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- 26th September 2019 at 4:46 pm #90838
Hi I have just realised that the beast (MSA) reminds me of an onion you seem to remove one layer and then another one appears and you start all over again with another symptom. I have had a real problem the last 14 weeks with diarrhea see gi consultant Had endoscope top and bottom received recall for next week. Diarrhoea has stop but now constipated so take laxative and Voice just disappeared but come back thankfully. keep being positive so I am told but sometimes gets very frustrating thanks for letting me bend your ear regards Chris take care.11th October 2019 at 12:04 pm #120830Diane BallParticipant
Yep, great description! you get one symptom under control, or at least accepted, and then another one is underneath to keep you off your guard!! As long as you are aware that that is how it will be then at least you can roll along with it. I hope the recall appointment was helpful.
the voice going and coming is a real nightmare isn’t it, the first time it happened to Geoff he was in hospital and it suddenly struck me that he had no speech at all! stayed that way for quite a few days, then once it was back he started back with the “have you locked the door?” type questions which I found frustrating as I had managed to do all those things while he couldn’t bug me and there were other things I would have loved to hear him say!! :))
Keep going, no one can be positive all day every day under these circumstances, it is OK to vent and let yourself off the hook sometimes – you usually feel much better afterwards as it is very energy sapping to try to push the feelings down constantly. Best to acknowledge the feelings, let them out and then dust yourself off and start again!
Best wishes, Diane14th October 2019 at 9:01 pm #128280
thank you very much for your reply,Thanks for the good advice,
Best wishes Chris15th October 2019 at 11:00 am #129384Diane BallParticipant
i wrote this poem a couple of years ago about the fluctuating symptoms, I hope it make you smile.
My husband, Geoff, has Mulitple Systems Atrophy. One of the frustrating things about it, from our point of view, is that the symptoms can change from day to day. You just get used to something then the opposite happens! I began to think that someone had a way of changing the symptoms in order to confuse us!!
Who has got Grandad’s controller?
Who has got Grandad’s controller
Somebody must have, I’m sure.
No, not the one for the TV and light,
Or the lift, or his ‘up and down’ chair
Who has got Grandad’s controller
You’re all going to have to be searched!
Look in your handbags and backpacks
Without it we’re all in the lurch
On Monday he had a real lean to the left
On Tuesday, a lean to the right
On Wednesday his chin was down on his chest
And today sitting here, bolt upright
One day the waterworks run like a dream
The next they’re on a ‘go-slow’
Sometimes the legs stand up ‘Just like that’
Others it’s ‘Yes? Yes? Yes? …. NO’
I’m sure someone just thinks it’s funny
Changing the settings like this
But it’s actually driving us crazy
We’re all in a bit of a tizz
Someone must have Grandad’s controller
So own up – you know that you should
And if by some chance it turns out to be you
PLEASE turn all the settings to ‘good’
Diane Ball 201716th October 2019 at 4:53 pm #132538
Hi enjoyed your poem very much ,just have to Keep on going and not let the beast (MSA) take me over completely, regards Chris14th December 2019 at 6:00 pm #282018
Hi I have msa, problems like you all, that stems from this horrible beast. developed an hernia earlier in July went to doctors ,sent me to see a surgeon who said it needed repairing pointed out I had msa he had never heard of it, told him of my erratic blood pressure and he said he would speak to anaesthetist about this problem, I said I would be quite happy to have local anaesthetic he said he was not keen on doing operations like this on local anaesthetic as it puts patient and surgeon under more pressure but he said he would speak to him and put me on his list. That was in August I received a request to have a pre-operation assessment which I attended I took the necessary paperwork from the trust with all the telephone numbers of my carers and specialist in that hospital showed them to the nurse she pinned on to my records all the other tests were fine but she could not give me a date for my operation which I understood. Late November I received an appointment to have the operation at a day centre 13th of December at 7 o’clock in the morning I had to be there, I live in Cornwall, so it was a very early start for me and my wife 5 am arrived on time putting waiting room seen by a nurse asked me about medication. had the MSA brochure on top of my records but he still did not know what MSA was but he said he was sure it would be okay I was then met by the surgical team surgical registrar and assistant who marked the spot, they seem to know about msa and said they where sure it would be fine took me to another room I waited to see anaesthetist, anaesthetist arrived said my general health was good I mentioned MSA and he said he had just been looking it up he said he would not be too keen on giving me a general anaesthetic which I understood and would I be prepared to have a local anaesthetic I said I would because I wanted to get lump off of my body to make it more comfortable for me as it was painful as I have bowel problems, he said wait here I’ll go and see the surgeon it was about 9 30 am , I waited until 12:30 pm and then found a nurse to ask when I was going to have my operation she said she’d get someone to speak to me at 1 o’clock a gentleman arrived and told me he was very sorry but he would have to cancel my operation due to a medical emergency which I found quite strange as all the people on the morning list like me had been seen and they were now taking the afternoon list down to have their operation but I did not comment at this point, he then told me that when I come back I will be seeing another surgeon who would do the operation as I elected only to have a local anaesthetic , I told the gentleman that I did not only elect a local anaesthetic it’s what the anaesthetist preferred I also found it strange that I’ve got another surgeon , as in the first place the first surgeon said he did not like doing this operation on local anaesthetic t I thought it rather a coincidence that they had a medical emergency and I’ve got to come back and see another surgeon I then asked why they had called me in for the operation when thay were given four months to research my MSA problems but left it until I actually arrived in the hospital for the operation I found it even more frustrating that this hospital that I attend for to to see my MSA nurse and the research program so why hadn’t they not contacted them when I’d furnish them with all the phones numbers required and thay would have given them the necessary information to try and help, he could not tell me why this had happened but he apologised. At this stage I was very frustrated as not eaten since 12 o’clock last night it was now 2 o’clock in the afternoon the next day I paid £10 for parking and I felt I must tell someone to get this off of my chest I also contacted the hospital told them I did not want to complain but I did explain that there should be some kind of initial training for rare diseases and they agreed they said It would brought up at the next meeting but I don’t know if this will happen. my msa team I have are very good and they help me and my wife greatly but some of the other specialists I seen i.e. gi.gut problems physio therapists dieticians and urologist, are all in the same boat they don’t quite know how to help me I think it’s because they might make your condition a little worse and quite frankly it couldn’t be much worse anyway and Merry Christmas to you all happy New Year stay as positive as you can. Apologise for being so long , regards Chris.
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