myfamilyandmsa

Living with Multiple System Atrophy. A life limiting, neurological brain disease.

Multiple System Atrophy -back to where we were

on April 13, 2013

Sam, Rhanna and Andy
Sam:
I didn’t think I had much to write for the blog this week, things had been quiet and really if I’m honest I’ve slept most of the time away and unless its been written down, it’s been forgotten about! I even texted Rhanna to ask if she was ok at school and was she was actually at a sleepover!! Made Rhanna laugh!

Then yesterday I had an appointment at neurology. Neither Andy or I knew why but you know what’s its like, you never question the reasons. When I went into the appointment the Doctor ran through all the normal questions, my symptoms, when they started ? At this point he hadn’t opened my medical records, I said to him about my MSA and he said “I don’t think it is MSA” as I sat there opened mouthed and I said what we has judging this on, his reply to me was firstly my young age and secondly the pain, apparently pain is unusual in MSA? He asked if I would repeat all the tests, definitely not I said and was he even aware how many doctors I had seen who told me yes sadly it was MSA, not to mention the fact my family, my 16 year old daughter was told her mum was going to die.
Anyway when he opened my holy bible of a medical records, clearly I had seen a number of doctors and this one had just made the largest error, he gave me back my life for a minute, maybe two, maybe less but regardless for then I didn’t have MSA, I cannot describe the utter pain and devastation he caused me. Imagine after been told your going to die, then your not, then oh wait yes you are. As I type this I’m crying so hard, not because I have MSA but because for that small moment in time I thought I didn’t. MSA is so incredibly hard to live with because you never know when your symptoms will worsen/improve, how you are going to feel in the morning and the pain your family go through. It felt like March last year all over maybe worse.
After speaking with the nurses at the hospital they helped me more than I can tell you, and I was reassured I wouldn’t have to ever see that doctor again. The nurses helped me calm down and then we found out I’d been put in as a new referral!!!! He never even knew me, my history or bothered to look. When we left the hospital I phoned my GP to change my appointment with him as I didn’t want to wait, the receptionist changed my appointment.

Thursday morning arrives, 09.03 the telephones rings and on the end of the phone was the hospital, apologising profusely, couldn’t offer any reasonable explanation and would I like to go into to speak to my own doctor…..erm no thank you, I was mentally, emotionally exhausted. The nurses came out to see me and change my dressing etc and they couldn’t believe it, my normal nurse was furious and said I could choose to work with the palliative team, so that’s where I said yes, I know this was a long story and apologise to you all.

waterloo road

On a much much happier note my baby is 17 on Sunday (not such a baby) and she has been working as an extra on her favourite show Waterloo road. I’m very proud of her commitment, she has to be in Greenock every morning for 07.00 which means leaving here around 05.45.
sam and torsten

On Thursday we had the opportunity to meet the most incredible man who very sadly lost his beautiful wife Aileen in 2010 due to MSA, immediately he put us at ease and honestly I could have stayed there very much longer, Torsten I know you will read this and I would like you to know that I think you are amazing, I think that Aileen is so very beautiful and I know she’s still with you. I would very much like to join you onetime with you and your irn-bru, your roll and paper and come and visit Aileen with you. Thank you so much for yesterday, you are definately one of life’s gentlemen.

So as we are back to where we were and we continue to live with MSA, we can’t allow it to overwhelm us and my thanks to Katie Rigg from the Trust for her unwavering support. I am going to look forward to my daughters weekend and try hard not to think about what that man did to me and the heartache he caused.
Happy birthday cookie, love you forever!
And also happy 21st to Rachel may your future be filled with nothing but sunshine xxx

Rhanna:
After watching my mum this week after hospital I wasn’t sure I wanted to write for the blog, I was so scared for her, scared she was going to give up and not fight anymore, when I saw her after that appointment she looked so small and so fragile, honestly I hope that doctor who managed to upset my mum that much, I hope he suffers many sleepless nights. Anyway mum said we shouldn’t allow that man to stop us from maybe helping someone else, but now I wonder if the blog does help anyone or are we writing because we can’t stop? Everything that has happened has brought MSA straight back into our faces and now we have to try and pick up the pieces. It’s sometimes just a little too hard though.

rhanna blond wigMy week has been awesome, I’ve been working on Waterloo road, just as an extra but it’s still AMAZING! I also got the chance to spend sometime with the cutest cousins in the world, Keir and  Morvern, we all stayed at our granny and grandad’s so it felt we were spoilt 🙂 I also stayed with my granny and grandad (mum’s mum and dad) I also love staying there too and my granny drove me through and picked me up from work, I like that time just the two of us 🙂

music group rhanna and samMy friends and I also went for this amazing singing thing where we got to dress up and make a CD hehe it was so much fun, Poppy, Hazel, Jodi and Kirsten the forget me nots hehehehehe thank you mum and Andy and granny, it was totally amazing and we will all have our c.d as memories forever ❤

Sometimes when I write the blog I think and feel guilty because it looks like I’m having so much fun and I am but in the background MSA is always there and I’m scared every day is another day closer to losing my mum, it makes me feel selfish, my Mum said I shouldn’t feel like that and that of course for me every day should be a good one but it’s not because what happens the day that my mum isn’t there anymore on her chair?
So even though I know I shouldn’t feel guilty, sometimes I do but I know mum wants me to live like nothing is wrong so that’s what we try to do.
Love you mum all,the way to the moon and back again xxxx xxxx xxxx xxxx
andy sax

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15 responses to “Multiple System Atrophy -back to where we were

  1. Fiona Thomson says:

    Just shows how strong you are that you can overcome the feelings that the incompetent imbecile at the hospital caused. Love to you all and happy birthday to Rhanna for tomorrow xxxxxx

  2. Thank you Fiona ….. Got Andy’s 50th on the 22nd!!!! X

  3. Heather Buckel says:

    Oh Sam, you must have been so traumatised with what that stupid Dr said to you. I want to go and thump him for you. Keep on trucking my lovely and hope you have a fab birthday weekend for Rhanna x x x

  4. Judy Green says:

    In the words of Victor Meldrew ‘I don’t believe it’ !! I just hope that pleb has learnt a massive lesson and never puts anyone through that heartache again Sam.
    You really are one spunky lady,putting all that rubbish behind you and concentrating on Rhanna and Andy’s birthday celebrations.I hope you all have a lovely time.
    Love and prayers,Judy

  5. angela.armitage24@btinternet.com says:

    Sam

    You and your wonderful family give so much to those of us who are coping with MSA in our lives (my husband Eric has it and this is his 6th year).

    What a brainless idiot – not to even read the notes. It is bad enough that we are all in the whirlpool of MSA every day – each of us affected – in different ways – each trying to be strong for the other – without having to have been told that. What a blow – elation and then utter deflation.

    Rhianna wrote that she wasn’t sure if this blog helped anyone – trust me it helps hundreds of us out here.

    I cry for you family – I share you joy on the “lovely” moments you get.

    Please know that you are in our hearts and prayers everyday – and you and your family – are truly amazing.

    Warmest Regards

    Angie & Eric Armitage xx

  6. Barbara Hibbard says:

    My brother, Tom, is in the last stages of MSA. Hospice is now on board. I hate what this disease has done to him and the suffering it has caused his wife and children. Tom’s care has been wonderful and that gives me solace. How I ache for the family care givers it is a monumental job, but the graduated and love I see in Tom’s eyes is deep and soulful. He will meet his maker soon and I will always be amazed at how my sister-in-law has risen to this occasion and loved my brother. Barbara

  7. terry connolly says:

    what a plonker the doctor who had;nt a clue……………similar happened to me many years ago after I had life saving bowel surgery…….I told him I felt so bad about my body he replied just get some new frilly lingerie………………..no emotions at all……………just as well I also had good husband to help me ……………….Sam it is so sad for you going through this awful msa…………..I often pray for you and Andy and Rhanna…………….cant say anything else……………….God Bless xx

  8. Jean Ramsey says:

    I am so sorry for what you went through, Sam. When I first saw the words, you don’t have msa, I thought oh, maybe I don’t either. Then I read the remaining blog. God Bless you. And, Happy Birtbirthday to Rhanne and Andy.

  9. Aileen Lloyd says:

    That’s shocking Sam. Hope it wasn’t my neuro!

  10. Alison Martin says:

    So sorry to hear about your difficulties with the neurologist. My husband Peter suffered the same in 2008 (before his diagnosis) when a neurologist told him that he didn’t know what was wrong – it was “evidently neurological” but there was no point in seeing him again because he didn’t have a diagnosis!!! He now sees a wonderful team who persevered until they did get a diagnosis. We were interested in your comments about pain because my poor husband suffers (alongside his other MSA problems) with the most excruciating and constant burning neurological pain. It is all on his right side, in his face, throat, foot, leg, and up into his body and appeared before any of the other symptoms. Apparently a very few unlucky MSA sufferers get this type of pain. It is bad enough having MSA (especially at your young age), but to have pain as well is even more cruel! We are thinking of you and your family. Do you know of any other MSA sufferers with pain?

  11. wilma0750 says:

    Re your visit to that bloody hospital and that horrible doctor a wish samantha that he could have saw what hes done to you and yours its felt like to me yet again our hearts were being ripped out he needs horsewhipped . sod him . anyway didnt we have just the best time on saturday even tho you were poorly memories sumphie is what its about and omg today was just the very best and poor andy doing the running about again hes like you bloody stubborn loves uz infnity xxxxx

  12. Dear Sam, the doctor’s book on MSA needs to be thrown in the bin and rewritten. A lot of patients have pain – me too. What a horrible doctor! A professor once told me he would get me walking again. I was on such a high for a while, but the roller coaster soon plunged; he didn’t know what MSA was and thought I had MS. Best wishes for a better week! Hugs, Sonja

  13. Phil Bromwich says:

    Hi Sam, your words bought back so many memories of caring for my wife Carol. She passed away in February, her diagnosis was MSA although she died of a stroke but both during her last stay in hospital and prior to that we were forever arguing with medics who either didn’t know what MSA was, or argued against the Neurologists diagnosis and it made the journey for both of us so difficult! We lived with this for about 8 years and like you her hospital file was about 10 inches thick but the consultants rarely read the file and you felt that you were having to start from scratch each time – no joined up thinking betwen the different agencies within the NHS! We had a wonderful 40+ years together and you must make the most of everyday, and show some tempered aggression towards the medics when you disagree with them or they are clearly talking nonsense!
    All the best to you, Phil

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