MSA Trust Community Guidelines

[EmmaMSA]

Welcome to the MSA Trust Community at HealthUnlocked!

The goal of our community is to provide an open, supportive, informative, respectful and friendly community for anyone affected by MSA.

This site is moderated by the MSA Trust Admin team and HealthUnlocked.

Important: Posts on this site can support, but not replace the information and advice you receive from your Neurologist, GP, or other Health and care professional. Members who post or answer questions on the site should not be assumed to be healthcare professionals. For specific information and advice about MSA please contact our MSA Nurse Specialists at [e-mail].

The below summarises shared rules to ensure all our members feel supported and safe using our HealthUnlocked Community :

• By using this Community, you agree to post information that is primarily drawn from your personal experience.

• We encourage all posts to be kept under a topic and posts should aim to be kept on topic.

• A new post should be started to discuss a new issue or question.

• Content must never be abusive, malicious, deliberately misleading or fake. Any posts or comments that contain negative or harmful references to others, or which have the potential to be harmful to others, will be deleted.

• Community members may describe their own experiences of using alternative therapies or treatments. However, these will be personal and should not imply any endorsement by the MSA Trust . We will only post details of treatments where there is research-based evidence to show that they are beneficial for people living with MSA.

• Users should not promote the use of personal treatments used to others.

• Members should not post personal information of any kind on the site.

• Posts that promote a product may be deleted.

• You must be 18 years old or over to use the HealthUnlocked platform.

Community Members should always discuss their personal medical situation with their consultant and health care professionals. Information given on HealthUnlocked should never be used as a substitute for medical advice from your Doctor, Specialist or Health Care Professional.

Those who break these rules and guidelines repeatedly may have their account suspended or be banned entirely.

The Trust reserves the right to summarily delete posts and suspend or ban users showing persistent disregard of the above rules.

Both these guidelines and the HU guidelines are subject to change at any time without notice. If you have any concerns about posts or users in the HU community, please contact [e-mail].

Thank you and we hope you enjoy using the MSA Trust HealthUnlocked Community.

[2georgepheobe]

Can anyone help me iam recently diagnosed with MSA feel alone and lost only read about it online. I can't walk unaided speach is bad no one understands what I'm saying.is there anywhere I can talk or get written information about treatment and what is happening to me. I live alone and finding things hard now

[EmmaMSA Partner Staff in reply to 2georgepheobe]

Hi,

Sorry to hear you're going through such a difficult time at the moment and I understand how difficult things must be. Here at the MSA Trust we can provide you with lots of written information about MSA and various symptoms. If you like you can email us on [e-mail] and we are more than happy to either email you back with fact sheets or we can pop them in the post for you. The full range of fact sheets can also be found on our website - msatrust.org.uk/support-for....

If you wanted to talk to someone our MSA Nurse Specialists are here to help. You can call one of them to discuss any questions or concerns you may be having and receive advice on things that might help and support you. All three of their contact details can be found on the bottom of this page on the website - msatrust.org.uk/support-for... or you can give our office a call on 0333 323 4591 and we will get them to call you back.

I hope that is helpful and please do let me know if you have any questions.

Best wishes, Emma

[2georgepheobe in reply to EmmaMSA]

Thanks for your prompt reply, I will download the information you have sent and phone number I can contact someone if l need to thanking you so much for your help.pauline

[EmmaMSA Partner Staff in reply to 2georgepheobe]

Hi Pauline,

That's no problem at all - we're more than happy to help you. It might also be helpful for you to do another post on this HealthUnlocked forum under one of the topics. That way people will hopefully reply to you and you can get communication going with some other people affected by MSA. Let me know if you need any help with this.

Best wishes, Emma

[Diane831]

Hi Pauline. Do use the help that the MSA Trust can offer. they are so understanding and down to earth and approachable. Don't feel alone. You can email the trust nurses if you are concerned about your speech on the phone and they will reply.

Diane

[Hidden]

What do I do now? I'm 53 and I was diagnosed with MSA yesterday. I can't pee without a catheter, I never poop anymore, I'm dizzy and can't drive. I fall, I'm afraid to take a shower, I don't want a nurse and I'm home alone. What happened to me?

[EmmaMSA Partner Staff in reply to Hidden]

Hi Clara,

I'm so sorry to hear that you're going through such a difficult time. I think it would be best if you contacted one of our MSA Nurse Specialists who will be able to give you information and support. You can find all their contact details here - msatrust.org.uk/support-for.... I would also encourage you to register with the Trust and we can then get a membership pack that's full of information sent out to you. You can register easily by following this link - msatrust.org.uk/support-for....

Please do use the 'topics' on this forum to find out more about MSA and get in touch with people going through similar difficulties.

Kind regards,

Emma

[Hidden in reply to EmmaMSA]

Thanks!

[Teresa5 in reply to Hidden]

I live alone to I use a chair all the time in and out as fall over I am 52 and was told I had m s a two years ago I am sorry for you ,but if you need anything get in touch .

[Diane831 in reply to Hidden]

Hi. I hope that you have got the info from the trust now and are able to take it in a bit at a time. you will find it helpful to understand what is going on and then you can get the help that you need in a way that is right for you.

Rubbish disease but people on he forum will listen as we all have or own journeys as patients or carers - not that anyone else symptoms will be exactly like yours.

Post something under another topic so that people will see it more easily

Diane

[ilhana]

Please go for Ayurverdic treatment which now is NSH approved . I am in India for treatment and I see improvement in speech in one week, it will take time so please persevere.

[Pelley]

I have been a healthUnlocked member fo r16 years after being dx with PD, thru DBS and all the related drgs and issues expected. I am active physically and do yoga/pilates/walking when my body lets me etc. It's been an ever changing never ceasing experience to date so I guess nothing surprises me. Recently I visited (started training) my 6th resident Neuro. during his initial work up and exam with me I complained of some family recent goings on, prompting many questions from him about walking, galling, muscle control, breathing, blood pressure and temp all over the place etc. He's on the "band wagon" to add MSA to my longtime PD dx. Ive noticed progressions worsening but was just expecting a directive to increase Carbidopa and a visit to my DBS programmer. Sort of a kick in the teeth I guess. Help????

[DemelzaMSAT Moderator Staff]

Monkeyfeet1 here they are