Yesterday my husband got his diagnosis. He’s got Parkinsonism as opposed to Parkinson’s disease. The consultant explained everything really clearly and it did seem hopeful because she said that things should improve once the medication started working. She explained that she thought he has MSA and is arranging for him to have an MRI. So we came away feeling hopeful and more positive. That was until we looked it up online and now I just feel very scared and uncertain.
I’m very sorry to hear about what the two of you are going through right now. Between the uncertainty, the waiting, and the diagnoses themselves, it can be a very scary (not to mention taxing) process - my heart goes out to both you and your husband.
I’m glad you’re here though, and that you’ve reached out, because as shaky as things may feel for you right now you do not need to go through it alone. This community is here to support you and guide you in any way that it can so I do sincerely hope you find comfort and security here - ask, talk, and share as much (or as little) as you are comfortable with.
We have a number of community members who have gone through the same or similar experiences, so I encourage you to poke around the forum a bit and see what others have written over the years. There are many threads on MSA, such as these ones and these ones.
If you have specific questions or concerns about MSA or Parkinsonism I would recommend keeping in touch with your consultant, as well as any other health care professionals you may be in contact with regarding this. They will be able to help you better understand the condition and may be able to put your mind at ease a little. The internet is a great resource but it is often filled with extreme cases - and everyone experiences Parkinsonism differently.
I would also recommend reaching out to our advisers on the helpline. They too are there for you, to support and answer questions, as well as provide resources. You can call them on 0808 800 0303 anytime you need help or simply want to chat.
We’re all here for you - never forget that.
Hello Redjune1, I am not surprised you and your husband are feeling as you do. It is a worrying and confusing time and chances are you have never heard of MSA. You followed what would be most people’s natural reaction these days and that is to do a search. Here on the forum we would generally advise people not to read everything they can lay their hands on in the early days. This is because it can lead to information overload where it is difficult to see anything clearly or know which way to turn. It can also lead to people only seeing the worst possible scenario and this is what stays in their heads. I suspect this is what has happened to you. Clearly you can’t ‘unread’ what you have already read. I would however, encourage you to think back to what the consultant told you and that you were hopeful at that point. That’s where you are at the moment, at the start not the end. You can drive yourself to distraction worrying about things that might never happen and, in my opinion, the only way that works is to take each day as it ccomest because then you are dealing with reality not some hypothetical scenario which may or may not be accurate. Having said that I think it is worth having a conversation with your consultant regarding what you have read and your concerns so that your husband’s particular symptoms can be given both context and perspective. It is a harsh reality for us all that the diagnosis is what it is and wishing it different won’t change anything; you will gather from many posts on the forum however that folk do find a way to live with their diagnosis that is not all negative, maybe not straightaway but it does happen. I sincerely hope that once your husband’s treatment starts and you have ideally had an opportunity to discuss your concerns with his consultant life won’t seem quite so bleak and scary. Give yourselves time to adjust and get used to his diagnosis and what it means and then get on with the business of living life today. Today is only here for 24 hours, it’s not repeated. Worrying and being scared of an unknown future is understandable but achieves little and today can so easily be lost. Let us know how you are getting on. It’s not much, but I hope this has helped in some small way. My best wishes to you both.
Thanks Tot for your kind words. I am finding it all very confusing at the moment. Luckily the consultant is really good and helpful. I know we should try to remember that she was quite positive and try not to read too much about it. This forum has been helpful and realistic, thank you.
Thanks Joy for the links. I’ve read through them and one post sounds just like my husband, constantly feeling dizzy and problems with his eyesight, sort of blurred vision in my husband’s case. The post was from 2018 so I don’t know if I should try to contact them to see how they are now and what treatment they are on
You’re most welcome. I’m glad you were able to find a post that resonated with you.
I know a fair bit of time has passed since it was posted, but I would encourage you to reach out to them nonetheless. It doesn’t hurt to try!
Our community members are very compassionate and understanding - we have threads that revive after many years, conversations that spark up ages after the original post was made. Being able to find someone’s story that mirrors your own is tough, and takes time for many, so don’t worry about the date.
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