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ageing with a disability

pollyanna1052pollyanna1052 Posts: 910Member Disability Gamechanger
Hi, I`ve lived with this unexplained disability for 20 years. There were years when I was wrongly diagnosed with PPMS...a nasty illness, but one well supported by charities and groups. I felt I fitted somewhere.

Then years later, I was given the diagnosis of HSP..hereditary spastic paraparesis....life turned upside down and inside out again....but they also have a good support network...I fitted in with them.

Move on a few more years and I had a genetic test which came back negative........highly unlikley to be HSP.

That was all about 3 years ago and I will never have a reason why I cant walk. I was fine until the age of 45 and I`m 66 now.

As I age, I hate my knackered body more and more. I am highly dependent on carers and hubby for so much.

I`m fed up!

Replies

  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    Hi @pollyana1052
    Not being able to receive a diagnosis is really frustrating and I can certainly relate to ageing with a disability. I try to look at it as different chapters of my story.
    Are there our routes you can take to try and get a diagnosis?

    I can assure you that you are valued and fit in with our community very well.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • pollyanna1052pollyanna1052 Posts: 910Member Disability Gamechanger
    Hi @pollyana1052
    Not being able to receive a diagnosis is really frustrating and I can certainly relate to ageing with a disability. I try to look at it as different chapters of my story.
    Are there our routes you can take to try and get a diagnosis?

    I can assure you that you are valued and fit in with our community very well.
    Thankyou Richard for your kind words.

    No, there is no other route to try for a diagnosis. Last neuro said `what has happened, has happened, we can`t fix it`....I need to accept and live my life...
  • dolfrogdolfrog Posts: 290Member Pioneering
    Hi @pollyanna1052 ;
    I have had a look at the Wikipedia Multiple Sclerosis (MS) article which lists Primary progressive Multiple Sclerosis (PPMS) and the Wikipedia Hereditary Spastic Paraplegia (HSP) article, both of which include some similar symptoms or issues in the texts.

    You could also have a look at the Wikipedia Apraxia  article which also includes some of these same issues.

    I hope this helps. The problem can be finding a medical professionals who is adequately trained and qualified to assess and diagnose these types of complex issues. 

  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @pollyanna1052

    I imagine it is frustrating when they have been unable to give you a diagnosis. To echo Richard, you are very valued here. 
    Chloe
    Online Community Officer
  • pollyanna1052pollyanna1052 Posts: 910Member Disability Gamechanger
    Thank you dolfrog and Chloe. Makes me feel part of something!

    But I wont be seeing anymore neuros or having investigations for my immobility. I will look up Apraxia for info. Cheers xx
  • dolfrogdolfrog Posts: 290Member Pioneering
    Hi @pollyanna1052 ;

    I am in a similar but slightly different situation, I have a communication disability which I have had all of my life, but only really found out about when i was 45, (20 years ago)
    Our eldest son had been diagnosed as having Auditory Processing Disorder APD (a listening disability the brain not being effectively able to process what the ears hear) It was when i was trying to research what his condition was via an online USA support forum that I soon discovered that I had been living with the same issues all of my life.
    I was clinically diagnosed during the first NHS APD program at Sheffield University, the first adult in the UK to be diagnosed as having APD.  My referral for diagnosis was down to the Medical Research Council (MRC) needing some one to set up a support organisation for those who may have APD so that they could gain government funding for a 5 year research program, I set up APDUK in 2003 and they got their funding in 2004.I even found out during this period that I could read research papers, ands even begin to understand other related conditions. 
    And then the politics of the UKs medical professions set in, According to the MRC those of us who have one of the 4 types of APD need life long support from a multi -discipline team - audiologists, speech and language, and psychologists- Which would mean that all three professions and their professional bodies would have to be retrained inline with what is now international research, and use the same terminology to explain the problems we experience. (basically research has indicated that APD is the underlying cause of what sppech and language call Specific Language Impairment (SLI) (which then are now marketing as Developmental Language Disorder) and what Educational Psychologists call phonological dyslexia. 
    All of my family 3 son, my wife and I all have a clinical diagnosis of having APD, but we have no support, help or understanding post diagnosis from these corrupt so called medical professionals. They just put up walls of ignorance to hide their incompetence while they massage their egos and make money out of the vulnerable.
    We are so isolated. I am almost house bound now just to avoid more disability discrimination from others who do not want to understand our communication disability. 
     
  • ebeneeeebeneee Posts: 74Member Courageous
    Hi @ Pollyanna1052 I know how you feel, as a child growing up i was always sick, bedridden for a couple of days on the third day i was up doing the norm doctor couldnt understand what was going on with me, this continued when i was a teenager, i was diagnosed with medical conditions had to start taking medication.......they say life begins at 40 things started to go down hill, (hypertension anxiety issues, even though i had a lot going on i tried to let it not dictate tried to live my life, now in my 50's, diabetes, lupus, osteoarthritus of the knees cps cronic pain syndrome of the body, the ankle cubilant tunnel syndrome of the right arm, frozen shoulders, and last week diagnosed with  cervical spinditus of the neck, and the lumber othosis, im in pain taking gabapentin and tramadol, i feel like im existing not living as when i take gabapentin, pain eases but im drowsy, i miss my life.....theres got to be more to life than this.
  • pollyanna1052pollyanna1052 Posts: 910Member Disability Gamechanger
    ebeneee said:
    Hi @ Pollyanna1052 I know how you feel, as a child growing up i was always sick, bedridden for a couple of days on the third day i was up doing the norm doctor couldnt understand what was going on with me, this continued when i was a teenager, i was diagnosed with medical conditions had to start taking medication.......they say life begins at 40 things started to go down hill, (hypertension anxiety issues, even though i had a lot going on i tried to let it not dictate tried to live my life, now in my 50's, diabetes, lupus, osteoarthritus of the knees cps cronic pain syndrome of the body, the ankle cubilant tunnel syndrome of the right arm, frozen shoulders, and last week diagnosed with  cervical spinditus of the neck, and the lumber othosis, im in pain taking gabapentin and tramadol, i feel like im existing not living as when i take gabapentin, pain eases but im drowsy, i miss my life.....theres got to be more to life than this.
    Thankyou for your reply.

    Yeh life can be so hard sometimes..or even all of the time.

    Take care
    pollyx
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