I was diagnosied with a CIA two years ago i had brain lesions not many, then a clear lumbar puncture. I was then discharged from the neurologist and told to come back if anymore problems, so I’ve been going along doing quite well really getting my health in shape etc. Then i had cloud in my right eye, went to the opticians amd found the colour vision had gone aswell, my visual field test was poor. I’ve been sent to the eye clinic, diagnosed with optic neuritis and now awaiting my mri of brain etc which has all been done pretty quick. Im just feeling so anxious about it all thinking i was well i didn’t have MS but now it’s been flagged as they think it could be but i obviously need the tests etc. Mainly feeling in a scary place and noone to talk to about it. I had a clear lumbar puncture in 2017 so how can this be MS?
Something like 80 to 95% of people with MS have oligoclonal bands in their spinal fluid. This obviously means that there are another up to 20% of people diagnosed with MS who have had clear lumbar punctures.
I don’t say this to frighten you, or to suggest that you definitely now have MS. It does however remain a possibility.
Unfortunately, you now have to wait until after the MRI before you find out if there are new demylinating lesions and then have a diagnosis of MS. Or that you have no difference on the MRI and therefore that you don’t have MS.
I’m really sorry you have this dreadful waiting period. It’s hell living in the limbo world of not knowing.
The only good thing I can say is that new treatments are being developed all the time. There are now very many more disease modifying drugs available to reduce relapses and the severity of relapses. So, just supposing you were diagnosed, the chances are you’ll be given a good drug that suits you, and relapses stay far away from you for years to come or just possibly forever.
Best of luck, I do hope the MRI and the results come quickly for you. Let us know what happens or if you have any questions we can help with.
Thank you sue for your comment, i think it’s definitely the waiting and like i said before a clear lumbar puncture two years ago. Can i ask have you ever had the optic neuritis? And did it clear up? It seems i am slowly getting my eye colour back as i have a cloud wnd colour vision loss. I will update on the mri scans aswell. Thank you again x
I have had optic neuritis, years ago. It totally cleared up in my case. My vision is fine (apart from a bit of short sightedness). Most of the time ON does completely resolve. So don’t panic about it, give it a bit of time and relax.
That’s really good to hear I’ve had it for nearly two weeks such an odd symptom isn’t it and scarey
Two weeks seems like ages when you’re suffering. The trouble is with MS type symptoms (not wanting to prejudge a diagnosis obviously) is that they can take quite a while to slowly, slowly improve. So don’t lose faith Sarah, believe that it will get better.
Thankyou sue, im think any amount of worry won’t change anything so i need to be patient. I just unsure on how much i can and can’t do like exercise incase it makes it worse.
Exercise can’t make MS/CIS worse. In fact, the stronger and fitter you are, the better you will withstand any future relapses (again, not prejudging …). So if you feel you can, and your eyes don’t make you very unbalanced (ie stay safe), then exercise is good for you.
Thank you sue, i will start off small steps again. I was unsure if it would make it worse. Thanks for the kind insight to all of this x
ok boring as i have said it before. I had ON in 2000 had no idea what it was, i went blind on holiday and when i came home it happened again ignored by my useless GP i recovered. Nothing. I was ill 2004 had to take six months of work anxiety, then odd stuff for 2 years 2006 boom all hell broke loose very hot september couldnt get out of bed and then my journey began. 2008 positive VEP test bilateral for ON, then again in 2015, in between negative LP but did present with lots of o bands but inflammation in blood = negative MS. MRI showing different lesions on spine, told non specific, ones in brain told my age.
then in 2016 got results of VEP test from october 2015 and it was again bilaterally ON slowing in brain to optic nerves but had increased. BOOM diagnsoed with PPMS.
sorry cryptic just tired this morning i slept too well lol.
so it could be anything or nothing. so dont get too wound up, ON can come with lymes and lupus i believe. hugs. xxx I have had about 4 bouts of ON and recovered my sight. without steroids. xxx
ps. my daughter says my colour is off as i was looking at colour charts for paint, and got all the wrong colours especially in the pink/red/purple spectrum wrong, i could have had any old colour on my walls and not realised lol.
Wow that was a long journey you went on till your diagnosis, I’ve have various neurological things happen then resolve. Im pleased to hear your optic neuritis recovered without the steroids aswell. I will carry on and not get too worried. Hope you feel abit less tired soon hugs xx
Hi, I have also had it, six weeks to totally recover! But fully recover I did.
Really reassuring to hear you fully recovered. Im only 2 weeks tomorrow