I’ve never done anything like this before…
Got diagnosed during the pandemic and have been told it’s aggressive. Going to start tysabri Friday but all this is a lot for me. Also have mental health problems.
just feel so alone
Hello Locky
Welcome to the forum. I’m so sorry you’ve had to find your way here, but now that you have, I hope you’ll find the fellow feeling and experience from the members is useful to you.
Tysabri is an excellent disease modifying drug. It is used for the more aggressive relapsing remitting MS, but it’s track record is great. It should reduce MS relapses by about 70% on average. This in turn should reduce any future disability.
In all honesty, you are fortunate to be given such a good drug. Although that sentence sounds strange; obviously you’ve been unlucky in having MS at all and having a highly active variety is doubly unlucky. But having Tysabri could even have a positive effect on your ongoing symptoms.
In your position, it might be very useful to start keeping a diary of your symptoms together with any side effects from Tysabri. If you have a tablet or smart phone, you can get an app that will allow you to easily keep track of your life and symptoms. I use one and have done for several years. I can quite easily look up the records of symptoms, relapses, etc. Which I do often in appointments with my various doctors.
Best of luck to you. Don’t forget, the users of this forum can help with questions you have about MS and treatments. You’ll also find that it can help just to share experiences with others.
Sue
Thank you, I’m just really struggling at the moment
Hi Locky, I’m sorry to hear of your news, I can relate a lot to what you’re going through right now as I only got diagnosed with MS last week, it was made all the more harder because I had to be told alone due to the pandemic no family could be with me in hospital when I was given my results. I just wanted to say you’re not alone in any of this, there are some fantastic support networks out there and people like myself who are all on this journey with you. Just wanted to show you my support and hope this brings you some comfort that someone is going through this with you.
Aw Emma, what a shocker, to be told alone, amidst the furore that is Covid.
You are right, there are many support networks available. From this forum, to MS nurses (a good one is worth his/her weight in chocolate, a great one worthy of gin!), to the other local MS Society groups, the information that’s available on this website and the MS Trust, and of course other fora, eg https://shift.ms/
Best of luck to you. Let us know if there’s anything we can help with.
Sue
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Hi Locky - sorry bout the diagnosis but you are not alone. I was diagnosed last week and still trying to come to terms with it. Please don’t be afraid to reach out if you want to chat/vent, whatever you might need.
all the best x