Hi All.
I’m messaging because my sister has suspected MS and I need some advice.
It started with a short spell of headaches and eye aches and stabbing pain in her neck. GP wouldn’t take it seriously so she paid for a private brain scan which we were shocked to find out showed some lesions. She has now been referred to a neurology team at Chester and had an initial consultation, where they basically said to her that she can either go for the lumbar puncture test to see if she has MS or she can carry on living her life until she starts to develop proper symptoms, and then get the test. The consultant seemed to suggest that my sister could have carried on living her life for the forseeable without any real MS symptoms and the worries that comes along with them, and it’s only because of this private scan that she knows she potentially has it.
My question to those of you living with MS is, do you think it’s a good idea for her to go for the lumbar puncture or just carry on as normal until she develops stronger symptoms later down the line?
Neither of us know anyone with MS so we don’t really have anyone to talk to about it who has a real insight.
She is a postwoman and loves her job, so a diagnosis will inevitably complicate this. I’m also unsure how it effects things like insurance etc.
It’s hard to know what the right thing to do is, is knowledge power or ignorance bliss?
Thank you for reading this. I have the upmost respect for anyone that lives with this condition
The general advice/ recommendation is that the sooner MS is treated the better, or put it the other way, the longer you leave it the worse it will get. So, my advice is yes - get the lumbar puncture.
It might not be MS but there again it’s possible that it is and the sooner identified and treated the better and the more likely that your sister will be able to carry on with work and life.
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She’s stuffed on things like critical illness insurance already, so that’s not a consideration. As soon as you’re under investigation, it’s game over on that one. Life assurance is still okay and ok even if it is MS, so that’s not an issue either.
30 years ago when there were no treatments worth a damn, you might as well not know as know. By the time I was dx 25 years ago, that world had already changed. Now it’s transformed beyond recognition. There is now every reason (in my opinion) to know and to take steps to protect oneself and help stay as well as possible for as long as possible.
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Just be aware that you can have a negative Lumbar puncture and still have MS. I am one of those people.
My neuro thinks I’ve had MS for years although it was only diagnosed last year.
My MRIs clearly showed multiple lesions and demylination but due to the negative LP it took 3 years until a new lesion was found that I received a formal diagnosis.
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Diagnosis of MS is notoriously difficult. There are many mimics and any active treatment of it uses serious drugs which you would only take if you were certain you had the disease.
A lumber puncture is part of the investigative process. The results will be compared with blood tests to see what has passed to the brain/spine.
Some symptoms are more immediately indicative of MS but almost anything could be associated.
An MRI report alone is not sufficient to diagnose MS but most brains have lesions as they age.
While early treatment is now often recommended, it is only started when MS is securely diagnosed and this takes time unless things are very clear cut and all other possibilities have been excluded.
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Thank you. Yes I’m inclined to agree about an early diagnosis. Reading these posts has made me realise that it won’t necessarily be diagnosed with just the lumbar puncture either, so maybe best to get the ball rolling sooner rather than later
I actually haven’t done my research on things like life insurance and critical illness yet, although I’m pretty sure she has life insurance that covers critical illnesses anyway. Thank you for the advice, I think I’d be leaning towards starting the testing process if I was her
Thank you for the response. Maybe it is best to get the ball rolling sooner then
Thanks for the info. Perhaps best to get the ball rolling sooner rather than later with testing then.
Well, good for her. I managed to miss the boat on critical illness insurance, alas!