hello, new here, it’s 3.30am and wide awake so seems like a good time to post…
I’m undiagnosed, optic neuritis last year, many other varied symptoms over the past few years but I’m unable to have an MRI because of a metal implant in my back. Prior to the ON kept getting fobbed off but then this year was referred for lumbar puncture and that has come back with unmatched oligoclonal bands in the CSF, which I understand is a probable indication of MS.
I have appt with consultant on Thursday. But I’m interested to know if anyone has been diagnosed without MRI?
I also currently have completely numb right hand and arm which is driving me to distraction along with intermittent pins & needles in my feet
Hi Meerkat,
You’ve found the right site if you do have MS.
Haven’t heard of anyone being diagnosed without an MRI but lumber puncture results may be an indicator. I had both.
My top tip for people who have symptoms before diagnosis or after is to write a diary of symptoms. When they start, what they are and when they end. Also appointments and their outcome.
Any aids you have to buy to help you.
My diary goes back to 1989. Diagnosed 1998.
If you do have MS ask if there is an MS nurse in your area. A good person to contact with any concerns or worries.
Lots of great articles on this site.
Let us know how you get on.
Jen
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Hello
Welcome to the forum. I’m not familiar with any diagnosis without MRI, but there must be other people who can’t have MRIs yet are diagnosed with all sorts of diseases normally using MRI as a diagnostic tool.
It’s good that you have an appointment with a neurologist next week. A neurological examination, plus your history, plus LP should be enough to diagnose MS or rule it out.
Jens suggestion of a symptom diary is a good one. I’ve been keeping an online diary since 2011. There are many different online apps (if you have the right kind of equipment to use apps). Otherwise, just sit down and try to remember everything that’s happened which could be connected with approximate dates. Take it with you to the appointment so you can discuss the various ‘episodes’ with the neuro.
Good luck.
Sue
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They used to diagnose MS before MRIs were invented! The tick-box doctors may have difficulty, but a good neurologist should be able to use their acquired experience and judgement. It may take longer though.
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I had MRI etc but what got me my diagnosis in the end was two VEP tests positive. The first one in 2007 show ON and slowing in brain to optic nerve bilaterally. Yes i had a few MRI which showed odd lesions in different place still no diagnosis. Lumbur puncture gave muddy waters as the blood test alongside showed inflammation which makes LP negative for MS.
then late 2015 with on going issues another VEP test which showed demylination in the brain to the optic nerve. there is a good you tube channel which explains VEP tests. a lot more neuros are using it again as a diagnositic tool. They used VEP test before MRI.
I found this very informative.
I had optic neuritis several times. in 2016 diagnosed with progressive MS.
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Excellent point Ziola. MS was first described in the 19th century. So if doctors could diagnose MS fairly accurately before the invention of MRI, they should still be able to do it!
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Thank you all, that’s a really good point that MS was around long before MRI machines!
I’ll see what consultant says on Thursday 
I was interested in Ziolas point about historical diagnoses of MS and found this: History of MS | MS Trust
I hope it’s of interest to you. One thing that struck me was that before MRI, they used CT scans. They still could? Not to mention VEP that CC mentioned. (I had VEP as one of the first tests for MS! It’s a bizarre experience and one that was never explained to me.)
Sue
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CT scans are not very helpful in picking up lesions - possibly if the MS is quite advanced, with loads of lesions, it might be clear enough.
And thanks Crazy Chick for the info about VEP. That looks very useful for Meerkat, as well as others of us.
I vaguely remember having that done, but can’t remember where or by whom! I think it was probably by the opthalmologist when I was in my 30s. I don’t think it was at my first neurology visit in my 20s.
If it was in my 30s then a lumbar puncture was suggested following this. Also I had to go back to be shown some eye muscle strengthening exercises. It was on a very snowy day and the person who should have shown me hadn’t been able to get in to the hospital. So they roped someone in - I presume a nurse or receptionist, but had to explain to them the exercises. They didn’t realise I could hear them. But in my earshot said that ‘with what I’d got’, the exercises were unlikely to help. I never was told what I’d ‘got’. The exercises did actually work. I’m thinking that the results of this is actually the type of evidence my new neurologist is hoping my GP can recover from my old notes …
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So I had my appt today - and got the diagnosis. No MRI required, enough other evidence with optic neuritis, lumbar puncture plus other various symptoms.
Just so relieved for the diagnosis. Now the next part of the journey begins…
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I’m very glad you have the diagnosis (& are happy with it).
Often it’s being told ‘yes , it is MS’ is a good thing. It means you can get the proper help you need from now on.
Hopefully you’ll now be able to start a disease modifying drug (DMD) which prevents relapses and thus prevents further disability. This is a point in time that you’ll look back and feel that with the answers to your ailment is often a cause for celebration!!
Sue
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Not sure i should say congratulations really. But at least you know MC and can move on. the ON and vep can be the life saver of diagnosis.
lesions heal and hide as i was told by my neuro. x
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Hi Meerkat, the good thing about getting the diagnosis (not one that any of us really want) is that is opens the door for treatments and resources. So welcome to the site as there are some great people on here that can offer help, support and friendship. M xx
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