I’m an otherwise fit and healthy 37 year old female.
I had headaches, eye pain, and loss of vision in one eye. After going to an eye hospital in September, I was referred for an MRI. 6 weeks later, optic neuritis was confirmed and I was told I had some brain lesions. I’ve neen referred to neurology and await my first appointment (Jan).
I just wanted to know what I should expect? Is there a best practice way of dealing with it? I’m aware of the Mcdonald guidance and would be in the first relapse, multiple lesions category. Anyone been in that position and know what should be happening next?
The MRI findings said:
OPINION:
The posterior half of the right intraorbital optic nerve is abnormal, presumably the side of the clinical optic neuritis. Brain imaging shows white matter signal changes raising the possibility of inflammatory demyelination.
Separate to the optic neuritis, I do
suffer from fatigue and brain fog. Generally fine otherwise, no mobility issues.
I was diagnosed some 17 years ago after an episode of optic neuritis. I have the general impression that the nature of the first appointment with a neurologist depends very much on the nature of the neurologist! I think they are all a bit overloaded but some have much better ‘bedside manners’ than others so don’t be surprised of worried if you get one who knows his/ her stuff but isn’t great on the emotional intelligence (my first appointment started with ‘ um , so why am I seeing you?’ Over the years I’ve got used to his ways and he is actually fine).
Once he had worked out why I was there he basically asked me questions about symptoms and experiences including anything from the previous 6-12 months. He was quick to diagnose MS and starting treatment . From what I can recall that was pretty much it.
My only advice is to make a list of any unexpected / unexplained symptoms you have experienced over the last year or more. And if he/ she does say it’s MS then have a list of questions you want to ask including about treatments. I’m guessing that he /she might say that they will arrange an appointment with an MS Nurse to discuss MS and treatments etc.
I think my overall experience was of feeling rather overwhelmed by the diagnosis and of being a little swept along by the process from diagnosis, to MS Nurse, to starting treatment
I had my appointment today and the Doctor is confident that I don’t have MS. He said the lesions are very small and not typical of MS, but I’ll be referred for an MRI with contrast - brain and spine. He said that a lumbar puncture wasn’t necessary.
I had a list of my symptoms and history (including glandular fever which I thought may be relevant due to EBV). He was dismissive of my symptoms, but I’m taking that as a positive.
Feeling very confident that it’s not MS and maybe I need to sort my lifestyle out instead. My late nights and early mornings can’t be helping the brain fog, along with a poor diet I’ve had this year.
He did say that lesions can be nothing - this is something that I struggled to find mention of when looking up lesions beforehand.
Just sharing in case it’s useful for people in a similar position.
Mighty glad to hear your news. At the risk of sounding a little ‘nannying’ yes, good diet is always a good idea and just as a precaution- take Vitamin D supplements ( the evidence isn’t definitive but it does appear that low levels of Vitamin D might increase the risk of developing MS).
The forums were helpful for me going through the process of suspecting MS, so I wanted to provide an update on my journey in case it’s helpful to others.
I saw a consultant privately who was very confident I didn’t have MS based on the NHS MRI showing very tiny lesions atypical of MS, and my reflexes and such being absolutely fine. He referred me for an MRI with contrast to definitively rule it out.
I wasn’t expecting this outcome at all, but today I got the results of the MRI which showed inflammation in both the brain (T2 signal change within the white matter) and spine (T2 signal changes within the cord), with a conclusion of likely MS.
I have a neurology appointment with the NHS tomorrow. I don’t know what to expect from it, but hope these findings bring me closer to an official diagnosis. There’s a part of me that’s still hopeful that it’s not MS, but I think that’s unlikely based on the most recent MRI.
The NHS confirmed diagnosis today and took some blood tests. I’ve been referred to the MS Team and they’ll sort out treatment. I’ve been diagnosed with RRMS.
I certainly didn’t expect any of this but I’ve been very fortunate that it’s been 4 months from optic neuritis to diagnosis.
Hello username, sorry to hear about your struggles. It is as you say at least nice to not have to wait years and finally get a proper diagnosis for some degree of closure, so that’s good.
Did you start any medicine? That tends to be the first big choice we all have to make after finally landing the grand diagnosis nightmare airship in MS land.
Did you have any issues since your initial stuff? They might set you up with stronger medicine initially if that is the case I can imagine. I live in Japan so very limited expertise with UK systems, but it seems the area you live in and otherwise indeed the severeness and your neurologist’s preferences can severely affect what medicine you’d start out with. They do say some people have little to no problems for years even without medicine, while then those like me would be unable to walk or talk within the first year if it hadn’t been a straight trip down medicine alley.
Indeed as mentioned above, vitamin D is apparently important to at least not be lacking, and I believe I saw it mentioned that some research shows it might indeed help slow down the illness a bit. I can also recommend making sure you get enough of the fatty acids in like fish oil and walnuts and such. At the onset of the illness and while we are young and energetic, the body can heal quite a lot of the damage to the sheath over the nerves with it’s own stem cells and well sufficient healthy fats to make an impact on the brain it seems. It seems. It’s not a cure, but it seems it can help. Anecdotally at least my doctor was quite surprised to see how much my various white areas had healed a while after I started taking vitamin d and fish oil supplements. Generally healthy anyway so no harm in trying.
Just for some context, I am nearing the end of my 2nd year of MS, just over 1 year on Gilenya after a bit more than half a year on Tecfidera. I am male and 37 like you, and do some amount of jogging so not terribly unfit, hoovering just around 25 bmi. I got glandular fever from my first girlfriend at 17, and they say that illness is a one-way trip to MS hell as well. I was diagnosed in just under 2 weeks after getting essentially an epileptic attack and walking around like a zombie until my poor terrified wife managed to get me into an ambulance and to the hospital. A CT scan showed nothing, lots and lots of MRIs everywhere showed white stuff, spine fluid check was also done, and well my very young very try-hard doctor at the time tentatively concluded it’s probably MS and my later super veteran doctor went with that as well, so I avoided a long diagnosis as well. Was rather fast really. But enough about me, I’m sorry for blabbering.
Are you doing alright? It’s really important to be able to talk openly about this illness and get good honest support from those around you. I couldn’t talk to anyone at first and I got super depressed. There might be people around you who want to help but aren’t sure how, so just some good frank pouring it out is likely a good way to also settle yourself a little bit. Everything might seem a little less scary if we bring it out in the open. Make sure to take good care of yourself.
This illness is overall total rubbish. But it’s not the end. Take your time and find yourself in this new world. Make sure to treat yourself nicely. Every little bit of energy and mental surplus will be helpful on the long term as well. There will be days where it just all sucks. Drown them in happy specks of light. Even if it’s just a little piece of chocolate with your morning coffee or something. Your friend rubbing your tired shoulder or dampening the light a little if your eye hurts. Everything really adds up. And as you see with TeddyBear and nice people like him, you’re not alone. Never sink into a hole alone, even just a finger held out might get caught. Or I guess in the case of my toddler, bitten. Hard. Well, he means well, as does everyone around you.
So just don’t close any doors. You’ll be okay.
he basically asked me questions about symptoms and experiences including anything from the previous 6-12 months. He was quick to diagnose MS and starting treatment . From what I can recall that was pretty much it.