do know if the drug you mean is levodopa it WONT help with Psp

So if that helps I’d say from what I know it isn’t Psp

Sending best wishes at this obviously awful time x

[Hidden in reply to Satt2015]

Thanks and I hope you are right.

[Tillie281]

I think that a tell tale sign of having PSP is that the eyes can no longer turn down the other sign is the change of the way you walk, you tend to walk on the ball of one foot only while the other foot still does the "heel-toe" rolling.

None of your symptoms looks familiar to our experience.

I hope this helps a bit.

T

[Hidden in reply to Tillie281]

Gives me hope anyway. Thanks Tillie!

[SewBears]

Hi Rideabike,

You mention a lot of symptoms that my husband has. He was diagnosed with CBD but when he responded favorably to levodopa the doctor changed his mind and this month they think he has Lewy-body. Our next doctors visit is in about 3 months and they’ll probably tell us it’s something else (again). They still don’t really know after a gazillion tests.

Nanbabs posted something about this and I want to bring it up again in case you missed it:

Normal pressure hydrocephalus (NPH) is a brain disorder in which excess cerebrospinal fluid (CSF) accumulates in the brain's ventricles, causing thinking and reasoning problems, difficulty walking, and loss of bladder control.

I think some of your symptoms might fall under the above category?

Another thing to consider is Myoclonus: Severe cases of myoclonus can distort movement and severely limit a person's ability to eat, talk, or walk. These types of myoclonus may indicate an underlying disorder in the brain or nerves.

Well... that’s enough of me playing Dr. Google. I wish it were simple but there are so many diseases that seem to fall under similar umbrellas. I hope you find a good clued in doctor who will listen and help you. Rest assured that you are not alone. I’m on a very similar path trying to get it right.

We do the best we can with the cards we’re dealt.

Xoxo from I SewBears

[Hidden in reply to SewBears]

I am so glad you responded. What you say makes a lot of sense. I do have bladder problems, never fully emptying and running to the restroom continuously and many times at night...unless I don't drink the way I should. I have done much Dr. Google too and it's good to hear your research as well as mine. Maybe some day it will be clear but until then I just want to hear what others think instead of being alone inside my little head. I have often felt it might be some kind of CFS pressing on the brain as my brain seems to be trying tell me....something? I did have a CT scan of the brain but unless they do the right kind of test it might not show and esp. if they don't know what they are looking for.

Thanks so very much for your input!! Canada healthcare is notorious for holding back on testing but that's why we are so good at doing our own research. Too bad I'm not getting paid for that. I'd be rich. Ha!

[nayook]

I feel for you and wish you every blessing as you walk this uncertain road. Have you requested a midbrain MRI? I'm not sure how early the distinctive hummingbird (or penguin) shape shows in PSP patients. Initially my husband's MRI just showed "abnormal brain lesions", then later the hummingbird sign. Others may know if it can be observed early.

All the best. Lynne

[Hidden in reply to nayook]

I'll have to research that. For now I appear to be on my own. I can't get to the coast again as it's too far and I'll have to get another referral. Guess that's why I'm here. MRI seems out of the question at this time but it might have helped. Thanks for your support!

[Aprilfool20]

Hi rideabike, I was diagnosed 2 years ago with CBD aged59. The symptoms you describe are very like. I too have the internal tremor but it is with me most of the time but no other visible tremors. I am on Madopar which has helped with movement and left arm/hand is no longer cold. It used to be like a block of ice even in Summer. Neck ache rather than actual pain so usually take ibuprofen . Have eye problems on and off,dryness mostly with slight blurring,but again the Madopar seems to have helped. My main problem is with balance so I use a walking stick and a rollator which is an absolute godsend! I did get very depressed at having to sit in four walls all day everyday but my GP has put me on low dose Sertraline and it has given me back some motivation.

I suffered from constipation for a time but that seems to have settled . I also get a ‘mask’ like feeling in my face which affects my speech and causes me to talk on one side of my face. I can no longer sing and I wasn’t bad. As for dancing, well no chance and I used to line dance regularly. Playing guitar is out of the question and gardening is off the cards as well. I no longer drive so have to rely on people to take me out and about as buses only 1 an hour. Hope this helps. Jayne

[Hidden in reply to Aprilfool20]

You are going through a lot and from what I'm reading these Parkinsonism's are no fun. I am happy you took the time to reply. Interesting that there are some things in common between us and mask like face is one of them that strikes me. My eyes are very dry too so must use those drops!

Like you I like to dance and sing but singing is such a strain now. I can still listen to music and enjoy so thank goodness for that. I will look up some more info on CBD since I'm reading the likenesses on HU. All of these things seem so related and I'm sure glad you are getting some help from L-Dopa too. Thanks for writing.

[Aprilfool20]

You will find lots of info on this site and many that care. Good luck!

[demlac]

Hi rideabike,

Unfortunatley these diseases can be a long process in diagnosing!! took two years for us. Hubby has CBD one of his first symptoms was as he put it ".trouble findinding words" then his swallow constantly choking on food! he is completley non verbal now and is peg fed.

It is only when he had a 3D spect brain scan that we where given CBD diagnosis he also had a MRI and cat scan that showed nothing really. At first they thought he had a stroke! Please try and be persistant with neurologists but try not to

overthink things, I know this is hard and the internet has a wealth if knowledge but can alsi be very detremental to your mental health.. Not knowing is so unfair to you and I really feel for your struggle with this at the moment. Maybe ask to go to a swollowing disorder clinic.. also

All the best to you x

[Hidden in reply to demlac]

Yes it's the not knowing that's hard but I'm learning to live with the uncertainty and taking courage from those of you who are living with these diseases.

I had a swallow assessment that showed decreased tongue based movement. It is usually due to some kind of motor disorder. I also had a gastro endoscope and showed nothing just as I thought it would. I found the neurologist quite arrogant. It's hard for a neurologist to be wrong so I guess he preferred to not get involved. Now I understand how hard it is to diagnose. I'm OK with just getting these viewpoints and not running away with it. Like I said before... taking one day at a time. Thank you for your kind comments.

[Hidden in reply to demlac]

Just two questions: How long was he living with symptoms that were getting difficult before you saw a specialist(s) for diagnosis? How long before he got to the point he is at now? This must be difficult for both of you but you still care about me. Much appreciated.

[demlac]

Happy to answer..

First onset of symptoms was mid 2015, took a long time to see Neurologist we where on a years waiting list , it is only when I sourced a private speech therapist that we got in quicker she was a grest advocate!!! Hubby wasn't properly diagnosed till Devember 2017... In August 2018 he was emergency admitted to hospital to have a peg insertion because his swallow was so bad he could still eat some soft food but in November of 2018 he had a fall broke his hip had pnemonia and ended up in Hospital for 3months. He has progressed downhill from there he cant talk , walk, eat orally has no right hand arm movement at all left side is deterioating sleeos alot .. totally dependant on me to shower toilet dress etc.. hes 47 years young....

I hope you have someone in your corner to help fight along side of you.. I feel for you going through this hopefully youll get some answers I dont really know what to say but Neurodegenerative diseases are cruel..

Much kindness to you xx

[Hidden in reply to demlac]

47 is sure young to be dealing with all of this. How good that he has you! I have a new family doctor that seems to listen more than others since I moved to the interior of BC. If he sees things I think he will act and there are other neuro's around. I remain hopeful and still have a sense of humor. (Thanks Mom!) Thanks for the reply and take care of yourself too.

[demlac]

Humor is important!! We laugh often!

This site is amazing for advice or just to read what others are going through so you feel a bit "normal" or to vent, it has helped me alot.

Take care x

[teresa1988]

Hi rideabike,

My husband (now 71 yrs) was diagnosed with PD almost 3 years ago (by a general neurologist) followed by diagnosis of PSP (by a movement disorder specialist) 2 years ago. He was given levodopa at the PD diagnosis, but had unusual and intolerable side effects, so it was discontinued after about 3-4 months. He is believed to have the Richardson's syndrome form of PSP vs. the parkinsonian form which is more responsive, in the early stages, to PD medications like levodopa.

His first evaluation by a neurologist was prompted by loss of balance and falls, usually backwards. Looking back prior to diagnosis he was also experiencing fatigue, apathy, personality changes, slurred speech, minor swallowing difficulties, inability to follow and participate in conversations, blurred vision, etc. Additionally, he had a brain MRI which revealed the "hummingbird sign".

Best wishes to you.

Teresa

[Hidden in reply to teresa1988]

Thanks so much for your reply Teresa. I can relate to all the early symptoms you mentioned without the falls, thankfully. Everyone has been so helpful. So glad when someone shares as being in the dark about this is so much worse. Take care both of you!