I’m back here after a long period of time because I’m lost and stressed.
I was diagnosed with MS two year ago during my first “attack”, i don’t know how to describe it otherwise.
A month ago i did my third brain MRI and first spine MRI.
They found that i also had lesions in my spine MRI but all of my lesions are inactive. I’ve never really believed my MS diagnosis, i always think that it’s something even more rare and i could die at any moment. My brain MRI said : without ADDED spatial and temporal lesions. My spine MRI said : without spatial and temporal lesions. I’m a hypochondriac so I started reading about these stuff and came across how you should have spatial and temporal lesions to be considered to have MS and it could be some other problems ect.
My doctor didn’t say that it might be something else. I’ve seen 4 neurologists (Two of them were specialised in MS) but they’ve never suspected anything else. Like from the second they look at my MRIs they all say it’s MS.
I wanted to know if anybody else had problems like me or a hard time believing their diagnosis. I’m not an expert but i spend hours reading articles from 1990 until now only to feel worse. I always think how is it possible to have more lesions if i didn’t have a flare ups like the first optic neuritis i had.
At this point i can’t even do my daily tasks because I’m in so much stress and sadness.
Any advice, any experience … anything would be helpful at this point.
According to the McDonald criteria lesions should be separated in both space and time.
Don’t drive yourself demented thinking the MS specialists are wrong.
Have you been offered a DMD (disease modifying drug)?
In your research have you come across the McDonald criteria?
Anyway you need to ask about DMDs although it is your choice of whether to take them.
It is worth reading up on them so that you know what the neuro is offering.
You need to get a grip on your anxiety because you could ruin everything.
Talk to your GP who could offer you a course of anti depressants or counselling.
There is no shame in being on anti-depressants.
Try mindfulness meditation which is brilliant. I recently have been suffering from the MS hug and last night I did a spot of mindfulness meditation which calmed me down enough to get a few hours sleep.
I hope you manage to find your way through.
Try promising your self a treat, coffee with a friend (socially distanced), Tickets to see a play/film/band. Don’t forget that you are entitled to a free ticket for a carer so the friend can go free.
That they think the lesions are inactive is good news. I think you need to get your GP to explain the actual meaning of the words used, so you can properly understand.
I must admit I can’t work out quite what they are meaning here, but think as Carol said it is to do with occurrence of lesions over time and space, rather than referring to an actual type of lesion. It reads to me that you’ve got lesions in your brain, but they have not changed since your previous MRI. I read the spinal MRI as not showing any lesions, (though it might possibly mean you have no active lesions, not knowing their medical shorthand). I would want it properly explained. Ambiguity can lead to unnecessary worry.
And I would second Carol’s advice on talking through with your GP about your anxieties, and how it is currently affecting your ability to do your daily tasks. They can help with that.
Hi, having MS specialists examining your results can only be a good thing.
I would believe them. Googling and reading stuff we arent qualified in can only cause us distress…so you probably dont need me to tell you to stop reading that stuff!
As a self confessed worrier, it sounds like you need to speak to your |GP about this and maybe he can suggest something to help eg CBT or Mindfullness…these will help you calm your thinking.
MRIs are an amazing invention and I believe have revolutionised our understanding of MS.
However, the things that are observed are not a perfect predictor of our symptoms and even less what our progression will be.
My limited understanding is that symptoms can result from both lesions in the brain and those in the spine. I am “lucky” in that I have both. I have only ever seen the reports from the radiologist rather than the pictures. This slightly concerned me initially, but I realise now that knowing more would not actually help with my treatment. Knowing the lesions have “settled” and there are no new ones is what I needed to know. Knowing there were more or they were active might mean my DMT needed to be reconsidered.
Different consultants have different interests. The one I have seen to date has the role of determining if I should have a DMT and which ones are appropriate choices. He uses my MRIs to inform that choice.
Brain plasticity is not often mentioned, but it is a way of describing how your body works round the damage MS causes. A good Neuro Physiotherapist will give you specific exercises to help with this. These should be viewed as an addition to the normal exercises.
Falls between more specialist and generalised advice.
I was sucked into concerns/worries about my MRIs, but now realise they are a dead end and of little or no value to the patient other than helping with the diagnosis and limited ongoing monitoring of the condition.
Thank you for your answer. Here in France, neurologists don’t really explain anything. I know i’m a hypochondriac and i should have never tried to read what it was written and try to understand it.
Yes i take Copaxone and apparently it’s not really helping me. I think i should definitely go see my GP because i’m in so much pain and stress right now it’s horrible
I will try the mindfulness meditation thank you for your advice and i hope that your MS hug will disappear soon.
Yes you are right. I wish i could stop searching all these rare fatal diseases all day long and get back to my “normal life”. Knowing that i’m not alone in this helps me.
