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Driving myself crazy waiting for results *updated*

I have posted previously that I was given a CIS diagnosis three years ago and have recently had/am currently having a second ‘episode’ which prompted a visit to the neurologist who classified it as a relapse.

At that appointment my neurologist referred me for an MRI but has said that whether or not it conclusively shows MS (two previous scans, the last in early 2016 having been clear) I will now be eligible for treatment, either with a range of options if MS is confirmed, or with an interferon if not, since I have now had two clinically observed/documented relapses.

I had my MRI last Thursday and this Monday I rang the neurology secretary to see what the likely wait for the results would be. She told me that my report had been sent through from radiology that morning, which was apparently quick and I should receive a letter by the end of the week.

My reason for posting is a bit daft really; I just want to feel like I am actually doing something because I am a nervous wreck at the moment and can’t seem to calm myself down. I am obsessing about every possible scenario and second-guessing every insignificant detail (the scan came back quickly, that must mean it’s bad news/the scan came back quickly, that must mean it’s clear) and I am driving myself insane in the process.

My biggest fear is that the scan will show nothing, which is clearly ridiculous, but I have now had two relapses, and from my neurology examination and two subsequent field-of-vision tests it has been established that there is a problem with my left eye and that is freaking me out as much as the left-sided weakness which doesn’t seem to be improving. It’s almost as though my problems have got worse since I saw the neurologist and I began to acknowledge the possibility of MS. Could I be thinking all of these symptoms and they’re not really there??? If the scan is clear, WTH is wrong with my eye???

The gears of the NHS grind soooooo slowly. What is wrong with email people?? I am having to restrain myself from pestering the neuro secretary to read my letter to me over the phone.

Please, somebody slap me!

Sorry, this did make laugh, but only because you describe so perfectly the turmoil of hopes and fears and what-if?s that many of us (me included) will recognise from our own experience. I cannot recommend my own method of getting through it - quite a lot of White Burgundy was involved as far as I recall - but you will find your own way (and a better one, most likely).

Hang on in there!

Alison

Ha ha, Thank you Alison. I’ve done a little bit of alcohol distraction therapy but I feel too wobbly to drink enough to make me forget!

So far I have:

Had lunch with a friend

Had dinner with another friend (guess what my main topic of conversation was?!)

Made (and eaten most) of two cakes

Watched a film with the family (ate some chocolate)

Tried to sew a kimono for a friends birthday gift (concentration problems!!)

Cleaned the house (wore me out)

Ignored the ironing pile (I’m not that desperate)

Had a few little naps*

I know I’m actually really lucky to only be waiting a week for results but I will be very glad when that flipping letter arrives !!

Perhaps I should start that novel …

*quite a few actually

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I’ve always considered myself quite an impatient person, however since starting this journey 12 months ago (and counting) I now know I’m capable of extreme patience…unfortunately!

I like the idea of alcohol, for medicinal purposes of course, however severe inactivity has led to severe weight gain so I’m trying to be good

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Hi Libby76

Yes we all know and understand how worrying and frustrating this journey is, myself included. My journey is relatively short compared to some people on here. My first serious symptoms started at the beginning of March, so four and a half months now. But it feels like four and a half years sometimes. There have been so many days/weeks that I think of ms constantly or have mental conversations to either my GP or neuro. It is so draining and stressful. I do hope you have a good neuro that understands ms unlike the one I have. But thankfully I have a wonderful GP and after seeing him today he is going to refer me to a neuro in London who specialises in ms. Fingers crossed we all get a proper diagnosis in the end.

Marjie x

Yes, I find I am eating more and moving less lately so I know I should be good but it’s easier said than done. My lovely partner has told me he won’t push my wheelchair if I’m going to get really fat!

Thank you for replying Marjie, I hope you get some answers from your new neurologist. Mine does have a particular interest in MS so I feel that I’m in good hands. I just wish I could chat to him whenever I wanted!!

So the MRI was clear!! And I am pleased, but also confused and still very much left hanging. When I saw the neurologist (privately) in June he told me that since I was experiencing what he diagnosed to be a second relapse and said I would now be eligible for treatment and he was talking about techfedira and Aubagio and injectable treatments. Then when the summary letter arrived it said:

“I have arranged for her to have a repeat MRI scan of her brain and cervical spine and I will write with the results of these. She may require additional investigation including evoked potentials but we would be keen to avoid lumbar puncture. She is aware that the scan may show signs of Multiple Sclerosis in which case a range of drugs could be offered to her or may not conclusively show MS in which case an interferon could be offered.”

I haven’t actually received my official results letter yet but the very kind neurologists secretary did read it to me over the phone. She explained that the letter was brief and ran along the lines of something like:

"the MRI scan showed no visible signs of inflammatory myelitis and I will discuss this with Libby76 when I see her for her appointment in September "

So no mention of further tests or any other possible causes of my arm pain or eye problem, and now the wait begins again!

I was just wondering what other peoples thoughts were on this. In theory I know it is possible to have MS and it not show on an MRI scan (mine was done on a 1.5 T scanner) but really, what is the likelihood that this is MS???

I was told recently that although people on here have been saying the 3Tesla machines give better images, a 1.5 is quite clear enough for spotting MS lesions and changes.

It does all sound rather dispiriting Libby, but the good thing is no inflammatory myelitis. This means that it’s less likely to be MS, and while that’s sometimes disappointing, because of not getting a resolution to the symptoms, it’s possible that there is a solution with less longevity than MS.

And September may seem like a long way off, but it will come soon enough.

Sue

Thank you Sue,

Yes, I am obviously relieved that the scan was clear (and my neurologist said that a 1.5 t scanner was sufficient and that a 3t was so sensitive that to get a decent image the person having the scan would ideally be knocked out with a general anaesthetic to ensure total stillness) and I am very hopeful now that whatever is wrong is not MS.

My worry now is that the neurologist wanted me to go on a beta-interferon if the scan was clear and I feel that it is a serious step given the lack of clinical evidence towards MS, but I also don’t want to experience further potentially disabling relapses.

But yes, September is not that far away really :slight_smile:

Hey Libby76,

Its nice that your MRI was clear, but you nonetheless mentioned that you previously had a CIS diagnosis. On what ground was the CIS given to you? Did you present, at the time, clinical evidences acquired through tests such as evoked potential, MRIs, etc?

I am in the same box as you somehow, as I did have symptoms since a couple of months, at varying degrees, but my MRIs and evoked potentials were clear, so the neurologist told me that I categorically do not have MS.

Wishing everyone who read that message a good night or day.

Blue Marble

Hi blue marble thank you for your response.

my C.I.S. diagnosis was given after a thorough examination by my neurologist and from a detailed history of all my symptoms. Because at the time my MRI was clear I did query this diagnosis but was assured that my symptoms were classic and MRI was not necessary to be sure of diagnosis.

I am a bit sceptical that they could classify my current "relapse "as being due to MS without MRI evidence which is why I would like to have my evoked potentials and possibly a lumbar puncture done before I agree to take a beta interferon as suggested by my neurologist.

Libby what part of your body i.e. brain, cervical or lumber spine did you have your MRI on?

Marjie

Hi Marjie,

The MRI was of my head and my C-spine x

Libby, have all your previous scans been the brain and cervical spine? You should really of had a full spinal MRI too. Might be worth enquiring about.

I just checked, I haven’t had my lumbar spine done. I suppose they were going on the fact that my arm has been involved in both relapses so probably thought the problem emanated from higher up.

This morning I did remember that when I was discussing with the neurologist how sure he was that my symptoms are due to MS he had said that the only way we could know for sure was to examine all the little bits of my brain under a microscope. So I guess I’ll get my definitive proof when I die :slight_smile:

Well, that’s all a bit rum, isn’t it? Good news, obviously, but nothing resolved satisfactorily. Feel free to shoot me if I so much as breathe the words ‘time will tell’ because that would be a very annoying thing to say, would it not?

As you say, September isn’t far away, and you can see how the land lies then. I do know how it is to put these things to the back of one’s mind, or even pretend to. I hope you manage that better than I ever did.

Alison