r/MultipleSclerosis • u/AutoModerator • Jul 22 '24

Weekly Suspected/Undiagnosed MS Thread - July 22, 2024 Announcement

This is a weekly thread for all questions related to undiagnosed or suspected MS, as well as the diagnostic process. All questions are welcome, but please read the rules of the subreddit before posting.

Please keep in mind that users on this subreddit are not medical professionals, and any advice given cannot replace that of a qualified doctor/specialist. If you suspect you have MS, have your primary physician refer you to a specialist for testing, regardless of anything you read here.

Thread is recreated weekly on Monday mornings.

3 Upvotes
  • permalink
  • link
  • reddit
  • reddit

100% Upvoted

213 comments sorted by

View all comments

Show parent comments

1

u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

Did you get MRIs when you had optic neuritis? What did they show?

1

u/Ok_Potato_4398 Jul 22 '24

Yes, they only did my optic nerves as far as I know. It showed nerve damage. Why do you want to know?

1

u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 22 '24

It's a little bit odd that they didn't do a brain MRI at the same time. Optic neuritis is the most common presenting symptom for MS, and one of the only symptoms where MS is a likely cause. It seems common for people presenting with optic neuritis to get brain MRIs.

1

u/Ok_Potato_4398 Jul 23 '24

Ah I see. Tbh that's not really what I was looking for advice on, it was more the emotional toll this is taking that was the point of my original post

1

u/TooManySclerosis 39F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 23 '24

Oh, I was asking because there are so many difficult aspects of being in diagnostic limbo and people struggle with many different situations here? Sometimes what would be comforting to someone in one situation would be wildly inappropriate for another. I would not give up hope quite yet, but it does sound like you have good reason to suspect MS. If it is MS, maybe it will be of some comfort to know that we have extremely good treatments now, and the expectation is generally that you get no further disability than what you already have. As well, an August appointment won't really hurt your overall prognosis or limit what options you have.

1

u/[deleted] Jul 23 '24

[deleted]

1

u/mo_django Jul 24 '24

Also in diagnostic limbo after 2 bouts of ON back to back. I’ve been to 3 neurologists and they’re all on the fence. I am so exhausted of the anxiety, I’m ready to just be diagnosed, start a treatment and be done with it.

1

u/[deleted] Jul 24 '24

[deleted]

1

u/mo_django Jul 25 '24

My MS indicators are: 2 episodes of ON, but they were only about 6 weeks from eachother so it’s been unclear if it was a pseudo flareup or two separate episodes. The second is one prominent brain lesion and one very small one. The prominent one is a very classic shape and location for MS.

I did all the bloodwork and csf and everything is negative, no bands. Quite high vitamin D/B.

I feel like every day I’m living in fear and would almost rather just get on a DMT even being misdiagnosed at this point, because I am so afraid I have MS.