I'm feeling fobbed off by my doctors, and want a definitive answer

2021lala_smith86

Hello i havent posted on here for a very long time but im being fobbed off yet again by doctors i was diagnosed with mild spastic diplegia when i was 25 10 years on and i have problems with my left leg been told its a dystonic.spasm been told that some of my symptoms are psyccoscematic been told again that is there is use in carrying on having botox as it isnt really helping as its variable all i want to know is what the hell is wrong me been fighting this battle with doctors for years still wont give me a definitive answer so annoyed its unreal i have absolutely no faith in the nhs anymore 

2021lala_smith86

Experiencing grinding and clicking in shoulders and deep pain in them and my arm goes numb when i lie it straight and back and neck pain got an appointment with msc in a few weeks scared its arthritis half of me doesnt want to put myself through it incase its all in my heard 

Tori_Scope

Hi @2021lala_smith86 Welcome back to the community.

I'm sorry to hear that you haven't been able to find out what's been causing your symptoms. Who are MSC, if you don't mind me asking? 

I'd encourage you to follow all of the avenues presented to you by your medical team, as it's better to know what's causing the pain. Even if your pain is psychosomatic, it's much better to know so that you can explore your treatment options.

I've moved your post into our category for undiagnosed conditions so that others in a similar position will be more likely to find your post.

2021lala_smith86

Thank you tori msc is muscular skeletal clinic i know my pain isnt in my head but he didnt have my notes suprise suprise ive decided to put a complaint in had enough been like this since i was 18 and had to fight for a diagnosis my cerebral palsy causes me pain every where i have bad pain in my left leg and also im very tight in my shoulders they brushed under the carpet time and time again and im not letting them do it to me anymore so bloody angry 

chiarieds

Hi @2021lala_smith86 - & welcome to the community. It somewhat frustrates me when Drs say you have a 'mild' condition, as to my mind you either have it, or you don't, just we're all affected differently with our individual disorders. Anyway, you have a right to be listened to, & to have some answers. Do you know when you'll be seen in the musculoskeletal clinic? Hopefully soon.

I'll ask Scope's CP Specialist Information Officer for his help; @Richard_Scope please can you advise here.

2021lala_smith86

Thank you chaireds 13th of September 

Richard_Scope

Hi @2021lala_smith86
Good to meet you. I do not think your symptoms are psychosomatic. It sounds to me very much like Post-Impairment Syndrome which is very common in people like us with CP but not as widely acknowledged as it should be by medical professionals.

2021lala_smith86

Richard_Scope said:

Hi @2021lala_smith86
Good to meet you. I do not think your symptoms are psychosomatic. It sounds to me very much like Post-Impairment Syndrome which is very common in people like us with CP but not as widely acknowledged as it should be by medical professionals.

Thank you Richard youve made me think im maybe not crazy how do i go about this post impairment syndrome? What avenues do i go down? Kind regards 

Richard_Scope

Well, I would take the post impairment syndrome information to your G.P. and discuss it with them. I would definitely take it to your MSC appointment on the 13th of September too.

2021lala_smith86

Thank you Richard