Hello,
Completely new here and to MS.
After incidental finding of some ‘patches’ on my brain following an MRI scan after hearing loss, my neurologist has diagnosed me with RIS (Radiologically isolated syndrome), this was following a 2nd MRI with contrast. The scan showed patches that were very consistent to MS and some that were potentially due to migraine for the 30 years.
I have no clinical symptoms and lesions are ‘not active’ and there aren’t any only spine, which she was reassured by.
I was offered a lumber puncture or a scan in 6 months to see if there are any changes, as she has nothing to compare my brain with.
I have some pain in my knees and achy legs just lately… I believe I’ve had this and off for years, often after I’ve sat crossed legs for a while ( I meditate and do yoga so sit like this sometimes) or after I’ve run.
I am now thing every little twinge is likely to be MS. Neurologist has told me I have a one in three chance of developing MS (or two in three of not!)
Anyone here has a similar journey? I am quite an anxious person, however chances are, if no one had seen my brain, I’d have put aching legs down to a number of things, not MS.
I am wondering whether to call neurologist to tell her my knees are painful, but feel a bit silly ?!
Thanks for reading 
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Hello, firstly I am sorry you have experienced hearing loss. I do think a LP would help you with a diagnosis so you can then think about drug options.
I had a LP 14 months after my CIS, was diagnosed with RRMS and am now in pre screening before I start my drugs.
I am doing the same with anything that happens now, my left hand started to hurt three weeks ago and have had dull headaches for a month as well as Vertigo that kicks in occasionally. I did go to the doctor about this and am having some bloods done so they can rule out anything else.
Just FYI - my left knee hurt before my CIS for 3 months and couldn’t put any pressure on it. It was my left leg that went completely numb during my CIS and couldn’t move it at all.
I do not think you should worry about sounding silly at all. I think you have to raise every thing you are feeling so you can get the treatment and support you need.
All the best, Manisha
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Hi,
I started with RIS and unfortunately I was the one in three that did convert. In my case I also had a spinal cord lesion, but they didn’t confirm RIS until after my lumbar puncture result came through.
You are right, the RIS diagnosis leaves you in a position where every twinge feels like it could be MS. My solution to this was my GP. The whole point of GPs is that their wide-ranging knowledge should mean they can identify the most likely cause of any symptom, being aware of your RIS but also everything else that you can get - whether or not you have MS… Having said all that I’m not sure pain in knees/legs of the kind you describe sounds like MS, really, but I’m not a doctor.
Can you get medication for your RIS? If you are anxious, you might contact the neurologist to ask if medication could reduce your risk of converting to MS.
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Hello,
Thank you kindly for reaching out, it’s really appreciated.
I am sorry to read your RIS converted,
I do hope you’re managing okay 
I agree with you, re: GPs, perhaps
I will try them first to see if they’ll even see me…
My neurologist is very approachable and understands my anxiety that I think stems from losing my sister very suddenly in traumatic circumstances a couple of years ago at 52
I am coming up to the age and anxiety is worsening. I am also being referred for ADHD diagnosis.
I think I will call neurologist just so she aware. I didn’t I could be medicated for RIS, she had said we need to wait for next scans to see if any changes have occurred.
Thanks again for your kind response.
Becky xx
Hello there
Thank you very kindly for your lovely response, it’s much appreciated.
From what I know (and I’m no expert) CIS is quite different to RIS - I’ve not had any clinical symptoms/episodes and nothing was of concern when I had my examination with neurologist.
My knee pain is not consistent, I had it Saturday and this morning it has gone, it’s def not something that is there for weeks or months. Perhaps I am in some denial as, of course, I don’t want a diagnosis, as I’m sure you and everyone else here doesn’t.
The LP - myself and neurologist decided not necessarily the right thing yet due to my anxiety disorder and lack of symptoms. l know if it’s positive I will think every little thing is the onset and this could be more detrimental to my wellbeing at the moment.
Thank you, I will call her secretary to let her know about knee pain, so she’s fully aware.
Best wishes to you in your journey xxx
Hearing loss is an uncommon MS symptom and MS certainly isn’t the first thing they think of, but it does happen and it happened to me and sure enough MRI confirmed that an MS lesion was the culprit. Did this form part of the discussion you had, or was the hearing loss caused by something else?
Hello
Thanks so much for reaching out.
Hearing loss for me, I believe isn’t connected to my RIS. Lesions were found as an incidental finding on the MRI. My hearing loss wasn’t connected.
Sorry for your hearing loss x
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I should have added that steroids fixed it. Fastest response to them that I’ve ever experienced. I hope that your hearing returned too, whatever was causing the problem.
Thanks for this Alison
My hearing loss was gradual. I’ve had lots of issues with my ears; allergies that caused eczema and itchy ears! I was referred to ENT who ordered the MRI initially… I have hearing aids now which help so so much! X
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