Feeling isolated & not being listened to.

[Bizzyissy]

We have just moved house and signed up with a new doctors. I was speaking to her yesterday and she said. ‘ are you sure you have this MSA?’ ‘ Who told you have? ‘ so after explaining yet again, I was just totally brushed off as if I just had a cold. Still waiting for a specialist appt in new location to come through as was referred in October! I feel like I’m being treated like a hypochondriac & no one listens to me.

[Hellebelle]

Hi Bizzyissy,

It made me really sad to read your post. Unfortunately, there still seems to be so much ignorance about this condition. Is it worth trying to do a bit of education? There are some good resources on the MSA website which can be printed off. I did this to good effect when dad was in a Community hospital. To give them their due, they were receptive and wanted to understand his condition.

It must be so frustrating for you, especially since you have waited so long to see a specialist. Unfortunately, the NHS is struggling to see people in a timely manner. Our experience was that once dad had seen a specialist, things happened more quickly to put support in place.

Thinking of you at this very difficult time and wishing you strength.

Helen xxx

[Bizzyissy in reply to Hellebelle]

Thank you 🙏 xx

[labelletwig]

I am so sorry to hear how you have been treated. We found a similar situation when mum was ill in that her three GPs were totally unfamiliar with MSA. One responded well and was open to the MSA Trust's GP information package and to listening to mum and to the family. The other two GPs were less open, had too many competing priorities on their time and seemed to have no desire to learn or expand their experience.

I do have a controversial suggestion.......Mum's practice nurse suggested that she became an outpatient at the neurology clinic at the local hospice. We all initially shied away from the suggestion as we did not feel the time was right for hospice care. After some persuasion mum attended the clinic, and I went with her. It was the beginning of a complete change in the care and support mum received. The hospice palliative consultant (with a special interest in neurological cases) was text book of a perfect doctor and one of the most compassionate human beings I have ever encountered. He became a champion of mum's care and was happy to intervene and advise with the GP and nursing home. He had a lot of experience of MSA patients and was always able to advise on how best to treat the ever-worsening symptoms. Mum was treated with such kindness, care and continuity at the hospice that she refused then to attend the neurology clinic at the local hospital (who had little MSA experience) and had all appointments at the hospice outpatient clinic.

Towards the end, the consultant was happy to be called at any time to advise and recommend a course of action. Whenever there was a crisis of care, my parents always wanted to know his view.

I recognise that to seek hospice help my not seem appropriate but for my family it became a place of serenity and calm, where mum's condition was recognised, where the staff knew mum and were always so very helpful and knowledgable. I accept that my mum's situation may also be very different to your own.

I wish you good luck and strength and hope that you are able to get the help and support that you need and deserve.

Best wishes,

Gaynor

[Bizzyissy in reply to labelletwig]

Thank you so much, I’m still struggling with coming to terms with it which isn’t helping but will look into it.

[FredaE in reply to labelletwig]

it is ALWAYS the right time to refer your self to your local Hospice for so many reasons

first. they deal with life limiting diseases as well as terminal illness, which includes msa

second .they are not part of the nhs so are not bound by whatever regulations are in force but because they are so respected they carry lot of clout with the nhs. They are free to go about things differently if they think it is the right thing to do .

third. if they do not know about msa, they will be keen to learn

fourth .they care, both for the patient and for the family

fifth. they get very little funding from the government and depend on local fundraising. Communities won.t support a poor quality organisation

by the way there are many diseases called M something some of which arenot regarded as "real" illnesses. You will find that in a world where the average gp will only see one case in a lifetimes practice that it causes confusion to use the initials. ALWAYS refer to it by its full name of Muliple System Atrophy unless you are talking to some who knows. Most of the professionals will not know unless you tell them

[Debbie5 in reply to labelletwig]

O I agree with you completely on this. We resisted going to the hospice because it felt wrong and we were not ready to do that. But once we got there, we also encountered a whole team of knowledgeable, kind, and helpful people, who assisted us with so much, in terms of medical, occupational health, physio, groups and more. I cannot praise them highly enough. I also say, keep this is your mind when you ready. I wish you the very best with your treatment, very best, Debbie

[Helenhooter]

Hiya

I know exactly how you feel. I have been unwell for nearly four years and have found my GPs practice absolutely useless. Dismissive of any problem. I felt I was treated like a hypochondriac. They told me that all my problems were not related and usually packed me off with various medications which I used for a few days and then abandoned because they made me feel far, far worse. I am glad I listened to my body or the medications could have had serious consequences. I asked them last year to refer me to the local hospice and they said it was not appropriate. The MSA trust sent them information but I don't think they've done anything with it. I sent them ataxia details 2 years ago but they haven't done anything with them either. They referred me to an epilepsy consultant ( which I waited over a year for!) when I asked for an ataxia specialist. Unbelievably inefficient. I am seeing a second consultant neurologist now as the first said that everything was normal! I have my first movement disorder clinic appointment next month although I'm now in a wheelchair and struggling. Just 9 months ago I could walk 5k unaided! The decline has been rapid. I can't really stand anymore. My MRI scan has shown atrophy of the cerebellum so at last they've stopped thinking I have FND. I never thought I had that as it usually causes blackouts and seizures which I've never had!

We have to hang on in there and persevere. Just because they are ignorant we don't need to be. I have also subjected myself to a research project into diagnosis of MSA in London. I'm hoping the doctors will eventually realise that they need to be more open to rare conditions.

Keep trying, I feel for you but we are all with you.

Love

Helen

😊

[FredaE in reply to Helenhooter]

hospices take self referrals

[FredaE in reply to Helenhooter]

you are right. The MSA Trust in London is the source of information and support and has nurse specialists who know . Contact with them is a must and they will help you educate your profesionals. Don't blame them for not knowing as it makes no sense to train for a disease they may never see but only blame them for not being willing to listen . Remember ,everyone, we are here to help or to listen to a rant, We listen and we understand

[Helenhooter in reply to FredaE]

🤗😘

[Crumpetthecat]

Hi, we’re moving. Hopefully very soon 🙏🏻 So your plight was of interest to me. We ( my husband) has had four different neurologists advice us that my husband has MSA. We think we are quite a long way down the road. As the specialist has said due to other co morbidity’s the condition wasn’t obvious. Now it is and has been declining rapidly. We are just taking each day as it comes. We can’t stop it. However your post interested me. As we too are relocating so we will have to change gp and probably specialist. I assumed the current specialist we are under does the referral to the area in which you move to. Also from what we have found out the gp also transfers the care and I assume a note about the MSA diagnosis.

How has your move gone? I’m very interested as we will be in a similar situation to you.

Also it might be worth chasing up the new one if you’ve been given the details or contacting the MSA nurse who maybe able to help you. Good luck 😊

[Bizzyissy in reply to Crumpetthecat]

Thank you for your reply. I was told yesterday that it could take weeks for notes to go across so they literally are starting from scratch with me and the appt really didn’t give me enough time to go over anything other than basics. Thankfully I was able to order enough tablets from my previous surgery to cover me until my next appt!

My referral to see the specialist was sent in October when we first found out we were moving so hopefully coincided with the move but yet to hear. I am going to contact my old one to see if he can chase it.

The move was exhausting and almost overwhelming. It really told me how much I cannot do although surprised myself how much I can! However working full time and coping with everything else is taking it’s toll!

Xx

[Crumpetthecat in reply to Bizzyissy]

Bless you, I really do feel for you. I hope it was worth the move. Hopefully the medical side will catch up. But no harm in chasing things up. Sometimes they need a reminder that your still waiting. We have found the MSA nurses support invaluable to us as they can also liars with the specialist. So if you haven’t yet contacted one I would very much recommend as they can support you through all of this that you have to navigate. Good luck, hopefully all improves soon 🙏🏻😊

[Niknak74]

I'm so sorry your having this experience and feeling invisible, it's unforgiveable whatever condition a person is experiencing to be treated flippantly.

It sounds a little laborious to begin with but my husband Paul kept a paper which stated the month and year and when he experienced every new symptom, including who he'd seen whether it be OT, GP or consultant etc and a very brief outcome of the appointment. Every time he experienced something new or a new appointment we added to the paper and it was handed to each new professional because it was just too much to go through the whole situation again verbally and you can't remember everything can you in the moment? and also because we got to a new professional sometimes before the paperwork did. I'd ask them to read it before we started the qppointment! Paul became very adept at getting professionals emails and began emailing it to them prior to his appointments and asking them to read it before he arrived! Just a suggestion to make sure people get the full story quickly with minimal effort on your side.

I agree you should always call it by it's full name and not just the initials as awareness needs to be raised amongst professionals. And I also agree hospices from what I've read on this forum have been a wonderful source of support and help so that's definitely worth looking into.

This is the time when you have to make professionals listen to you, politely of course, but assertively. Your GP needs to be reading up on MSA and if she doesn't understand your needs and the impact emotionally and physically of MSA, it is your absolute right to request a GP who is willing to listen and try and understand your situation. Don't waste precious time working with professionals who aren't going to give you that support because your energy should very definitely be spent elsewhere, like in looking in after yourself.

Nicci xx

[Balalan]

I must be exceptionally lucky for I have a very supportive family; an excellent consultant and a highly sympathetic GP (in fact, the whole surgery.) Personally, I think, what is important is the condition not the name attributed to the condition

Stand your ground; YOU are the patient, THEY owe an acceptable service you are entitled to.