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not yet diagnosed... unsure?

Hi

Thought I’d come here for a bit of advice

I am 49 female and for the last few days have been experiencing numbness in my face - like when a dentist does a filling. My tongue and gums are also numb

I have had numbness in the hands for years, possibly due to a compressed nerve in my neck (diagnosed as tennis elbow, then spondylosis via mri, my feet also tingle with strange feelings in my knees

I don’t have any pain anywhere apart from occasional lower lumbar and mid back pain.

I don’t have any double vision, slurred speech.

I walk a lot and keep relatively fit

I’ve done some research hence being here. I know that it generally affects younger people, but can arise in my age group.

I’ve read that if the problem is MS that it could take months/ years to get a proper diagnosis and that there isn’t much treatment available.

Early next year I will be 50 and I am planning a massive long-awaited holiday to America and Canada, however, I am fully aware that if I go to the Drs and they refer me to a neurologist I then can’t get travel insurance due to having an ‘undiagnosed condition’

I’ve looked at the medicines available and they seem to prevent flare-ups by 30-50% but most of the treatment is physio, exercise, cognitive therapy etc (self managed)

I don’t know if I have MS, but if I go to the DRs and get a referral - then my 50th birthday gift won’t happen

Any advice - have I read the treatments wrong - is there a point going to the Drs at this point - how long do referrals take

Thanks for your help

Hello

What a conundrum. You could find that what you’re worrying about is a vitamin deficiency (B12 often looks a bit like MS, tingling in extremities etc). Or you could have trigeminal neuralgia (https://www.nhs.uk/conditions/trigeminal-neuralgia/ ) which could be caused by a number of things, one of them MS.

I completely understand the choosing to wait until after your birthday trip. After all, if you can bear the symptoms that you’ve got/had up to now, then why risk ruining your holiday? But then if you see your GP and s/he doesn’t think it’s a neurological problem, then you might end up worrying for nothing.

Referral to a neurologist can take absolutely ages and gain you very little in the short term, although if your facial symptoms or others continue, then it’s probably a good idea in the medium to long term.

MS can in fact be diagnosed at any age. It’s most common from the age of about 30 to 40, but it’s possible for teenagers and the over 70s to be diagnosed, so your age isn’t necessarily relevant to the diagnosis or otherwise.

I suspect in your situation, I’d try to ignore the little niggling worry and go on the holiday. Then if you continue to have symptoms, see your GP and ask for a referral to a neurologist.

In the meantime, you’ve said you’re fit and walk a lot. Keep that up, in fact if you can slowly build your exercise up, it wouldn’t be a bad thing. Being as fit as possible is definitely a good thing as far as possible neurological problems goes.

Start a health diary. Think back as far as you can and try to put rough dates on symptoms and odd feelings. That will help regardless of what happens next. And it will make you feel better about putting off looking further into your symptoms, you’ll be actively doing something that will help.

You’re right that most treatment is disease modifying drugs - aiming to prevent relapses among the people with relapsing remitting MS. 85% (ish) of people diagnosed with MS have RRMS. And they are effective at reducing relapses by between 30 and 70%. But that means for some people that they start a DMD that suits them and they have no relapses for years, if ever. So while it seems that drugs aren’t all that effective, that’s not really true. It’s true for some of us, but not all.

Some treatment is of course self managed, for example fatigue, a common symptom, is best self managed. By not overdoing things, but cutting tasks down to smaller chunks and resting effectively. And physiotherapy plays an important part (which is why I’ve suggested you stays fit as possible). Many people with MS take a vitamin D and/or B12 supplement. But generally it’s best to get your vitamin levels checked first.

So when you do see your GP, ask for blood tests to check your vitamin levels.

Ultimately it’s your decision whether to defer your investigation into these symptoms.

Whatever you choose to do (and I kind of think I know which way you’re swaying), have a great 50th birthday. Hopefully with a fabulous trip to the US and Canada.

Sue

Thanks. I went to the drs today and had a full blood test done so if they come back fine I think I will just carry on as normal and have a fabulous holiday.

I mentioned the tingling but the dr seemed to think it was anxiety related, not enough oxygen going in around the mouth… (hmmm)