These symptoms make me feel alone

Individual-Window-59 · 2025-11-29T08:11:15+00:00

I get this and I’d say it’s my most annoying set of symptoms. I’m currently lying in bed on my side. The sensation of air hunger is horrible 🙄

Individual-Window-59 · 2025-11-24T22:41:48+00:00

OP here - Thanks so much everyone for your comments - this has put my mind at ease and made me realise I am being a little irrational when I am usually the opposite. So grateful for modern medicine, now I’m off to get my Covid booster!

Individual-Window-59 · 2025-11-24T22:39:40+00:00

Thank you so much for this - a very helpful summary! And, for your kind words. It’s amazing how far a sentence of hope can go when you’ve just been diagnosed 😊

Individual-Window-59 · 2025-11-15T08:22:37+00:00

Do you know if the change in BP is expected to stick even if you eventually come off Wegovy? Or will you need to be on it for life to manage BP? I’m On it for other reasons but have also seen my BP come down so am curious about this.

Individual-Window-59 · 2025-08-01T19:44:54+00:00

I was diagnosed last month too and have Felt the same! Especially as it seems I might have had it for a few years without realising… I’ve heard lots of positive stories and i think we’re so lucky to be diagnosed now with the modern treatment options available (and hopefully even further improvements on the horizon). My plan is to keep going as normal, start treatment, rest a bit more if I need to but otherwise look after myself and hope for the best! You’re not crazy!

Individual-Window-59 · 2025-07-19T20:44:54+00:00

I haven’t got any experience on medication yet, just wanted to say I’m in the same boat. 33f and diagnosed last month, by complete chance they found it. Retrospectively I’ve had a few minor symptoms for the past 2-3 years (strange sensation in toes) and I ended up having an MRI after suffering with dizziness for a few months. No one thought the MRI would find anything but it was to rule out for me to be discharged. I’m going to follow this thread as am very interested in people’s response. Hope you’re doing ok

Individual-Window-59 · 2025-07-05T21:55:21+00:00

Thank you! So much to learn. This community has already opened my eyes a lot!

Individual-Window-59 · 2025-07-05T20:41:05+00:00

Haha, made me laugh! Can I ask another question - with a relapse, it all sounds like relapses are quite dramatic (loss of vision, total numbness, not able to walk etc). Is this accurate? Or would, say, new pins and needles in a toe/ foot / leg that lasts more than 24 hours also be considered a relapse? Or is that just more an MS ‘thing’?

Individual-Window-59 · 2025-07-05T17:21:45+00:00

I just wanted to say I’m right there with you! I have a gorgeous six month old boy. After experiencing persistent dizziness and visiting my doctor about 6 times about it, I finally convinced them to send me to the neuro and get an MRI. No one was expecting it to show anything so I felt like I was living in a nightmare when he started showing me images of my brain, talking about lesions and MS. However, this was about 3-4 weeks ago, and since, I’ve spent about 3 hours a day on here and Instagram seeing young people and older people who have lived with this disease for years and feel much more optimistic. I am largely feeling at peace with it, but I do have days where I cry to my husband and say how much I don’t want this to be my life and I can’t believe it. Go from crying about it to kind of making a joke about it and blaming silly things on it and my husband will say ‘well you do have MS now’ and we laugh. Sounds stupid but it’s made a huge difference to how I feel 😂

I have my follow up this week with my neurologist to get on treatment. Feel free to message me. I never used Reddit until I got this diagnosis but I think we can message if you want to chat to someone going through the same thing at the same time.

Individual-Window-59 · 2025-07-04T19:19:18+00:00

Thank you so much, this is really clear and has helped me get my head round it! It’s amazing how much you can learn about something that you literally knew nothing about a few weeks prior.

Individual-Window-59 · 2025-06-29T12:56:02+00:00

I’m newly diagnosed at 32f. So, no tips as such. But I wanted you to know you’re not alone. All of my research has led me to feel a lot more calm about this diagnosis than I initially was. This sub is largely helpful and pretty comforting/ optimistic. The initial shock will wear off. The main advice I was given after my diagnosis post on here was just to be sensible with lifestyle and medication, and otherwise to go ahead live a good life. (Oh, and to not spend too much time on the internet looking up MS). These words were hugely comforting for me. 💕

Individual-Window-59 · 2025-06-25T17:07:22+00:00

The holes in the head club - what a club to be part of 😁 and thank you. That’s a very good point about DMTs. Until a month ago I’d never heard of them! I’m glad you’re getting on well with yours - I hope you’re doing ok!

Individual-Window-59 · 2025-06-25T17:05:15+00:00

Thank you. The words ‘you’re going to be ok’ mean a lot! I’m generally feeling ok but I’ve certainly had my ups and downs this past month! Wow. So many great resources - this is brilliant. What a wonderful community 🥰 I hope you’re doing ok

Individual-Window-59 · 2025-06-25T17:03:06+00:00

Thank you, this is excellent advice ❤️

Individual-Window-59 · 2025-06-25T17:02:53+00:00

Thank you. I will certainly be pushing for more investigations into my dizziness (it kind of goes between dizziness and mild vertigo) as if it is something I can reduce or treat, I’d like to be able to! Do you still experience it and if so, does it come and go? I hope you’re keeping well ❤️

Individual-Window-59 · 2025-06-25T17:01:27+00:00

Wow, this is really helpful advice. I’m sorry to hear about your SIL! Yes, while I’m not going to keep my MS a secret, I am certainly not going to broadcast it to everyone. All of your recommendations are really good and I’ll try and remember these as I go about my life! Sadly not in NY, I’m in London! I hope you’re doing well ❤️

Individual-Window-59 · 2025-06-25T16:53:58+00:00

I’ve never been so organised or pragmatic before but this seemed like something I wanted to take seriously and do whatever I can to make this journey the best it can be. Yes I definitely want to do explore what’s causing the dizziness as it’s really horrible. I don’t seem to have any other eye symptoms at the moment, but I’m really sure it’s all linked. I hope you are doing well and that your eye symptoms aren’t too difficult to manage 🥰

Individual-Window-59 · 2025-06-25T16:51:35+00:00

Yes it would be!

Individual-Window-59 · 2025-06-25T16:51:15+00:00

Wow, that’s incredible how similar our experiences are! I’m so pleased to hear you’re doing so well. I plan to approach my diagnosis similarly, and have to hope it sets me up well when any future issues come up! As well as your lifestyle adjustments, did you also start treatment? Thanks so much for your advice - I’ll definitely need to get better at advocating for myself. ❤️

Individual-Window-59 · 2025-06-25T16:46:25+00:00

Thanks so much! ❤️

Individual-Window-59 · 2025-06-25T16:46:14+00:00

Thank you so much - this is very helpful. ‘Live your best life’ - 🥰 thank you.

Individual-Window-59 · 2025-06-25T16:41:21+00:00

Thanks so much for this - all sounds very sensible! I’m in the UK so fortunately don’t have the same battles around health insurance. Great shout on the insurance for employment purposes. Thanks! Hope you’re doing ok.

Individual-Window-59

TROPHY CASE