new to this, help

[MARG190]

hi ,my name is margaret and 2 weeks ago i was diagnosed with M S A !!! I live in south wales, my Gp has never heard of the disease,im only the second person my neuroligist has treated. I'm sill waiting for an appointment with the parkinsons nurse they cant tell me how long i've had the disease but 4 years ago i was diagnosed with sleep apnoea and reactive dream syndrome.Following 2 knee replacements both with spinal anaes (the second anaes going into my chest,,,,frightening ) i had bladder problems and started becoming breathless .A short while later stridor began, after several hospital apps over a year i saw (privately) an ENT consultant, he diagnosed paralysed vocal chords.6 days later i had a trachaeostomy. is this normal for MSA, no-one can tell me. At the moment i feel in limbo with nobody to talk to.Is there a support person in south wales ? xxx

[FredaE]

Hi Marg.

MSA is a horrible disease full of uncertainties. It is a pick and mix sort of disease with everyone's selection of symptoms different and I am afraid progressing with time in different ways at different rates. No wonder so many of us patients and carers think that the time you are first diagnosed is the worst time of all because no one has heard of MSA and it seems that no-one can help you. I am afraid that there is no cure but there are many things that you can do to make living with it easier. That's where this forum comes into its own.We all know what you are going through and we are all willing to share our experiences and solutions and to listen sympathetically when you want to let off steam

Have you been in touch wih the nurse specialists at the MSA Trust in London? There are four of them who are hugely knowledgable and very helpful. The Trust itself publishes information for you to download on all aspects of MSA and runs local support groups. I would recommend you start by contacting MSATrust who will point you in the right direction

Good luck and come back and let us know how you are getting on

FredaE

[Yanno]

Hello Marg. I can only echo what Freda has said, its such a shock after first diagnosis mainly because so few people know what to advise.

The first place I think should look for information is the MSA Trust web site at msatrust.org.uk. You will find information there about the work of the specialist nurses as well as a host of information sheets that you can download. The specialist MSA nurse for South Wales is Jill Lyons who is also responsible for our area in Worcestershire. Jill was a fantastic help to us when Jackie was first diagnosed and you can email her at [e-mail] if you have specific questions.

Sadly if you look through some of the past posts on this site you will see that there’s no ‘roadmap’ for MSA - that’s one of the things that makes it such a horrible condition. Everyone seems to have their own journey passing similar places but not necessarily in the same order or degree as others.

Of course there are also so many people in this HealthUnlocked group who will answer specific questions or will be a listening ear.

Take care, Ian

[Alisonleicssupport]

Hi

It sounds like you have been experiencing typical symptoms. As previously said no 2 journeys are the same. The Trust will provide yourself and your gp with a support pack. There are lots of factsheets available on their site. There needs to be more awareness. Something we all work hard to try to do.

Good luck and make the best of your time xx

[Diane831]

Sorry to hear about your diagnosis and glad that you have found your way to this forum. Not much to add but just to add my voice to the others advising you to be in touch with the MSA Trust. Join for yourself and get the pack sent to your GP and then as you meet professionals who will be involved with you ask them if they would like a pack and give them the trust details - there will be leaflets in your patient pack. And most of us find that it is best to always say you have Multiple Systems Atrophy so there is no ambiguity and people don’t think you have MS!

You aren’t the only person who’s GP has never had an MSA patient before, it is the problem of having a rare disease, And you certainly aren’t alone going through this so do keep in touch and ask any questions you have.

Diane

[chester2107]

so sorry to hear this , must have been such a shock for you , my dad was the same when he was told , but he was 80 years old - i hope you have family around you, and am sure this group will help

i have only just joined myself x

[SilentEchoes]

I'm sorry. I learned there is a mouse model for MSA. Cannabis was therapeutic in preventing the disease. MSA is multufactorial and shares features of NMD. I think you need to hit it from all sides including detoxification. And you need the support of a functional medicine practitioner. The disease moves fast and you need to act quickly. I'm sorry to report that some anesthesia drugs are contraindicated for use in persons with neurological dysfunction and can exacerbate degeneration. I happened upon some recent research using high dose melatonin (300 mg) rectally. It's a powerful antioxidant. You have nothing to lose and may be able to slow or stop progression. Look at ALS therapy as well. My prayers go with you.

[Hidden]

Hi Marg, my wife has the MSA and I am her main carer for the past 5years, we also live in South Wales UK and i appreciate how dificult it is to access a good neurologist in this area so we went private and got far more success that way. I would not recommend using cannabis as it lowers blood pressure (the main symptom already in MSA) and it adds to the throat paralysis problems, plus it is still illegal in the uk and doctors will be reluctant to help you if you self medicate in that way. I am now quite familiar with how to get on in South wales with this condition so if i can be of help just ask.

Kevin

[Teresa5]

I live in Suffolk but have m s a and I am 53 if you ever need to chat I am here but I can’t advise because really we are all different I talk to Sam she is my nurse spealist and she is brill x