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Thread: Hello I'm a first time visitor

  1. #11
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    Hi DD
    We live in Torbay too so I guess you may have gone to Torbay hospital first?
    My husband Tony started getting fasciculations in his arms in the summer of 2015 and he saw neuro Dr K in Oct 2015 - he was told it could be MND (much to our utter shock) age related and no cause found or something wrong with his spine or brain. He had emg/nerve conduction tests, MRI scan, lots of bloods etc - all NAD. Dr said he would see Tony every 6 months and sooner if any problems. This carried on for a while - EMG/nerve tests showed that the chance of Tony have MND was very remote - the doc said his emg/nerve tests were totally crazy and he was stumped as too what the problem was. In the autumn of 2016 Tony's right shoulder started being difficult to use - his GP sent him for physio, scan and he had 2 steroid injections. Physios couldn't understand what the problem was. Then the weakness went down his right arm. Following further emg/nerve tests the doc rang Tony to say he thought he had multi focal motor neuropathy and was setting him up to have intravenous immunoglobulin therapy. We celebrated but after initially thinking the ivig was working (cramps stopped) his left arm became weak. I sent an email to the doc (I work in same hospital). He said he would see Tony in clinic soon. Nothing happened - I spoke to his secretary who said she would put a note on the docs desk. Still nothing. Tony had to stop work and driving last June and I was cutting his food up and dressing him by now. The GP wrote all this to Dr K - still nothing - we only had a response when I asked PALS for help. Our daughter is a junior doc and was working in a big neuro ward in Nottingham as part of her training. They advised we go to the National Neuro hospital in London. We got an urgent appointment and saw Dr Sharma in the first week in October. He diagnosed Tony with MND straight away. We were totally shell shocked. My mum had died suddenly of sepsis a few days before so as you can imagine it was a terrible week and we are still struggling to be honest. How is Tony now - well he struggles but can pick up food like toast, but I feed him most meals, he uses a straw to drink and we are going to have a wetroom installed next month. I have to shower him, help him dress, do all his personal grooming etc. It will be touch and go whether he will be still independent with the toilet (he is struggling +++) by the time our wetroom has been done (he will be having a shower toilet seat). Tony struggles with steps, has to sitdown for a rest in shops and finds it difficult getting off chairs, settees etc. I seems to me his symptoms are happening quite quickly - but don't really know. He started riliazole a few weeks ago and has got worse since being on that too.
    I self referred Tony to the community OT team and his OT has got him a NHS funded electric wheelchair and is getting a ramp too. NOt sure about your finances but if you hit their criteria you could get funding for a wetroom and disability adaptations in your home too.
    As you live so near maybe we could meet up?

  2. #12
    Forum Member Terry's Avatar
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    May 2012
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    Hi Devonmaid and welcome to the forum,

    Sorry to hear of your journey and Tony's diagnoses. Shame that your local hospital could not detect possible Mnd earlier.

    When you get the wet room sorted make sure you get a wash dry loo or a toilet seat that does a similar job. His OT might be able to help pay towards it even if you have funds or the Mnda might contribute.

    If Tony's having trouble getting up from chairs, then I rise and recline chair is invaluable. Again your OT could help and the Mnda sometimes supply them if his OT can't.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #13
    Forum Member Ellie's Avatar
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    Hi Devon and welcome to the forum.

    Sorry you lost your mum.

    I'm shocked - and terribly sorry - at what you and Tony were put through by Dr. K!! At the first suspicion of MND, Tony should have been referred to a specialised Neurologist or MND Clinic. EMGs are best done by a specialised Neurophysiologist who can interpret the results competently.

    I know this is irrelevant to you now, but am writing it if it can help others.

    Is Tony planning to get a feeding tube, given his feeding difficulties?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #14
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    Feb 2018
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    Hi Ellie

    His swallow is fine. It is just his arms and hands are so weak he is unable to actually feed himself.
    Karen xxx

  5. #15
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    Sep 2017
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    walton-on-Thames
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    Hello Again
    I have just left a posting about Tony and taking Roluzole when I saw your other posts. I had a smilar experience as you at my local hospital who seen to have little experience with MND. I self-referred to Dr S at the National and felt better immediately because at last I had someone who cared and who could answer my questions. Although there is little treatment knowing that someone cares and is sympathetic is so very important.

    I live alone and it has taken me six months to get my future care in place. It has been a lonely. scarey time. I have come to the conclusion that MND care is a postal lottery and depends on the whether the individual Trust want to offer their support. There is a MDT in my area and on paper they apear to be doing what is required but in reality it is not joined up care and there is no Clinic if I have a problem. I have to contact individuals. My local hospital only has general neurologists and at no time was I offered a referral to a Specialist. I was given my diagnosis but questions were not answered. It was suggested that I look on the MND website for more information. The MNDA offer an amazing support especially considering that there are only an estimated 5K sufferers in the UK. I no longer trust my local hospital and wonder what I will do when I can no longer travel to the National.

    That said, I must say that I have met some wonderful individual professionals who have been a marvellous support, so it has not all been bad. The MNDA recently put me in contact with a Visitor who has already been a great help. I am lucky to have some great friends who visit and take me out to lunch and for tea and my daughter visits me regularly with my grandchildren so I do still have a lot to be grateful for.

    I am still very unsure of my future and how long I will be able to stay in my own home as I have no family member to look after me and private care is so very expensive. I am finding walking increasingly difficult and my right hand is becoming pretty useless, . My local County Council announced yesterday that they intend once again to cut their Adult Care resources and Continuing Care Fund contribution in next years budget drastically.

    Look after Tony and take care of yourself. I hope that you both get all the support you both need in Sunny Torbay!

    Annb

  6. #16
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    Feb 2018
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    Thank you Ann for your lovely response. I think everyone in this forum has fears for the future. I find it heartbreaking to watch Tony struggle and it is worse for the actual sufferer. Tony is reading on the forum - responses to our posts and all the great information. Unfortunately he cannot type or write anymore. This disease just strips you of everything - it is so cruel

    On the plus side - it is indeed sunny today

  7. #17
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Devonmaid View Post
    Tony is reading on the forum .. Unfortunately he cannot type or write anymore.
    Tony need not be alienated from the internet and emails, or any aspect of a PC. My hands were also first to succumb and I too lost the ability to type and to use my PC in the "convential" way.

    I use the Tobii EyeX eye tracking device (£79) on my Windows laptop and there is a choice of free software that gives full use of the PC, including text-to-speech.

    There is also an integrated Tobii PC eye gaze system (it won't suit some people's requirements of PC functionality as it's quite low spec) but, there are ways for Tony to use a PC/Windows tablet. Contact AAC service.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

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