Hello - newly diagnosed

Hi everyone. I was technically diagnosed with MS about 2 weeks ago.

I had my first episode in 2021, when I woke up one morning with sensory issues in my lower legs (like pins and needles but not the same), which then moved to envelop my lower body up to my waist. This also came with a girdle sensation which made it feel like walking was difficult. I was sent to A&E by my GP (who immediately suggested MS) but the doctor I saw there instead diagnosed me with a syndrome usually associated with wearing too-tight trousers, which was hilarious given that it was the middle of lockdown, and I hadn’t worn anything more restrictive than jogging bottoms in months. I went away feeling stupid but also frightened that no-one seemed to care that I could barely walk.

Two days later with no improvement I rang 111, and on their advice, ended up in A&E again. This time I fortunately had a more experienced doctor who promised that I wouldn’t leave without getting some kind of resolution, and she was able to get me into the neuro hot clinic. The neuro consultant suspected CIS/MS and ordered an MRI of brain and spine, which revealed a spinal lesion. At this time I was told that as there were no significant lesions on my brain, the diagnosis was CIS. The odds for CIS moving to MS aren’t great, and I suspected at this point that I was going to end up with an MS diagnosis eventually.

Luckily, my sensory issues completely resolved within 4 months.

I contacted the MS hot clinic a year later following some weird symptoms I experienced while traveling (this turned out to be migraine with aura). I was unable to have an MRI at this point as I was pregnant, however, it did get me back in the system so I was able to have regular follow-ups with a neurologist. Once baby was born, he gave me the option of having another MRI, but I felt he was trying to steer me against it, saying that it could open a can of worms, and that the evidence for early treatment was not conclusive. I chose to have the scan anyway as I wanted to be able to make an informed decision on whether to start treatment or not.

This scan showed a new lesion on my brain, and there you have it. MS diagnosis - ‘technically’. I’m now waiting for the follow-up from the MS Clinic to discuss treatment.

Sorry for the long post, just wanted to share my experience. It seems straightforward compared to some I’ve read but trying to get somebody to take me seriously when my first definitive symptoms showed up was pretty harrowing! Nothing like trying to project manage your own illness when you’re feeling like crap :upside_down_face:

Currently feeling quite conflicted as I don’t believe I have any new symptoms, so the diagnosis is quite hard to accept, but here I am anyway :slight_smile:

Hello VB,
Yes the MS hug feels like wearing a really tight girdle, I can empathize; it may explain my thoracic (mid-spine) lesions.
My brain lesions are on the brain stem recently, which possibly explains my swallowing difficulty and tinnitus in left ear.
It took me a second diagnosis much later after initial dx to finally concede I really have multiple sclerosis.
A bitter pill is never easy to take and took me 9 years to swallow.
Best regards,

Hi VBee. Bit strange for the Neuro to say that evidence for early treatment wasn’t conclusive. I suppose he might be right in so far as so much in MS isn’t definitely conclusive but the growing view seems to be best to treat early ( which seems plain common sense to me - why wait for the immune system to destroy and weaken more of the CNS?)

Nice to meet you VBee!

I think you made absolutely the right choice: it’s much better to know what you’re working with so you have access to resources, medication options and help. Also so you can understand what’s going on with your body - before my diagnosis (which also took way longer than it should have for the same reasons, never being taken seriously by medical professionals) I found all the weird things happening so troubling. Now I’m much better equipped to handle changes and symptoms.

Shame on the doctor for projecting fear instead of looking to confirm and possibly treat the condition. If understanding and treating the body’s ailments is “opening a can of worms” to them, I don’t think they’re in the right profession. Good on you for taking the tests anyway and advocating for your health.

Hope you keep well, take it day by day. :smiling_face:

Not conclusive? Gavinitis or flipping the pyramid - by Gavin Giovannoni (substack.com)

1 Like