I had to se my GP following receiving a letter from my neurologist advising about the MSA & medication will be needed to be prescribed by them.
It was 10 mins I won’t forget, he read the letter and then said ‘ I don’t know why they send you a copy, so misleading ‘probable’ might mean you don’t have anything apart from the symptoms the medication is for… I asked him to explain about pyramidal signs and the effect on MSA. He told me not to worry about about it just live your life and wait and see what happens and definitely not Google! I then mentioned ongoing shoulder pain was really bothersome, just take pain killers it will be unrelated to anything else! I left feeling like I was a hypochondriac! :(. I see a new specialist in the New Year following a move to a different part of the country until then feel a bit abandoned. 🥲
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Bizzyissy
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Hello Bizzy, What a total clot your GP is! I would change doctors immediately!
Since Jackie's diagnosis we have been lucky enough to have superb doctors who are very understanding, admit they know little about MSA and so are prepared to learn, and perhaps most impressively, very keen to have a second or third view from others who have more experience of the condition.
It sounds as if your doctor doesn't have the capacity to learn and so I would ditch him. Once you find a more understanding doctor; if you contact the MSA trust, they will send a pack to her/him giving information on MSA etc..
Having said all that, I do believe you should live life, be positive and enjoy what you can do, not worrying about the things you can't do.
Hi thank you I am moving areas end of January so hoping new GP might be bit more sympathetic! I am being referred to a specialist in Poole so hopefully will get more support then too.
I will try to be & think more positively but doesn’t help when people you see to support you end up making it worse. However my work have been amazing so least I can get back to some normality on that side.
Hi this sounds similar to our experience of seeing a gp. My husband was having terrible back pain and I spoke to his doctor to see if I could get some strong painkillers. He said he couldn’t give him anything and just take paracetamol because it was up to his consultant to sort it out. I ended up getting stronger painkillers from the out of hours doctor when Phil got to the point where he was crying with pain. The following Monday we had to see a different gp to get some more painkillers. This doctor was quite rough with him and, when Phil told him he was being investigated for Parkinson’s he said the pain was nothing to do with that and he would send him for an X-ray. Needless to say the X-ray showed that he had some arthritis, which at 67 is pretty much to be expected. However, later that week we saw the consultant who gave him the diagnosis of MSA and also said that the back pain would be caused by that.It seems like everything is a battle with our GPs playing god because they like to think they know more than the consultant, even though they know nothing about MSA.
Oh bizzyissyHow I feel for you. Fingers crossed you will get better support going forward. I try to feel sorry for these drs that don't understand, after being furious first, I've been there several times and felt like I was a hypochondriac. Ignore them and forgive them their ignorance or it will not be good for you. Positive vibes and support
We are so sorry to hear of your bad experience with the medical profession. It certainly seems to have resonated with others on here. But so thankful that there are some good relationships as well!When I asked how easy it would be for me to see my GP, a week ago, I was told that he was no longer there! When I asked how that affected my wife (with MSA) and the concept that the GP was a key person for her on-going treatment and well-being, there was no answer.
We have a telephone appointment this week with our new doctor.
Yes, we do understand that these are unusual times, and also understand that not everyone is acquainted with MSA......but...
I found it always paid to be pro-active...in other words getyour reply in first!
for GPs you walk in with abig grin saying "We have brought you a disease which most gps only see once in a life time in practice " (Implying aren't you the lucky one? )This pre-empts any guilt about ignorance and puts you on an equal footing .
the time willcome whe n you know much more than he does and you may as well accept each other as part of your support team.(Don't do the poor little me approach as the good dodtors won't need it and there are too many bad ones who cant resist the urge to play power games)
With the help of this site and the MSATrust you will have the best information you can get.
Dr Google can be a good source butcareful to avoid the nutters
With my husband and I's experience with GP's, you have to find one that actually wants to know more about the disease. We have gone thru 2, and finally found one that is interested in the disease and treating, rather than shrugging their shoulders saying, I don't know. Unfortunately though, you do need to realize that this is "just the disease". Many of the symptoms, neck pain, knee pain, etc you can spend so much time and money trying to find what is the cause and it ultimately comes back to MSA. I believe we have great doctors, and all are in agreement (even our neurologist who studies MSA completely). It's a horrible disease we are all hoping for a cure for, but unfortunately there isn't one yet. Yet!
My family member started with shoulder pain. That was her first symptom.
As others say - GPs just don’t know enough so use this board and the MSA trust to help educate yourself. I agree re random Google but there is so much experience out there.
Get on from foot with new doctor. Maybe worth writing them a letter and sending before your first appointment. You could tell them more about the condition and point them at the MSA Trust info.
so many doctors haven’t heard of it , we were lucky as my dads doctor had as his sister in law also had it so he knew more about than others , but i found msa trust really helpful and good to go to the support meetings as well if you can x elaine x
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