Hi after years of symptoms and after recent vision loss I ended up in hospital , I’m going to make this brief but I ended up having a mri, lumbar and loads of crazy blood taken , it’s talken months but now al the findings are in , they have found I have positive bars in my lumbar results , lesions on my mri and also positive mog anti body in my blood , I’m still waiting for my neurologist to get in touch , can anyone help here , my dr says he’s 99% sure he’s looking at a ms diagnosis , please can someone advise me, I’m at my white end , thank you x
We’re not doctors but that sounds pretty conclusive. If your consultant has the results, they should have enough to make a formal diagnosis. If positive, remember you have to notify DVLA & car insurer if still driving.
Unfortunately we have to be our own advocates when it comes to dealing with the medical profession… Neuro’s are notoriously bad (with a few good exceptions), at following up unless prompted. Get in contact with their Secretary by phone if you can, or write to the Neuro direct if you aren’t able to reach the Secretary or him and ask for an appointment (if that is what you want) or clarification in writing or phone call (writing would be better because then you’ve got something tangible to refer to) of your diagnosis.
You can’t wait for the Neuro to contact you and assume they will give you all the info you need. You have to be proactive and chase it.
Well, at least you can see the way the wind is blowing and won’t be taken by surprise if an MS dx comes your way in due course. I am sorry that you are having a frustrating wait. There is lots of good info on the main part of this MS society site, and you can do some useful homework if you can face it.
Welcome to the forum.
Basically, I’d agree with everyone else; ie that you could be facing an MS diagnosis. But, then there’s the positive MOG antibody test.
To my (fairly ignorant) knowledge, MOG antibody disease and MS share an awful lot of symptoms. Especially optic neuritis. But they are different.
So while MS may be possible, it’s not definite. In my opinion.
Hoping for a speedy diagnosis and a good result for you.
(Fyo, my info comes from here: https://www.ouh.nhs.uk/patient-guide/leaflets/files/45339Pmog.pdf and here: Neurological update: MOG antibody disease )
The consultant has been sent the results but I haven’t been assigned one or heard anything just that my referral to neurologist is pending and marked as urgent , but could be 6 months !!I haven’t been advised anythin as to what to expect or do , I’m so scared of losing my licence has this happened to anyone, must say I have perfect eye sights now?
No need to notify anyone until you’ve seen the MS Doc. His/her report will include an opinion about vision.
You only need to tell the DVLA if you have a formal diagnosis or if your eyesight is significantly impaired. Have a look at Medical conditions, disabilities and driving - GOV.UK
You don’t need to notify your insurance company at all. Although you can if you feel happier! Basically all your insurers are concerned about is whether you have a valid license.
Actually, if your eyesight has completely resolved after optic neuritis, that’s an excellent thing regardless of your eventual diagnosis. Remission is fabulous.
In terms of your diagnosis, look at what Willowtree said; get hold of your neurologists secretary and ask how long you’ll be waiting for an appointment.
Meanwhile, don’t panic about your eyes, driving or anything else. While you have good eyesight and no diagnosis, you are fine to drive. Once you get a diagnosis (assuming you get a finite answer) is soon enough to start worrying about your license.
You need to take IV steroids once you feel a “relapse” like another vision loss or problems with movements or bladder issues, …etc.