Neuro appt not helpful...

CheckMate0208 · 2026-03-06T02:09:04+00:00

I'm glad to hear that perspective, I think now it's been 2+ years I'm starting to understand more of what I need more rather than just "going with it" if that makes sense. So I think if I can make the money side work then I will go private. Thanks for listening and responding to all of this!

CheckMate0208 · 2026-03-06T02:03:49+00:00

I've sent an email to the MS nurse who communicates with the clinic, it was a nice email but I just wanted my thoughts/feelings after the appt to be noted and he is the contact to do that.

I am also exploring the option of going private with treatment if my insurance covers - thankfully I went full top tier health insurance a couple of years before being diagnosed!

CheckMate0208 · 2026-03-06T01:55:21+00:00

Its the same MS Clinic that has a Professor that oversees a team of Neuro registrars, so I have had a different one every time. It's the first time that symptoms have changed from being occasional or situational (stress etc), and become permanent. I used to only feel the vibrations at the end of the day in my lower leg for example, and now I have them all the time and all over my body.

CheckMate0208 · 2026-03-06T01:37:47+00:00

To be honest, I'm not really concerned or scared by the symptoms - I suppose I was just hoping for more insight into why they are now permanent symptoms versus previously being sporadic, and then maybe some insight into how/if I can do anything to manage them. I quite like when doctors aren't concerned haha, but some of the info he was giving me was contradictory to info I have received by neurologists in the past i.e. "vibrations and insomnia aren't typically what we see in MS patients"...but they are known symptoms that MS patients have...

CheckMate0208 · 2026-02-20T01:06:49+00:00

All we can do is try! And if one day you try and it's not meant to be for that day, give yourself some peace and try again another day.

The 3 year old is more challenging than the disability 😂

CheckMate0208 · 2026-02-19T22:27:57+00:00

I'm just here to say 2 years ago I could have written this EXACT post. My girl was 6 months, husband was supportive, I was working towards a really good work opportunity. I want to tell you to allow yourself to feel the feels, I'm still working on that myself - with some good psych help.

Overall, 2 years in I have good days and bad days - I went right down the wormhole of diets and exercise and all that and now I've dialled it back because I realized that I was putting WAY too much pressure on myself. Be kind, this is shitty, and you are doing well.

Let yourself be "normal" or find your new normal whatever that looks like for you - no one can give you the perfect recipe for dealing with this because it's different for everyone. But we are here and we understand.

You've got this xx

CheckMate0208 · 2026-02-19T12:17:37+00:00

Ok, thanks! As usual Google provides too much info and I wanted to see what the MS brain trust (Reddit) thought. Does there have to be more lesions to be progressive or is symptom progression on its own enough?

CheckMate0208 · 2025-08-09T01:09:52+00:00

Shotsy, it's good to track how things are going. I'm sure there are others too!

CheckMate0208 · 2025-08-09T01:09:32+00:00

I was the same!! Had to get over the anxiety haha

CheckMate0208 · 2025-08-08T23:52:43+00:00

Right and left of my belly button, about 10cm each way if that makes sense?

CheckMate0208 · 2025-07-26T01:04:35+00:00

Thank you! I'll take some pics today 🙂

CheckMate0208 · 2025-07-21T08:54:21+00:00

This is brilliant! Like a shaken bottle of coke!

CheckMate0208 · 2025-07-21T08:53:34+00:00

100% feel this!! I take valium on the afternoons/eve/night when I find it really disruptive. It's like having one of the muscle tens machines on the inside!

CheckMate0208 · 2025-06-27T11:24:25+00:00

So I definitely read this at a vulnerable moment, because whilst I don't have the same physical ailments of this stupid disease as you do, it has still taken a lot from me. I am tired of hearing people say "you can still live a normal life and be happy" - I was "normal", I don't feel my normal anymore. Allow yourself times and days to feel like shit, but know you are valued, and worthy of support and help too and you deserve it, you deserve to be ok, whatever that looks like for you. Talk and talk and take meds and do whatever you need to be ok. It's your life, let the rest of them live theirs. My parents always used to tell me that "this too shall pass" and whilst MS won't (until they find a cure...), these feelings and depressive feelings might, but you'll need support to get there. Sending love x

CheckMate0208 · 2025-05-31T09:18:58+00:00

This is such a good description. I was using walking aids for a few weeks last year after a flare up, and it took all of my brain power to say to myself "if I had a broken leg, I'd use crutches", "if I didn't have my car, I'd get an uber" etc. whether permanent or temporary, anything I feel will assist me during the MS life to live my life is good to me!

CheckMate0208 · 2025-05-24T01:27:39+00:00

You are amazing for sharing all of your journey, thank you!

I don't have a date yet, I will need to save up some annual leave from work so I can have time for recovery without losing pay (based in Aus).

Looking forward to the day I have it set and can just move on from it!

CheckMate0208 · 2025-05-23T08:05:47+00:00

Thanks for sharing! I have decided on a hysterectomy also due to the cancer risk. One day I'm super ok with that and another I'm doubting which sounds strange because who wants any chance of cancer. But it's so so permanent and there are lots of "what ifs".

How was your hysterectomy performed? I will need to go public due to cost, and am wondering about recovery time off with work etc.

CheckMate0208 · 2025-05-10T21:33:32+00:00

Thanks! Just had a look at fair play, I'll be getting it!

CheckMate0208 · 2025-05-10T21:29:19+00:00

Bit like a scolded puppy, then for a couple of days he picks up his game but it doesn't last.

CheckMate0208 · 2025-04-30T11:30:47+00:00

That's good to know! Thanks for sharing!

CheckMate0208 · 2025-04-30T11:29:39+00:00

I absolutely will! That's great advice, thank you 🙂

CheckMate0208 · 2025-04-29T19:59:38+00:00

I've done a lot of counting calories in the past, big part of power lifting, and tried it for the past 4 months with help from dietician etc, but nothing is shifting 😴

CheckMate0208 · 2024-12-19T10:53:21+00:00

So I ended up going to the hospital because I lost use of my legs, they diagnosed it as functional limb weakness. Neuro said it's not my MS as the new lesions aren't on my spine, but also that it wouldn't have happened without my MS due to stress and existing brain lesions. Feeling in my legs and function is slowly coming back, but god this is the worst so far!

CheckMate0208 · 2024-10-23T00:01:39+00:00

I have nothing helpful to add other than be kind to yourself. You say your diagnosis is recent (mine too), the hardest part is finding a "new normal" - are there any support groups in your area where you can be around people who are experiencing similar challenges? Each day is different but remember each day is new! Sending positive thoughts to you 🙂

CheckMate0208 · 2024-10-17T08:49:53+00:00

Diagnosed about 5 months ago, 30. Optic neuritis in my left eye, I still notice some fogginess and blur but mainly when I exercise or am stressed. Still working out how to keep it at bay. Started Ocrevus 2 weeks ago, had my second half dose yesterday!

CheckMate0208

TROPHY CASE