A couple of days ago, I was diagnosed with progressive MS. It took more than a year of begging different GP’s to refer me as my hand tremor worsened, they finally did and the news is of course a shock. Naturally, there is that temptation to research for hours and hours about MS but I understand that each person is different so I am not sure that will be a helpful exercise for myself. Nevertheless, I would love to hear your experiences and what the main things you done were to control this illness please. I am supposed to be referred to see a physiotherapist and would like to see occ therapist but with corona these are not likely to happen for a while. ’
So yeah, any tips from you guys would be great on how to manage this and slow its progression please?
Hi Yousif…so now you know what the hand tremors was caused by…maybe some other unusual stuff going on too, eh?
Having MS diagnosed isnt a cause to party, but also it isnt a cause to think your doomed and life will be hell.
Of course no-one wants to hear they have MS, but once you get your head round it and you get help from such as physio, an OT, an MS nurse etc…life will get better again.
Every person with MS differs from the next one. Progression varies so much and it can be slowed with certain drugs.
Reading up on it can help…but dont get carried away by everything you read.
We`re here for you pal.
Thank you for your reply,look forward to reading more on this forum about it…
you will be amazed by just how adaptable you are. We are all so very different so it is impossible to say how things might work for you. You are the expert on how you feel, you will learn to listen to your body and to develop your own thresholds for how you feel. My tips would be, try to establish good lines of communication with family and friends, they need to know when you are OK, or not so good or flippin’ awful so that they can adapt as well. Never give up pushing the boundaries otherwise you wont know where they are. If you can build a trusted support network of family friends and medical professionals to whom you can turn if necessary , this is good. Here is also a good place for support as there will be people here who know exactly how you might be feeling.
All the best
Thanks for this. I have told my family but I am cautious about telling friends as I just feel like they won’t see me the same way again, I don’t know its just the case that you can’t unknow this type of info after you know it. I just don’t want to be that guy who you speak to because you feel sorry for or with whom there is always an elephant in the room in conversations. Do you have any advice on this?
Yousif, you. are spot on with this (in my opinion) in my early MS days I was extremely selective about who i told. You should evaluate who needs to know. This also stands for work or colleagues. Some must know, some need to know and others will be a problem if they find out via someone else. Once again you are the expert on who needs to know and when. You might need to think about how you explain MS and how it affects you. Honesty is a good starting point but try to be aware of how the info will impact them. E.G my mum, was caring and thoughtful, and my dad was scared to bits. As part of your MS experience you will learn loads about yourself and others.
ts interesting to see how different everyone is! Like you I was diagnosed with PPMS in February. What a shock! I am just about getting my head around it. I didn’t look at much info at all for the first couple of weeks but slowly I have started reading more. My initial neurologist who made the diagnosis told me to carry on doing everything as normal for as long as possible. However with lockdown, I am now not working and the situation has helped me really think about how much work I want to be doing after all this. I have two jobs and am seriously thinking about stopping one by the end of the year. This diagnosis does put things into perspective.
What I am doing and want to do more of is exercise. I had a Facetime chat with a neurologist on Monday and we talked about the things we can control like diet, taking vitamin D and exercise. I am going to see a neuro-physiotherapist so I would definitely ask your neurologist about that. There is a group of people who advocate a vegan diet with fish. Their website is called Overcoming MS and they think that this kind of diet may help slow progress. Its certainly not for everyone but it might be worth looking at the site for ideas.
I did however tell all my family, friends and work colleagues very quickly. I know that news (esp bad) travels fast and I wanted to be in control of telling people, not them hearing about it from someone else. I also want to have their support and understanding for the times when I’m struggling mentally or physically.
Sorry I’ve rambled on but I hope this helps
Very early days and lots to learn and adjustments to make. You must absolutely tell the DVLA if you are driving. They I think will send your Neuro a form to fill out to say whether you are still safe to drive. If so you will then get a 3 year driving licence.