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Looking for suggestions

bronze73 Member Posts: 3 Listener
I am looking for answers to find out what could be wrong with my partner Clive.
In August 2017 Clive started getting tingling in his toes which continued for some months and progressively spread through out his feet. His feet were hot and swollen . We put it down to the long hours at work.

In March this year his symptoms rapidly changed and he was finding it harder and harder to walk . He was unable to put his feet flat on the floor due to the burning numbness and chronic pain. His condition continued to worsen and the feet became discoloured varying from all shades of purple to blue. They became icy cold and very sensitive. He can no longer wear shoes or socks and can only wear shorts as the impact of pulling on trousers is too painful. 

Throughout this time he has attended several GP appointments and seen a neurologist who asked for him to have a MRI. He has been prescribed gabapentin which hasnt helped. Liquid Morphine also no relief. He was referred to an orthopaedic doctor which has a NHS waiting list of 25 weeks. We decided to get a private consultation costing £260. Before we saw the Dr he was asked to have xrays,  Which we felt was pointless as we knew he hadn't damaged bone. But we went to the x-ray department to be told we had to pay £418.

Even the radiographer was confused as she could tell the xrays weren't needed.  The orthopaedic doctor refused to see us with out the xrays so we left.

The next day we managed to get an emergency appointment at our GP surgery. The Doctor we saw was fantastic . She booked him for an emergency vascular test, has written to original neurologist .  Also she sent him for xrays just to show we did all we told. Free of charge. My partner is continuing to deteriorate and now his hands are becoming effected. I'm watching an active bubbly fun loving man turn into a shell of himself.

He can no longer stand and get his balance. He stopped going out only to appointments in a wheel chair which is too small for him and he doesn't have the strength in his hands and arms to wheel himself around.  He is in constant pain and lays with his feet elevated . This used to help but not as much now.

The pain coldness and discoloration has now spread to below his knees. When moving around our home he has to crawl as the pressure from his feet is too much. We are waiting for a hospital bed as he can't manage to go up and down the stairs. We have managed to get an electric scooter but he can only use it for limited  times because he can't stand afterwards.  It has been a hard struggle and I hope we make it to a diagnosis soon. His moods are bad he gets frustrated and low. Feels useless. 

I've been researching his symptoms but nothing really compares 100% He has now had the MRI which shows no abnormalities just wear and tear in neck . He is going for an ultrasound as now been told he has enlarged lymph node in his neck.  Any ideas or thoughts would be gratefully received. Some one out there will have the answer just got to find that person. 


  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @bronze73
    Welcome to the community! I am terribly sorry for what your partner has been and currently going through. Unfortunately we are not medical professionals but we will do whatever we can to help you :)

    The tingling, hot and cold, changing colour and affecting hands reminds me of when I first started having symptoms of Raynauds, I was in so much pain for the first year and a half but numerous GP appointments, X-rays showed nothing. I was referred to a rheumatologist who diagnosed me with Raynauds. So it might be worth asking to be referred to a rheumatologist.

    Hope this helps. Please let us know if there is anything else we can do for the both of you. Please keep us updated :)
    Disability Gamechanger - 2019
  • bronze73
    bronze73 Member Posts: 3 Listener
    Thank you.... I'll ask for tests to be done. Dr did mention Raynauds in the beginning but hasn't been any mention of it for awhile.
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Best of luck to you both! :)
    Disability Gamechanger - 2019
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @bronze73 Thank you for your post. I am sure you know we are not medical professionals.

    So sorry what has happened. My friend @Ami2301 has suggested Raynaud's Disease.  Which in my opinion does sound like this but you need a proper diagnosis.

    Having had a look on line.  Something to consider may be not the answer for some. Yet I use it and for my own personal issues.

    I would advise seeking the help and advice also dietician or nutritionist.

    Having the knowledge and information. Especially dietary requirements.  Might be beneficial to his well being.

    I am sure the whole community will give you support.

    Please can I say wish you the best and please come back and let us know if we can advise further.

    One final point may I add often some of these conditions if it Raynaud's have there own associations and websites something to consider. Looking at. Can give you much needed support.

    Please take care


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @bronze73 and welcome to the community. Thank you for taking the time to share this with us all. I am sorry to hear this. The community cannot offer medical advice but I hope we may be able to support you through this, please do keep us updated. You may find the parents and carers board useful and the undiagnosed board. Hope to see you around and let us know if there is anything that we can do to help :)

  • bronze73
    bronze73 Member Posts: 3 Listener
    Quick update for those who are interested and left comments. I know its been awhile, partner has been diagnosed with severe small fiber sensory neuropathy witj erythromalegia and complex regional pain syndrome... awaiting further tests ,22 blood tests, and a skin biopsy to be done under a specialist in Oxford. He is now totally unable to walk amd we have made many adaptations to our lives. Even his mental state is being effected as he feels so useless and i feel helpless. Be nice to chat to anyone else suffering from this or caring for someone with it.
    Many thanks
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    I am sorry to hear this however I am glad he finally has a diagnosis!
    Disability Gamechanger - 2019
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Im so sorry to hear this @bronze73
    Are you getting any support? Both yourself as a carer and your partner for his mental health and support in going through this diagnosis?

    You might like to check out our Parents and Carers category where you can chat with others.

    Senior online community officer


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