MRI results more confused

Just had a letter from neurologist(gp letter I was cc in to) no scan report attached reads - you will note that the scan shows no abnormality of concern. The little irregularity is of doubtful significance. I will discuss the results at her review appointment. So unsure what this will mean from now. Have some electrode eye tests 17th feb then neurologist end of feb/march. Unsure what this means and what they will do about symptoms. Have asked if they can look at the medication they prescribed as on 30mg of amitryptiline and it’s doing diddly squat now still waking overnight as a result of the pins and needles/ numbness in arms and or legs and impacting day to day. Really don’t like this limbo land and it feels like I’m stuck out of the loop. Going to see if GP will print me a copy of MRI off their system.

Hi x

Not totally sure, but because the letter refers to the ‘irregularity’ as singular, little, and of doubtful significance it sounds as though this irregularity was perhaps not highly suggestive of MS.

I was told that a totally ‘clear’ MRI shows absolutely no abnormalities, marks, or dots - but that some MRIs that fall within ‘normal range’ actually show tiny non-specific marks or dots, that are commonly found as people age (more common after age 30 / 40), and as a result of headaches etc. The neuro is not only looking for whether there are ‘irregularities’, but what the number, size, shape and location of these irregularities might be. I am not a doctor so cant say for sure, but is sounds to me as though the irregularity on your scan is not immediately consistent with MS.

My guess is that they will continue to monitor you - I am not totally sure, but I would imagine that having a ‘little irregularity’ on MR, combined with symptoms, would hopefully be sufficient reason to be kept within the system. If your follow-up appointment with neuro is in a month or so, it is probably unlikely they will be able to bring it forward much earlier, but you could ask GP for help in the meantime - he / she may be able to increase or change pain medication while you wait to see specialist? It is frustrating to feel that you are being kept out of the loop but it might be that at this point there is perhaps not much more information that they are able to give you… limbo is not a nice place to be x

Hi Daisy, yeh, it`s the pits in limboland, I know.

Ive been poorly 16 years now and have been in and out of limboland and am sort of half in and half out now...........and its looking like this will be my residence` for the future…unless someone comes up with a different idea and to be honest, i feel i am ready for anything!

As your latest MRI showed little or no singnificant evidence of MS, a diagnosis cant be given.

The electrode eye tests you mention…I think this could be where you are hooked up to a screen and measurements are taken showing how quickly your brain spots them…right? I think that`s what is called a VEP test.

Can I ask what your sypmtoms are?

As regards medication for pain…I take amitriptyline…75mg at night. It keeps some of my extreme pain at bay.

There are other nerve pain meds, such as gabapentin and pregabalin. I take the latter…but it isnt doing what I hoped it would, for my chronic heel pain in bed.

My current diagnosis is;

spastic papararesis/cause unknown/could be genetic.

I have no mobility left, am hoisted for all transfers and need carers for many things.

luv Pollx

Hi anon and Poll. I have only had symptoms since July 2013 prior to that other than feeling extremely tired all the time I lived a normal active life other than having well controlled asthma. I am 31 and have a great life no stress, I enjoy my job have a teenage daughter and a good long term partner. Started in July with varying pins and needles, burning, skin crawling sensations with numbness but awareness of pressure/touch if that makes sense. Episode of blurred vision and eye pain 3 months after the sensations started and then a further episode of eye pain a few weeks ago in the same eye. Gp ruled out b12 deficiency, anaemia, diabetes, thyroid, calcium problem do referred to neuro. Saw them end of Nov a locum did not do complete neuro exam: checked reflexes those on left side brisk, patchy sensation loss when pricked with needle, got me to look as she moved her finger and tested for weakness by asking me to push against her hand. So she referred for MRI which I had 4th jan. Started me on amitryptiline but said I couldn’t have more than 30mg. This is making no impact on symptoms now and I’m fed up of not getting a full night sleep. Pushing myself to carry on as normal I own two high energy dalmatians and pre July even with tiredness walked them 3-4 hrs per day this is now proving difficult. The gym was unbearable as the sensations increase in intensity when walking, working out, hot shower and in bed/laid down. Managed to walk for hr and half with them this morning my mother came to pick daughter up not long after I had got back and said I looked shocking. Partner and work colleagues has pointed out that memory is getting worse as I struggle to recollect conversations or even things I have said or done also that I have started doing some word substitutions. Only other thing that has cropped up over last 6 weeks is that when I ride and try to mount and lift legs for exercises onboard and to slip legs in stirrups they feel numb and heavy also clumsiness has increased. Thank you for your kind replies limbo totally sucks I come on here and see so many people in the same situation. I just feel I do everything I can do and yet symptoms still here I have little stress, relax, keep fit, eat a good varied low fat diet and have eliminated all cakes, biscuits etc etc low caffeine argh. Feel stuck until I know what if anything this is as we were going to try for a baby but daren’t incase makes symptoms worse or prevents me from either having screening or could affect results. Poll that must be really hard for you. Feel a bit of a fraud for moaning when I read some peoples stories. I just want my life back Thanks for listening to me moan sometimes good to get things written down xx

Hi Daisy. Ive just joined limboland after feeling different symtoms for about 2 years now but never linked them together till now, GP just referred me to neuro so waiting for my first appointment, although i did see one last year who said my hand numbness and pain was from my elbow which my GP now disputes.

Hi Mac thanks for your message. I hope you are not waiting too long and find some answers soon. Limbo land is rubbish as you have no idea of the prognosis could wake up tomorrow with all symptoms gone or it could go on for years never knowing what is causing it or how long it’s likely to last xx