Last reply 3 weeks ago
"Hope is the thing with Feathers…

Hi anyone out there…
Hope all trying to keep safe….hard enough but gotta have some hope…

Was diagnosed early April after almost a year between appointments and tests..
I really thought I had it bad until I started researching into in more detail..
Some of my initial symptoms are really only starting to ease now..in stages…just as others seem to appear…guess the bodies checking out how it’s going to manage itself…??

Would have started treatment only for “State of the Nation”…at the moment…which has left me feeling very anxious…estimating starting treatment late September…maybe that can move closer if things get any better between then
Any helpful hints/tips/ideas?
Any helpful tips dealing with the weak bladder that’s getting me down atm..
Thanks
Stay safe…
Hope is the t

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highlander
1 month ago

@pauley
Hi and welcome to the club 😊
Under your post above you’ll see some boxes click on the one marked bladder and bowel.
That’ll take you to other posts made about what others have said.
Once opened scroll down and you’ll find videos that have been made with MS Nurses and Doc’s with their advice and guidance.
Hope it helps.


pauley
1 month ago

Thanks
Very helpful


vixen
4 weeks ago

Hi @pauley, yep, this is a particularly rubbish time to receive a diagnosis! You’re absolutely right, the effects of relapse are new to your body as well as ‘you’ and so you’re probabably in a situation where your body is seeking stability. Most of us have had appointments and monitoring cancelled for now, so you’re not alone. Use this time to really focus on balance. With sleep, exercise and eating. And not smoking. And tempting though it is, avoid Googling randomly. Always stick to registered site, like MS Society or Trust. Have a look at posts people have written on here about DMDs to pick up tips in advance of starting treatment. You’ll look back in this year and wonder how you ever got through, but actually getting the diagnosis is really tough, and that’s done now. You will be OK. There’s lots of support on here for you. Take care 😊


itsmewithms
4 weeks ago

Hi and welcome 😉 it is a topsy turvy time to join our club- that is for sure! I have had bowel and bladder urgency for the last few years. I think I am better managing it now which is mainly due to me listening to myself better. There were also good tips in Aaron Boster’s videos on the “down theres” that cover these types of issues. He also has a lot of other playlists that I have found valuable-

Also important to note that the #1 and 2 causes of progression are stress and lack of sleep…how much of that is actually caused by MS is the conundrum ;-0 But- just realize you can only do what you can given these circumstances and times. Until then focus on what you can do…do what you can physically to improve your physical condition, eat healthy, avoid stress, etc. Focus on what you can do and not fixate on what you can’t. That is, after all, all we can do

Take care and glad you found this resource of information and support-


pauley
4 weeks ago

Hi @itsmewithms

Thanks
Very helpful…planing increasing water intake


itsmewithms
3 weeks ago

Seems counter-intuitive but it helps!


amy_feltham
3 weeks ago

@pauley Welcome!

Do you have RRMS? If so it will feel awful at times (relapses) but this comes with phases of fewer symptoms (remission), when you get to use all the resilience, tolerance and clarity that you developed to deal with the relapse for better purposes. Remissions can last years. So you probably did have it badly at first but symptoms will (or possibly are) reduce as you move into remission. That’s a really good thing

Diagnosis is hard. It’s ok to mourn life as it could have been. It really be wouldn’t be normal to be positive about having MS all the time, although some can put up that appearance. It is shit. It’s just not always shit.

I had bladder problems (frequency) and saw the nurse in the continence clinic who put me on a medication that has worked miracles for me! I know in my area they’re running phone continence clinics so you may at least be able to get bladder symptoms under control in “times like these”. You can get referred through your GP or MS nurse

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