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I don't know what to think

I’m not really sure what the purpose of this post is, I think I am looking for some advice about what might come next in terms of treatment options (or not).

I was diagnosed with optic neuritis about 6 weeks ago after a fortnight of constant headaches. It was quite severe and I essentially lost all vision in one eye. That was (eventually) successfully treated with IV steroids and I then had an appointment with a neurologist and an MRI.

I have now heard from the neuro (in a letter to my GP) that there are "several white matter lesions very suggestive of demyelination as seen in MS’ and he has asked me to come in for a review. I don’t know how to feel about things, MS was never on my radar. I’ve suffer from migraines and have been to the GP in the past about fatigue and bowel issues but it was dismissed - I’m a bit overweight which seemed to mean nothing I said was ever taken seriously by my previous GP (my current one is not like this).

Part of me thinks I’m totally fine and another part is worried. Part of me is thinking previous things could have been a symptoms, and part of me is saying don’t read anything into that, it could just be that you have IBS and are easily tired and unmotivated. I also don’t want to tell anyone about it (outside my immediate family) since I feel like a fraud.

What happens now, what does getting a ‘diagnosis’ actually mean? DMDs were mentioned at the first consultation as a potential option but I would need to see an MS specialist which my current neuro is not.

Ok, waffle over! Thoughts welcome!

Hi!

Firstly, never feel that you are a fraud! You are not! Your symptoms are real and frightening, so that’s definitely not being a fraud.

Like you, I was told by my neurologist that my MRI suggested MS, but to make a proper diagnosis you would have to follow this up with a lumbar puncture to check the spinal fluids. If you’re not confident that your current neuro is qualified in this field, then by all means go back to your GP and insist on a referral to someone else.

Your MRI results may not mean that you have MS, so please try not to worry. The state of being in limbo is one that is familiar to many of us, and I know it’s not a comfortable place to be. Out of interest, have you been tested for Coeliac Disease? That can make you extremely tired too and give you bowel problems.

Whatever happens, please try and stay as positive as you can (and I know it ain’t easy). If it does turn out to be MS, life doesn’t stop as I’m learning myself.

Feel free to come on here at any time - there are lots of very experienced people on this forum who will be glad to help.

Thanks for your reply, it’s really helpful and much appreciated. I thankfully don’t have Coeliac Disease, changes to diet haven’t made any difference either. My neurologist was the one who suggested I see the MS specialist so I hope there is no issue getting that arranged. I’m really nervous of a lumbar puncture after having a very difficult time having a spinal anaesthetic about 18 months ago where they discovered I have very low spinal fluid levels (who even knew that was a thing?!) but if it needs to be done then I’m sure they will have some way to sort it. I am generally feeling ok about things, as you say it’s just a bit like being in limbo which I’m finding very distracting - it is reassuring to know that these feelings are not uncommon at this point. Thank you again for getting back to me - it is great to know this forum is here.

Hello

As Flopsy said, you aren’t a fraud. Never think that.

Optic Neuritis is very frequently a first outward symptom of MS. It’s the one that people can’t ignore so they see a doctor about it whilst other symptoms are easier to either ignore or blame on other factors or potential illnesses.

The standard for judging whether someone has MS is generally the ‘McDonald Criteria’. Have a look at https://www.mstrust.org.uk/a-z/mcdonald-criteria As you can see, the presence of demyelinating lesions in the brain and/or spinal column is the main diagnostic factor. To be certain, neurologists often do a lumbar puncture (oddly because it’s not conclusive evidence, just suggestive) and/or a Visual Evoked Potentials test.

The MS specialist neurologist to whom I presume you’ve been referred, may use just the MRI test that you’ve had plus take an oral history from you and conduct a physical examination to make a diagnosis (or just possibly not).

On the assumption that you are diagnosed with MS, at that point you should be referred to an MS nurse - who is likely to be very helpful to you in getting to grips with the disease - and had a discussion about disease modifying drugs (DMDs).

DMDs are designed to reduce the number and severity of relapses. They aren’t a cure, nor will they improve any existing symptoms you have. But they are pretty much essential for someone diagnosed with the relapsing remitting variety of MS. I’m making an assumption that a) you will be diagnosed, and b) it will be relapsing remitting because you had an episode (Optic Neuritis), aka relapse that was treated with steroids, and subsequently recovered from it, aka it remitted. Avoiding relapses is what you aim for with RRMS. Relapses can be mild or not so mild, they can cause lasting damage, but they can be avoided. Having the discussion about them as soon as possible after diagnosis is only sensible.

You could also be referred to a bowel and bladder nurse / specialist. There are ways of managing problems with bowels and s/he would be the best person to advise you.

Referral to a physiotherapist is also possible, if it’s not offered, ask for it. You should be guided as to what exercise plan might help with both any symptoms you have now, and as a basis for future recovery from any relapses.

You may even find that a diagnosis of MS is beneficial for you. If you’ve suffered from fatigue, bowel problems and maybe other symptoms leading from undiagnosed MS, you should now be able to access help for all these.

Please don’t let my post frighten you, or worry about your future. A good outcome is likely from your future appointments.

And we are always here to support and offer such advise as we’ve gathered over our years of living with MS. I know it’s not a place you ever expected to come to, but welcome to the forum.

Sue

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Thank you Sue, this is incredibly helpful, your post has certainly not frightened my - I feel better being informed of what might be next (to the extent you can ever know what comes next if it is MS!)

I’ve found the website and the forum to be a great source of information and support already - I am so glad it’s here. :slight_smile:

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