Appalling Treatment by medical professionals

[Redjune1]

Does anyone else have problems with so called medical professionals?

I’m just at the end of my tether with the way we’ve been treated. At our GP surgery there is one doctor who knows about MSA, we’ve seen him once and I’ve spoken to him a couple of times. He’s brilliant, really helpful and knowledgeable about MSA. However, now when I phone to get an appointment it’s always, oh his list is full but it doesn’t matter because all the doctors have your husbands notes. So we are seen by a locum who if you’re lucky might have googled MSA before speaking to you, but not necessarily.

On Saturday my husband had an appointment at opthamology because his eyes have been a big problem since he was diagnosed. We were pinning our hopes on them, but again we were wrong. My husband was told by an impatient nurse to sit up straight and hold your head up! If only he could. They knew nothing about the MSA of course and in the end the doctor concluded that it’s just your condition and that was that.

I don’t think I can cope with it much longer, I’m completely on my own caring for him but then to get no help from medical professionals as well, it’s so frustrating and disheartening

[Yanno]

Hello June, I am so sorry that you are having such issues. Sadly, we have found that we have to manage Jackie's health very much ourselves - we always start by saying "I'm sure you've not heard of multiple system atrophy because most doctors haven't...".We have been lucky that we have a fantastic hospice in Worcestershire and they have been a significant help. Is there a local hospice to you that could be of assistance?

I assume you have been in touch with your MSA Trust specialist nurse, if not that's a route well worth following and she may be able to recommend some support.

Have strength, be persistent and again, so sorry that you have to go through all of this.

Take care, Ian

[Redjune1 in reply to Yanno]

Yes the MSA nurse has been brilliant and really helpful.There is a hospice here but how do you get help from them? I thought they only dealt with cancer patients

[Westcott in reply to Redjune1]

Hello sorŕy you're having suçh problems. I also çoñtaçtèďthè Trust nurses and Katie wàs woñderful. She emailed me with sevèral suggestions one of whìch wàs to organise a ďèdìcatèd GP a nd Ì fòŕwàŕďèd thìs tò my ĢP of çhoìçe Not only is she òn board but because she is part tìme

[Redjune1 in reply to Westcott]

Thank you I will try that

[Yanno in reply to Redjune1]

Hello June, hospices vary around the country but most now offer support to anyone with a life limiting condition. They concentrate on 'living well' despite one's condition. Have a look at their web site or give them a call and simply ask how they can help. St Richards here in Worcestershire could not be more caring and supportive.

[FredaE in reply to Redjune1]

no definitely not and should accept self referrals and they are free.

. give them a ring and explain your position

[1burtonst in reply to Yanno]

I totally agree with the MSA trust nurses .I spoke to one and she made me feel so much better .they are so caring and will really listen to you xxx

[Westcott]

Sam Fitzgerald at the Tŕustþ offèŕs ñòn

.medical support thiñģsĺiķe whèŕèañďhow to geþ thiñģs ďòñè ,benefits ètçv

Sorry about typing....... another problem!

Keep your chin up

Sue xx

[Ruthi15]

Hi my husband was diagnosed at 59 we read somewhere that eyes may be affected so we went down the lens replacement route which did help greatly till he passed 11 years later xx

[Paul_and_Sue_Wood]

HiUnfortunately because MSA is so rare no one will have heard of it or understand it. We all have to become specialists to educate the professionals. Like Ian I start I am sure you've not heard of Multiple System Atrophy as it so rare so can I explain first as it will speed things up for both of us. I then start inam sure you've heard of Parkinson's but do you know what is going wrong.... I write a list of all the symptoms and keep this up to date, I keep a list of all the medication and its use. I also have MSA leaflets which are brilliant.

If I do all this it takes a few minutes and then guess what they are listening to me and are helpful. Never assume they know what your suffering with or if they've read the notes.

Use MSA trust all you can, find a hospice and shout for social services and organise carers to help you.

The journey is long and challenging with MSA but friends are out there. Just ask...

Paul

[AMBD]

Re hospice, initially my husband was referred to neurologist at local hospital but through local MSA meetings, see MSA Trust, discovered that a Doc. at our local hospice was conversant with MSA. We were then transferred to the hospice consultants. Apart from his appointments David then attended various day therapy events which was a great relief for me too as his main carer. Towards the end when things became very difficult David spent about 3/4 weeks in the hospice where his care was wonderful. Thankfully he spent a final night at home.I am now attending bereavement counselling at the hospice.

Do ask your local hospice. They are wonderful places and not only for the patient.

Courage.

Sending love.

Alex

[FredaE in reply to AMBD]

hopices are amazing and they get so frustrated when people think they are cancer and end of life only

[Helenhooter]

Oh I'm so sorry but I've had the same problems as you and it's driving me crazy. I'm now having trouble with my bladder and the GPs keep telling me that I don't have an infection because my sample only shows blood. I know I'm not emptying properly and sometimes I need to go about 4 times an hour. I've also been having troubles with digestion, blurred double vision, ice cold feet, no ability to sweat, sleep issues, unable to move, loss of balance all the time etc etc. The doctors just tried to tell me that none of it was related! I've been getting progressively worse over 4 years with still no firm diagnosis 😱

Unfortunately MSA is not well known even amongst medical professionals and my husband still doesn't seem to understand that I can't regulate my voice (tone, pitch and volume) nor my movements😂 but thankfully he still makes all my meals which I can still just about feed to myself!

Take care and persevere

Cheers

Helen

😄

[Suerocky]

Definitely I was diagnosed with multiple symptoms atrophy and since then no specialist appointments gps useless. The only information I have got is from MSA specialist nurse yesterday who was wonderful her name is Katie wrigg

[Redjune1 in reply to Suerocky]

I agree, the only help I’ve had is from the MSA nurse for my area, Samantha Pavey. She has done so much for me, she has contacted our gp and has given us lots of advice. I can’t imagine how we would have coped without her.

[Suerocky in reply to Redjune1]

Since I was diagnosed she was the only person I had spoken to who had herd of this illness. The only information I read was on Google and that was so confusing. I hoping I get some help now

[Redjune1 in reply to Suerocky]

The MSA trust sent us a folder with lots of fact sheets in it, they are also on the website. They are really helpful

[TK-67]

I'm so sorry you're experiencing this - when mum was first diagnosed we had the same. Sadly it's only a lot of 'shouting' that seems to get you anywhere. You should have access to a nurse with neurological conditions experience - they can help to co-ordinate and advise - your consultant should have referred you. I totally agree with the other comments on hospice, ours has been there for mum but importantly for me. Also your local council will have links for carers, it gives you support. The joys of a rare condition, it really shouldn't be this way. Keep coming back here - this is certainly something we all have experience of!

[1burtonst]

I know the feeling is just the same with my hubby .I know more than the specialist as I resurch things and this site is great for information and help .