A little Confused

Hi everyone not sure I have put this in the right place. About 10 years ago now I had all the test under the sun to see if I had Lupas or MS after I lost the use of the left side of my body. I wont go into all the symptoms as it’s extensive but one this that remained was I lost my side vision out of my left eye and have had reoccuring Optic Nertitius ever since. About a month ago I completely lost the vision in my left eye and was sent to see a registra. There was some mix up with dates etc and When I received another appointment recently phoned to cancel it as I thought it was an incorrectly made appointment. I was told that actually it had been made following blood results and my orginal consultation from my registra and it is actually to see a consultant who specialises in MS. It was a bit of a shock as hadn’t exspected this. My MRI is on 20th Sept but I am wondering if anyone was referred to a consultant who specialise in this area without it being MS. I know Optic Nertitius does develope into this and in truth I have all of the symptoms including some of the more rearer ones, and they have graduly been getting worse over the last month. I’m not sure they would send me to a specialist if they did not think there was cause to but just wondered if anyone else had exsperiance of this?

Thank You

hi lottielu

it is almost certainly because they suspect ms.

the specialist can authorise a DMD so it will be quicker for you to get your diagnosis and move on.

i heard lots of stuff about lupus when i was going through the diagnosis process.

wow that registrar certainly got things moving.

hope you manage to deal with the shock.

you are definitely in the right place here and lots of good people will help you, you just have to give us a shout.

carole x

What tests did you have done 10 years ago? Did anything show at all in any of them? Bit of a shock I imagine, hearing that you are due to see an MS specialist: I agree that it would suggest that they suspect MS and things seem to be moving quickly in terms of appointments. Good luck.

Thank you that’s so kind. I have terrible back pain at the moment which seamed to come from now where and leg spasms which are rather embarrassing. I have three members of my family who are already diagnosed and have different types. I’m not sure if my back pain is related bute Dr just said take painkillers you haven’t got MS yet as not been diagnosed.

I had MRI Scan, Lumber Puncher, Electric therapy and another one which I can’t remember they put needles in your hands to measure your nervous system. They came to the conclusion that it was a virus that had effected the nerve at the back of my eye which had caused all my issues (to be honest I think they were very unsure, they spoke in long words and I didn’t really ever think we got to the bottom of it, MS was mentioned at the time but it wasn’t perused for whatever reasons). I lived with the symptoms muscle spams, join pain, etc etc for years putting it down to this, until my first visit to an eye specialist when they told me this was not caused by a virus as it would have just been a one off and got better, it wouldn’t reoccur or get worse. One a good day I can see a small square area in my left eye on a bad day it struggles to open. Over the last few weeks I have struggled to grib cups, back shopping and even had my legs go into spam and been unable to stand for a few minutes. I still exercise regularly and try to go on just encase it’s something else.

It sounds like you’ve been getting the run-around but with a MRI on the 20th September it sounds as if the doctors have gone back to square one.

Hopefully, when they have done all the tests they can give you a treatment that sorts out your symptoms.

You’re very welcome to come back here if you have any questions or want some more information.

Best wishes,