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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.
Hi enjoyed your poem very much ,just have to Keep on going and not let the beast (MSA) take me over completely, regards Chris
thank you very much for your reply,Thanks for the good advice,
Best wishes Chris
hi thank you for replying , i have been given an apoiment for a colonoscope next week got it quick as only see gi last tuesday, should be fun as my blood pressure drops but thay have been told this . take care regards chris
Hi thank you for your reply i will give it a try regards Chris
hi thank you for replaying i see if it helps regards chris
Hi Diane thank you for the information,as they say all MSA sufferers have different symptoms , I find IT very frustrating as different consultants have different ideas thank you once again for the info . Regards Chris
Hi thank you for your reply, I have been referred to A movement disorder specialist just waiting for an appointment
I wish you the best regards Chris
hi peter thank you for your reply I have spoken to nurses on a couple of Times and they were very helpful good luck to you and your partner in 2019 regards Chris
Hi I have a probable msa I take Sastravi 100/25/200/ and I have now been prescribed clonazram 500 mg for muscle spasms I am wondering if Anyone take these together the doctor says that it will be okay, but as as new to this I wonder if there is someone that can advice me regards Chris