Hi Chatterbox,
I’ve been made to feel ‘demanding’ (yes, almost neurotic!) and a nuisance for calling up the neuro’s secretary to ask for blood results (they never got back to me after I called either). I know they are busy, and the strain put on the NHS is horrific and unfair…so I’m not blaming them personally…but…yeah it’s good to know I’m not the only one who wants to have answers. It feels so weird to know that there is information out there about your own body, that you have to ‘fight’ to try to unearth…
How did you end up getting a second neuro? Was it through a second opinion? How did you find out if your initial MRI was with or without contrast?
Yeah, exactly as you say, it’s the ‘wait and see’, having only had the one MRI (no lumbar puncture…etc…), while having been given such a high chance of converting to MS that I’m finding hard to accept.
Thanks for making me feel less alone in this!
Hi Alison,
Thank you, so helpful to read your experience and insights. Wise words - defining a new OK. I think I’m struggling these last months - with periods of bad fatigue throughout the day - to accept that the new ‘OK’ may be far less productive at work than the old one. But productivity isn’t everything, I’ll just have to find ways to be more efficient…
I have been a bit of a mess since the initial scan - but because I’ve not got a diagnosis other than CIS, I feel like I’m not allowed to be upset, or as though I’m being a hypochondriac. If I do mention symptoms to friends, they tend to say things like “oh but everyone is tired in the winter, maybe it’s just that?”, or “maybe you’re just noticing these things now that you’re scared it’s MS?” I suppose I’m lucky in that way, that my symptoms are relatively mild and non-specific.
Had a good chuckle at the “immoral, illegal or hazardous” - yes, I think work is definitely my choice of poison/distraction too!
A
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Re: people minimising your symptoms and telling you there is nothing unusual the matter…
Friends and family like one’s life to have a nice smooth surface, it seems to me. When alarming cracks start to appear on that surface - when one gets a diagnosis of CIS or MS, for instance – they rush to paper over those cracks to make themselves feel more comfortable and preserve their comfy illusion that life is all nicey nicey. A more charitable way of looking at it is that they are trying to make you feel more comfortable too! Either way, it can feel very isolating and lonely, as most of on here know. It hurts, but try not to take it personally.
Alison
No probs at all.
To answer your questions.
If when you had your mri part way through they pulled you out and injected a dye then it was with contrast. I have read (cu what I’m like!) that there is some new way of doing contrast without using dye - but not quite sure how it works. The other way is phone up the legal medical records dept of your hospital. Under data protection laws you can request copies of all scans, tests etc. There is a max charge of £50 for this if I recall, but if you just want electronic copies of digital X-rays I think it’s only a tenner for all the digital mris and X-rays you have had in your life ( if you were so inclined) I only wanted my Neuro ones, been a horse rider and unfortunately had a car accident I’ve had a few whoopsies and I think my computer wouldn’t handle the strain of all that data. Anyhow the images state what they are, ie T1, contrast, flair etc.
I got a second opinion as I had read optic neuritis had a 50% conversion rate, increasing if initial mri wasn’t clear. I stated I knew this to Neuro one, said I wasn’t convinced with his explanation, of its all down to your migraines. He looked at me and said he would refer me to the Neuro ms. So, neuro no 1 worked in same department as neuro no 2. Neuro no 2 looked at same mri and said some of the lesions looked inflammatory and referred me for further tests. Rest is history.
Also, knowing that for years I just haven’t felt quite right and having a history of bad migraines it was also about calling time and saying, no, I want a proper look, answer.
Hope this helps.
Hi thanks so much for your reply. I started feeling better so I cancelled my follow up appointment thinking it my be only my ME . 6 seems later i woke up all was back worse plus i couldn’t control my legs (,like jelly),and my right leg gives say and i limp.sent back to the doctors he did tests and referring me to a neurological and a mri scan. He was a different doctor and seemed worried i feel a little worried myself now
My dad keeps saying if I think positively it won’t develop into ms and my mum says I don’t help myself. I’m bed ridden about 95 percent of the time due to extreme fatigue whjch has come on all of a sudden. I was diagnosed with cis in January and not put on any dmds either. How do people cope with comments such as but you don’t look sick and the toughen up approach? It really upsets me.
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People are projecting their own stuff onto the situation. Your parents want you to be well - of course they do. They want positive thinking and a bit of pulling up of socks to make everything OK for you of course they do.
If you can, try to make some space in your mind to feel sympathy for them in their distress. For sure, their distress is expressing itself in ways that are not helping you much right now, but that’s not really their fault. They love you and they are frightened and at sea too. Sometimes it is the person who is sick - regardless of age - who has to be the emotional grown-up around here! In a strange way, doing that role can actually make a person feel better and stronger.
Alison
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Thanks for your kind words x