Possibly have MS - waiting game

[Towmcir]

I’ve been having vague symptoms for 12 months, and everything my GP has tried hasn’t shown any improvement.

Symptoms include a constant one sided headache, eye problems with same side eye, vertigo/dizziness and brain fog/extreme fatigue.

I’ve now been referred to a neurologist to investigate MS. I’m almost as scared that I don’t have it and there’s going to be no reason found for my symptoms.

Does anyone have any similarities in symptoms? How long did your diagnosis process take?

What have they tried so far?

I have similar and it's been around 14 months. I haven't seen a neurologist yet but I'm tempted to ask for a referral. We have 2 more treatment options left!

Various treatments for headaches and several treatments for sinusitis.

What about you? What are your symptoms and what has been tried?

I do get sinusitis often. I had an accident when I was about 20 that smashed my nose and even though they rebuilt it, my nasal passages still suffer continually. So I do get genuine sinus headaches (I have a horrible one now) but there is nothing that can be done about that.

I'm now trying HRT (for the fatigue/exhaustion) but finding it all a bit frustrating. Don't think I've noticed any difference but I'm not on testosterone yet so I hold out hope for that.

So 2 treatments left to try - testosterone is the one and the other is an antihistamine regime that apparently has worked on some long covid patients (which I may have but who knows!).

My main symptoms are dreadful overwhelming fatigue/exhaustion, inability to exercise, repeated viral infections.

In all honesty I think it is probably ME but given there is no treatment for that, I'm just going to keep going until there is nothing left to rule out.

I've gone from running regularly, travelling and being v fit and healthy to an absolute shell of myself. I can't even walk the dog because it's too far and it exhausts me. I have a business trip next week and the thought of going is making me want to cry but I can't afford to lose my job. I'm not even sure how I will manage if there's say a delay at the airport!

(On milder symptoms I have problems with my eyesight and tingling/unsteadiness - all blood tests are fine)

That list of symptoms is the same as my ME/CFS

@IsidoraTheFool there is a treatment to manage ME better which you should read up on if you think it’s that, pacing. There’s a few books explaining it, fighting fatigue (I have this in paperback) or pace yourself (I have this in audiobook from the library free) are good ones.

I had these symptoms:

Symptoms include a constant one sided headache, eye problems with same side eye, vertigo/dizziness and brain fog/extreme fatigue.

Plus eye sparkles, sharp stabbing tingle-pains down one side of my face and scalp - I was referred to a neurologist for investigation, it turned out to be vestibular migraines.

The brain fog/fatigue, were likely anxiety about the fact I truly believed that I was dying of a brain tumour, or about to be told I had a life-changing illness.

What eye problems are you having?

Have you googled Chiari Malformation.

I have MS and tbh while it does sound like there's something wrong with you it isn't quite screaming MS to me, so don't worry before you have to!

What eye problems have you had? An ophthalmologist or optometrist could possible rule optic neuritis in or out.

How long the diagnosis process takes can vary hugely. If you wanted to speed it up, getting an MRI asap would be the route to push for.

If it is MS, know that it's not the end of the world. If it isn't, hopefully you can get to the bottom of what's causing your symptoms.

My gut is telling me it’s not MS to be honest, but I’m just so tired of it all. I don’t have the numbness/feelings anywhere but in my head so it doesn’t feel right to me either. Hopefully a neurologist will actually look at everything again, my GP has seemingly been OK but I feel it’s time for more tests even to rule things out, rather than medication to rule things out.

Because none of the symptoms are absolutely awful on their own, it’s very much a case of being expected to keep plodding on with life which is so draining. People can’t comprehend the impact that constant low level symptoms for a year have on someone until it happens to them!

Opticians haven’t said optic neuritis, but I wouldn’t say my eye symptoms were strong enough to suspect it - my eye symptoms have never been very severe, just very long lasting now. Opticians say my sight is perfect despite my issues and don’t seem too bothered after that.

I’m just keeping my fingers crossed that an appointment comes through soon as mentally I feel I’ve reached my limit of dealing with the physical, and then if I come off like I’m not coping mentally I think a lot of my symptoms could be pushed as mental health related (even though I’ve been having them well over a year before feeling rubbish mentally).

My thoughts are with everyone going through anything at all similar because it’s horrible!

You should consider migraine (including vestibular migraine) and also consider testing for Lyme Disease (and its possible co-infections like Babesia / Bartonella).

Anxiety / panic disorder can also cause these symptoms, it may be worth considering a super low maintenance dose of sertraline with your GP if anxiety is a factor.

You could also look at Dolovent (it's available on Amazon). It is a supplement which contains 3 anti headache/migraine supplements. (Magnesium/CoQ10 & Riboflavin). Many neurologists suggest this combination for migraine and it may also be worth a try. Good luck, hope you get to the bottom of it.

I’ll look into these things, thank you. Would they all be something a neurologist would be in a position to look at, or are some more on the GP to rule out?

I’ve had multiple migraine treatment trials from the GP, but nothing has helped so far.

What’s your background to be able to make suggestions? Is it experience or medical?

I’m not daft enough to take advice from the internet blindly, but definitely appreciate pointers. Progress is slow and it’s sometimes useful to know reasoning why the GP has ruled out certain things as it feels like progress.

Lyme disease and migraine are definitely something to discuss with your neurologist.

Anxiety is something I would discuss with your GP.

My late H had MS, and the best way to get him diagnosed was a brain scan. It showed he had lesions there and that confirmed it.
It's possible to have lesions for other reasons, but almost impossible to have MS without them