Fuck. MRI results and possible MS.

[ShinySloth]

I had a thread a couple of months ago about some neurological symptoms I've been having. I was really worried it was MS. I got a referral to a neurologist who said she would be surprised if it was but she'd refer me for an MRI to check what was going on.

That was last Saturday. I've just returned from a weekend away to a letter summoning me to an outpatient neurology appointment in Jan. The thing is this isn't what I was told would happen if the MRI was clear. The consultant said she'd write to me in that case, and also sent a letter confirming that if the scan was all good I would be discharged back to my gp.

So now I am freaking out. The letter has no further info. How can I wait until Jan with this hanging over me?!

You can't and that's really unfair. A friend of mine was recently diagnosed with MS and I'm sure it didn't take so long, but she is in Canada not UK. I hope this means that they are just not sure rather than anything else. Can you phone them on Monday and ask for clarification?

Hi, I remember your thread and posted on it. From what I can recall about timescales when I was in your situation, it was about the same. Yes you could ring for clarification but it's only the neurologist who can interpret the results. Even if the scan shows any lesions, they won't diagnose without 3 separate presentations of symptoms (that's what I was told anyway) and I had had 3 separate episodes. Has anyone mentioned a lumbar puncture to you? I would like to reiterate that even if it is MS it honestly doesn't have to be the end of the world. Sending you

I wouldn't read too much into the timing, or, existence of a follow-up appointment at this stage.

The NHS is wonderful, but it does have many foibles, one of which is its unmanageable admin. This appointment may have been created by default (in the department where I work, if I tick 'MRI' on the clinic outcomes form, a follow-up gets automatically generated. It may also be that they've found something else on the scan that isn't MS and they need to see you again to work out if the unexpected finding is relevant.

I had something similar and rang the consultant who told me the results on the phone but I was negative for MS. I know a couple of people with it and diagnosis is slow, apparently, but I agree it's not fair to leave you worrying for all that time.

I had months and months of waiting and a various mixture tests etc. Eventually it was found to be coming off damage to my spine, they operated and my symptoms went almost instantly . Fingers crossed for you .

Thanks for the replies. I feel a bit more calm this morning. I just hadn't expected a letter with no information whatsoever and just an appointment date - it feels so sinister! The neurologist was so confident that she wouldn't see me again to discuss the scan that she said because I was clearly anxious I could come back in 4-6 months to see how my symptoms were. So I have another appointment that was previously made for Feb.

All of this is making me think it has to be bad news.

Bluesheep8, I appreciate what you are saying about diagnostic criteria and that even if they have found lesions they likely won't diagnose me. I know I probably seem overdramatic and hysterical to you, I suppose I'm just panicking about all the unknowns! Nobody has mentioned anything about further tests - all I have is this form appointment letter.

My follow up Neuro appt was for a lumbar puncture, symptoms were weakening legs,lack of balance and falling over. And I'd not been near a pub{grin]
I think that that will be your next test. Good luck.

Thank you AviatorShades. How are you getting on these days?

I would give them a call op to put your mind at rest. January is a long time away for you to be worrying about this

You might not have a lumbar puncture. I didn't. You have to fulfil certain criteria for a diagnosis of ms. Lesions, that are disseminated in time and space - so more than one location, occurring at different times. At least two episodes of neurological symptoms. Neurological impairments- have you had a neurological examination? Doing things like walking heel to toe, touching fingertips to nose? You can have lesions, and one episode of symptoms, and not have MS.

Please don't panic. MS is not a death sentence. Nor is it even necessarily a life sentence. The drugs for MS are really good now, they can as good as halt the progress of the disease, and many people with MS live near-normal lives.

My own diagnosis of MS has, in many ways, been one of the best things that ever happened to me. Although a very traumatic experience it's been a much needed wake-up call that's stopped me sleepwalking through life and made me seize the moment I now get so much more from life, because I make an effort to do as much as I can while I can.

If you want to chat 'off-line', please feel free to PM me. Shift.ms is also a great website with a really helpful community.

I promise you, MS is not the end of the world.

Thank you so much WraithBabe for such an eloquent and encouraging post. I really appreciate it and will take you up on the offer to PM you if ok.

Hi again op, you don't seem dramatic at all and I'm very sorry if my post gave that impression. Looking back, the time prior to and around my own diagnosis is a bit of a blur (it was 20 years ago now though) but I do remember feeling very alone. In a funny way, I wish I could have talked to me the way I am now, 20 years down the line iyswim. You are in limbo at the moment and it's not a nice place to be so I totally understand how you're feeling

They will diagnose without 3 episodes. My lesions were picked up on an MRI I had done as a healthy volunteer and it was diagnosed from that. I'd only had very minimal symptoms so it was a huge shock. It's not the end of the world OP. The treatment is fantastic. I still work full time as a nurse. It has minimal impact as the treatment has kept it stable.

They will diagnose without 3 episodes. Yeah, actually having said what I did, I was diagnosed the same slightly atypical way as toddler - having an MRI for unrelated reasons that showed lesions though I didn't think I had any symptoms. At the time my neurological exam was normal so they didn't diagnose ms, when I later started having more obvious symptoms, I was able to identify that I'd been having very subtle relapses for some time. I've got a strong family history so they didn't want to fanny about making a diagnosis, they just wanted to get me on drugs asap. It differs from place to place in terms of how strict they are about following the rules for diagnosis (the mcdonald criteria, which you might find mentioned in letters written about you).

I'd recommend being as brutally honest as you can about anything in your medical history that could have been down to MS that you didn't realise at the time. I brushed a lot of stuff under the carpet because I was so shit scared of having MS. If I'd been a bit more honest with myself I could have been diagnosed a bit sooner and avoided some permanent neurological damage by getting on drugs sooner.

I have RRMS, and yes I would agree, whilst I would prefer not to be given this DX, life is what you make it, of course I have had to make lots of adjustments, but it’s not the end of the world, it really isn’t. A positive frame of mind does help.

In the meantime can you speak to the Neurologist’s Secretary for advice? Was a copy of the MRI scan report enclosed with your letter at all. Would you be able to see Neurologist earlier privately, it may be worth paying for a consultation.

My RRMS DX was confirmed after two separate relapses, I didn’t have LP. Lesions were found on my brain and two areas of inflammation in my spinal cord. The sooner you can access disease modifying therapy the better IMHO, I have tried two different DMD’s. I am currently taking Tecfidera and fingers crossed it seems to be halting disease progression.

Good luck OP, sending you a hug, try not to panic you will be ok. You are welcome to message me anytime.

I had an episode of MS type symptoms about 6 years ago and my MRI scan showed a lesion. I was not diagnosed with MS. Clinically isolated syndrome I think they called it, although it is not necessarily isolated if i have further eopisodes, in which case i would end up with a diaognosis very quickly. I have had no definite symptoms since.

As I have private health insurance I was offered regular MRI scans to monitor, i think every 3 months in the first year then reducing to every 6 months then annually or something. Initially i went for scans but I found myself feeling so awful in the run up to scans and between the scan and results that i decided i preferred not to have regular scans and wait until I had further symptoms before following up. 99.9% of the time i just dont think about it so it is defintiely better for me not to have regular scans.

THe only other possible symptom i have had since is then is that i sometimes cant find the word i need or say the wrong word. It is noticabe to be as my job is all about words but no one else has commented on it and it does not happen that often so I have not gone back to the doctor. in fact i am not entirely sure if this is even a typical MS symptom.

I am not sure what my point is, I guess just that I understand the scariness of the unknown while waiting for your scan, but also that you might not get a clear answer in January but hopefully you will find a way to deal with the uncertainty.

I was called for an outpatient appointment with the consultant after a clear MRI (also looking for suspected MS). They had a bit of a chat, showed me my brain on a screen and sent me on my way - discharged but told to return with any more symptoms.

Thank you so much everyone who has posted - you are all lovely and I'm feeling more calm.

My current plan is to keep busy and give it a couple of days to see if another letter comes through with the neurologist's report. If not I'll try and call her secretary as suggested.

My mother has ms and was diagnosed very late on ? Is there a genetic test for ms ?

I was told there was no genetic link. But considering the number of people who have strong family histories of it. I find it a bit difficult to believe.

Just wondering how you are OP?