Hi, my name is EDD!

EDD · August 2021

Hi I have suffered with polio all my life realise there was more severe people than me with polio.
Recently I have been noticing a big change in my ability to do things where are used to do loads of things now I do a lot less, I've always suffered with aches and pains but have been reluctant to have medication at any time I was told when I was 17 I would be in a wheelchair at 40

I am 63 now but I've noticed the last 12 months loads of things I used to be able to do I cannot do now and I'm suffering with lots of muscular problems.
Recently someone said to me you are suffering with PPS I didn't realise this until I read a few things online and what people were saying regarding their symptoms were very similar to me when telling my doctors this if you can get even an interview with your doctor I just offer you medication.
I also didn't realise for all these years I could've applied for PPI trying to apply for that now but they don't seem to recognise even though I have had a disabled badge for many years

Someone suggested I should join this group and see if others are having similar or same problems I will say I am dyslexic cannot read and write and a computer generates the words for me so if there's any spelling mistakes I apologise in advance.

I have not read anyone else's problems yet thought I would outline why I have joined this group

janer1967 · August 2021

Hi and welcome to the community Feel free to join in or ask any questions

Good luck with your PIP claim hope it is successful

As we get older the aches and pains appear but hope others can help with the same condition you have

EDD · August 2021

Thank you very much I am just trying to find out if there is others like me I'm normally not talkative to anybody regarding my health issues, recently I have been depressed for no real real reason's more for my aches and pains have got worse and the lack of interest in my sport, which is really unusual for me thank you anyway janer

Cher_Alumni · August 2021

Hello @EDD and a warm welcome to our online community. It's great you found us and thank you for telling us some more about yourself. How has your weekend been?

I'm sorry to hear your moods taken a bit of a dip recently, would you feel comfortable talking to your doctor about it? I realise it's hard to get appointments for many people at the moment but if you ever feel like you are getting down and it's impacting your everyday life, do give that some thought.

Also, you mentioned thinking you have PPS? Excuse my lack of knowledge, but I wasn't sure which condition that was! Would you be able to fill us in?

For help with your PIP claim, feel free to post in our PIP, DLA and AA category and ask any questions. If you think it might be beneficial, you can also get free independent advice from trained welfare advisors by visiting the Advice Local website and entering your post-code, selecting 'Welfare benefits' from the drop down list and finding respective contact details on the next screen.

In the mean-time, please do have a browse around our community and familiarise yourself with the place some more

Some nice starting points are our different chat categories and our virtual coffee lounge which is where we all get together to talk about bits of everything.

Take care and I look forward to speaking some more again.

EDD · August 2021

Thank you very much for replying to my post sorry for not clarifying PPS PPS is Post polio syndrome I am not a doctor but I read somewhere it was to do with the deterioration of the muscles after 30 years of having polio and all the symptoms state this is what's happening to me still can't get the doctors to investigate it at the moment due to the pandemic.
I have looked at the PIP Dla and AA I have took myself assessment and scored 21 but the advice that I have read tells me to go for an appeal and asked for a medical face-to-face for many years I have not realised I'm entitled to this and it would've been helpful for the things I have to do on a daily basis.
I would rather not talk to my doctor regarding my depressive state at the moment due to the fact I need to work to pay my bills and do not want to be described any medicine regarding depression
Because it will go against me working I only work 32 hours a week that is enough to survive but clearly I need more to survive but physically can't do more, I am an agency driver and do not do any physical work I operate a crane so if I'm on high medication I cannot operate these machines as I own my own house I will not be entitled to any unemployment if I am it would be very minimal and could not survive on that.

Over the next few days I will look through the forums and check things out thank you for replying

Tori_Scope · August 2021

Hi @EDD

Yes, according to the NHS website the symptoms of PPS can include:

persistent fatigue (extreme tiredness)
muscle weakness
shrinking muscles
muscle and joint pain
sleep apnoea

I'm sorry that you've been struggling to see a doctor about it. Is it your GP you're trying to get in touch with, or have you been referred to another doctor? I know that getting an appointment can be tricky at the moment.

Not everyone will get awarded the same score they get on a self-assessment, as you're likely to score yourself differently to an assessor. I'd definitely encourage you to submit an MR if you haven't already and believe that you're entitled.

Medication isn't right for everyone, but I'd encourage you to discuss your options through with your GP. They can't force you to take medication in that way, and may be able to make other suggestions. Have you considered talking therapy? If you live in England and would prefer not to go through your GP, you can self-refer for therapy through the IAPT service.

EDD · August 2021

HI TORI
Thank you very much for your advice I had a telephone conversation with my GP this morning he doesn't understand what PPS is even questioned if I had polio as a child because he couldn't be bothered to read my notes clearly

When I explain to him I have had many MRI scans over the years going back to their 70s when they was not on microfilm there was like an x-ray, he questioned my own knowledge of this which I found very strange but clearly he doesn't want to read back through my notes and this is what I've had for many years they tend to treat you for your arguments and ate some pains with medication when you get the medication you have to take another medication cause the side-effects from that first medication at one stage I was on eight tablets a day found out only need three the rest of them were purely for side-effects.

I have contacted some neurologist today to in London and tried to contact Kent and Canterbury Hospital so far not one has returned a call and this is what I get all the time after a while you just give up which is frustrating.

You suggested therapy therapy is I believe for something that someone thinks happening that's not happening I don't need therapy for my muscles that are deteriorating and my bones also if you are referring to my mental state at the moment I'd rather leave therapy alone I hope that's what you was talking about.

I just thought this group might have other people like me have this problem and I obviously do get the problem of appointments with doctors they seem to be over the telephone like my PIP appointment was a telephone conversation and I quoted of the appointments I had for CT scan and waiting for an MRI scan regarding my condition and they reported that I am not taking any medication and not following out any further appointments for my complaint again I clearly didn't listen to what was said

Thank you anyway for your voice I shall keep on going for another couple of weeks if not then I think I will just give up because it's ridiculous that no one seems to understand what's going on NHS or otherwise and I'm not and I contract I work and I try to do things but just struggling a lot more lately thank you

LokiF · January 2023

hi Edd,
I helped partner get diagnosed with PPS, but you do need to jump thru a lot of unnecessary hoops.
She had her whole spine MRI'd and was only referred to a neurologist because the MRI specialist did a reflex test on her and suspected PPS after I mentioned it....
PPS does tend to slow people's reflexes (following a pencil, touching your nose).
I sent a whole letter mentioning her own descriptions of how her leg 'stopped' when walking too far or tired.
Mentioned her falling over when her leg just gave way.
How her leg muscles has atrophied in the last 10 years so her one leg is 1/2 thickness of her other leg.
How her head hurt went she was stressed, tired.
etc, etc...

She had been telling multiple GP about her problems for years and been ignored.
Her records even said she had tuberculosis as an infant instead of polio because the GP didn't remember correctly when he wrote down her record after talking to her the first time a decade ago.
That's permanently on her NHS records :-(

This time it came from me a third party and not her.
That's the key! Involve some one else.

Prepare and get someone close to you to write to the Neurologist or GP before you get an appointment.
Get them to write about their concerns and get them to explain your PPS symptoms.
Include lot of links from the British Polio Org. and the NHS pages on PPS. (see below)

It's daft but if its written down, its harder to ignore. Also you can cc'd the Britishpolio.org email.
another trick..

This site helped... https://www.britishpolio.org.uk/
They even have a ward for PPS. So its the best NHS source of knowledge on PPS.

This page has a lot of helpful guide for GPs ignorant of PPS.
https://www.britishpolio.org.uk/guides-hc-professionals

If you want to ask to be referred to a neurologist.. send your GP this quick guide PDF about PPS.
https://www.britishpolio.org.uk/_files/ugd/149bdd_61b3f299078a4a9d9033e37922740a19.pdf

Another good site.
https://www.ninds.nih.gov/post-polio-syndrome-fact-sheet

If you have muscle wasting, and muscle pain due to overstressing nerves or cold, get someone to mention PPS to your GP and get them to ask if your pain could be PPS nerve orientated rather than muscular or skeletal?
GPs tend to go for those first.
MRI's don't show PPS so its a case of GPs diagnosing by ruling out everything else.
If you 'educate' them, they might take offense but could also accept the British Polio society's advice when they can't find any other reasons/causes.

FYI Covid has been called the Polio of present day.
Both affect respiratory, muscle , nerve tissue.
Polio is back in the UK since June 2022.
https://www.gov.uk/government/news/poliovirus-detected-in-sewage-from-north-and-east-london

In early 2021, the welsh Covid pages actually listed PPS as a vulnerable condition.
Sadly they synced to the English NHS pages and now PPS isn't a listed condition despite Polio being a respiratory disease.
PPS is long term damage to motor neurons by Polio and some Covid patients that were seriously affected will probably have something similar in years to come.

LokiF · January 2023

PS

If you do have lot of pain due to muscle weakness, wasting, balance, walking problems etc.
e.g. foot drop.
You could look into HBOT ( Hyper Baric Oxygen Treatment )

It is breathing oxygen at pressure (2 bar).
If you can be do small exercises in the pressure chamber it can help you regain muscle control.
With PPs you just need to be careful not to over do it and start slowly,

HBOT is over looked by the NHS and GPs.
Not free, but as a neuromuscular issue (Like MS) it is often subsidised.

HBOT helped me avoid a disc operation and improved my muscle/nerve coordiation after losing it due to foot drop.

Hi, my name is EDD!

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