MS pre-diagnosis - I'm spinning out of control!

[LittleScottish]

Hi all,

Was hoping for some reassurance (I think. I don't know what I need, to be honest), as I am driving myself absolutely crazy pre-diagnosis, and my anxiety is through the roof.

Was diagnosed with optic neuritis 8 weeks ago, for the second time in 4 years. The first time wasn’t too bad but this time it has knocked me for 6 – lots of pain, and my eyesight is still severely up and down from day to day.

I’m currently under the eye hospital and have had all of the required eye tests to rule out anything sinister, including a brain MRI. Haven’t had the results back on any of these yet, but have an outpatients appt with the neuro-ophthalmologist in 2 weeks.

In the meantime, I’ve been Googling MS ,(I know, I know!) as I know that multiple bouts of ON doesn’t bode well.

However, the more I read, the more that diagnosis would seem to fit, and things have been going on for ages that I’ve put down to other factors (stress, being overweight, clumsy, pissed ;-)

So in addition to the ON I have: BPPV (vertigo), pulsatile tinnitus, synaesthesia (I see a bright flash in my ON affected eye, when I hear a loud noise in the dark, such as DH coughing! This is a bit weird, but is a neurological disorder, so could be linked!), lower back pain, knee pain and pain in my Achilles tendon (again, all on the same side as my ON, but could be weight related as I’ve let myself become a biffa.)

I’m permanently exhausted, seem to be suffering from regular bouts of the runs – can’t reconcile this with stuff I’ve eaten, I get twitching muscles on my affected side – could be thigh muscle, finger or somewhere random like my lip.

I’ve had a couple of instances recently where my back has really twinged and I’ve dribbled some urine, my regular periods seem to have gone a bit loopy this month (deffo not PG, and at 38, would hope it’s not quite time for the menopause).

I seem to have fallen over quite a few times in the last few years – not all wine related!

I also get regular headaches, have developed quite a short attention span, feel quite down and sometimes struggle to take a deep breath.

So it sounds quite damning, but then, with reading about MS symptoms, it seems like you could read them like a horoscope, and everything you read could apply to you in some way.

I guess I just want to see if any of this strikes a chord with someone, and if you think it could possibly be anything else?

I don’t feel like posting on an MS Forum, as I haven’t been diagnosed, so feel a bit fraudulent, and like I’m making a bit of a fuss (feel like this in real life as well).

Am off to see an ophthalmology consultant privately tomorrow, but at present, I don’t feel like my concerns are being heard by any medical professional. I keep being told not to worry, but I’ve only seen eye people (pardon the pun), so am conscious they’re not MS experts.

If you got this far, well done and thank you. Just writing that has felt cathartic xx

[AyoadesChinDimple]

I empathise. I started with trigeminal neuralgia last year and have had MRI which showed up lesions. I went for a lumbar puncture next and am waiting for the results but strongly suspect MS.

I have lots of symptoms that sounds like yours but as you say you could probably make anything fit with MS symptoms as they are so varied and different for everyone.

There are pre diagnosis sections of some MS websites and also a Facebook group where quite a few people are yet to be diagnosed. Everyone with MS has been through diagnosis and some have taken years even decades to get their diagnosis. So no one minds trying to help someone at the stage we are at.

I know its obvious but try not to Google. I'm a massive hypocrite because some days all I do is Google but others I try and just forget about it but under the surface it is always lurking and probably will be until the final word.

Some conditions can really mimic MS and so doctors want to rule out those before making a call on MS. It's awful to think you have a condition but can't yet officially put a name to it or start on drugs to stop it progressing but at least you are in the system and being assessed, many more are struggling to get their GP to refer them or to take them seriously full stop.

Try and keep busy and avoid Google.

[Gaia1984]

Hello, I have MS, was diagnosed a few years back. You might have it- and if you do it can be a frustrating experience getting diagnosed- But there are so many other things it could be, so try not to freak

If you do end up with a diagnosis, there are amazing new therapies that make the disease a less frightening experience. I had a therapy called Lemtrada and have been totally fine for 4 years- I don't even feel like I have it anymore and feel 95% 'normal'... absolutely zero disability and I live my life as normal

One of my first relapses causes Optic Neuritis, it was horrid but once the relapse finished my eye went back to normal. It's very easy like you say to relate all previous niggles to the list of MS symptoms... a key thing for me that helped me get diagnosed was realising that my symptoms only really appeared when I got warm- I'd start to tingle and feel a bit pissed. Doesn't happen for everyone though

Good luck, hopefully you'll get good news! :)

[dysongirl]

Hey hun hope you feel better for getting that off your chest 😉
When I was diagnosed 15yrs ago I was in shock utter shock.
Like you it started in my eyes.
And just to let you know that is probably the best outcome.
Xxxx

[LittleScottish]

That's all really reassuring, and I'm really grateful that you took the time to comment - thank you!

Feeling calmer this weekend, although none the wiser 😢 xx

[missmeg3leg]

Hi LittleScottish, hope you don’t mind me gatecrashing your thread but I’m too in the same position as you!.....out of the blue 2 mths ago I woke up with an extremely painful & swollen eye, didn’t think too much of it but mentioned it to an ophthalmic surgeon where I work....then found myself in “the system” previously fit & well, no medications etc etc couldn’t remember last time I saw my GP!

Eye tests & bloods revealed I had optic nerve compression so was started on high dose steroids 🤢which thankfully I’m 1 wk off finishing weaning & eye problem has resolved.....blood test also revealved I have high thyroid antibodies so have been referred to endocrinology

Had MRI & contrast last week & appt yesterday to discuss results...eyes all normal....but....2 small areas highly suspicious of demyelination & now referral to neuro! Am totally shocked as I’ve no symptoms what so ever apart from the now resolved eye-issue...

Here for a hand-hold if you need it!

[florenceandthemac]

Hi, I know this is an old post, but did you have an outcome/diagnosis @LittleScottish @missmeg3leg ?