im looking for any advice anyone is able to give. I haven t been diagnosed with ms but have a lot of symptoms. My first episode happened 11 years ago after the birth of my first son. I lost mobility in my right side. Was tested for a stroke but nothing was found. This lasted approx 3 months. Between then and now I have had 2 further episodes following head injuries at work(I used to work with young adults with severe learning disabilities) after the last one in 2013 I had mri of spine and brain and saw a neurologist, no legions on scans and by the time I saw specialist I was back to normal. Since then I have had recurring weakness in my right leg lasting no more than a couple of days at most, often less. 2 weeks ago the heaviness started again but this time I was shaking when I was walking, felt exhausted and started get a bit of numbness in feet. Went to docs who has referred me back to neurology. (2-3month wait) this week I’m even worse, can hardly walk, my legs feels like jelly, like I’m going to faint, all the time. Heaviness in my right arm as well now. I have been unable to do much all week. Unloading the washing machine took so much effort. My sister was diagnosed with ms about 5 years ago. What can I do to help myself whilst I am waiting for specialist
Hello
I can understand why you have fixed on MS as a diagnosis that could be the cause of your symptoms. Having a sister with MS obviously makes you aware of her symptoms and the similarity to yours.
However, as you had symptoms before, were given a spine and brain MRI and it was clear of lesions, that definitely says that you did not have MS then. Either on your initial occurrence of symptoms or the later ones.
An MS diagnosis relies very heavily on the presence of demyelinating lesions within the central nervous system. If you did not have lesions then, very likely what you are experiencing now is not MS either. See the McDonald Criteria, which is what an MS diagnosis is based on: McDonald criteria | MS Trust
Having a sibling with MS makes it marginally more likely that you too would be diagnosed with MS. It’s about a one in 37 chance. Have a look at this: Risk of developing MS | MS Trust but by no means is it more than a chance that you’d have it too.
The problem is that when you’ve had several episodes that look like the ones your sister had, it’s impossible not to wonder. But there are other diagnoses that share symptoms with MS. At least you’ve been referred back to a neurologist. You should be retested, you’re right about that, but don’t expect that you’ll be tested for MS and it will either be positive or negative. The neurologist will be looking at you not in terms of MS, but in terms of your symptoms, your history, physical examination and possibly with further tests. You’ll be seen as an individual, not just as the sibling of a person with MS.
Hopefully the appointment comes soon. If not, try phoning the appointments team at the hospital and see how long it’s likely to be. See if you can get a cancellation or a quicker appointment.
Best of luck.
Sue
Thank you for your reply. Ended up being sent to a and e by gp last night as symptoms worsened. Had a cat scan to rule out anything major and should be having an mri next week. My sisters first mri also showed no legions, several appeared over time though, although when her symptoms have been at there worse no new legions were detected. She suffers only with numbness and tingling, she has never had mobility issues. The body and the nervous system is a strange thing I will just have to wait for the results. I think it’s the not knowing and uncertainty of whether things will get worse that is worrying me.
Hi
Yeah, not knowing and uncertainty are rarely fun. It’s why people are scared of the dark - we don’t know what’s there. As your GP has already referred you to a neurologist and sent you to A&E, I’d ask them if they can do anything to speed up the referral, rather than potentially wait 2-3 months.
But in the meantime, try not to worry. That’s easier said than done I know! But stress won’t help, whatever it is that’s causing the symptoms. Do mindfulness meditations (try the Headspace app), every day make a list of things you’re thankful for, smile and laugh (even fake smiling and laughing is good for us, as our bodies still release happy chemicals, regardless of whether it’s genuine or fake).
Dan
Hi how worrying for you. stress mind makes everything worse. so i know its a stupid thing to say, but do try and not stress over it, as what will be will be and worrying over it wont make it any better.
what you can do if you can afford it is ask if you can see the Neuro privately. I did that back then it cost me about 100.00 for half an hour which was so worth it as I saw him in TWO DAYS.
If you cant then just eat well with lots of vit b12, D (go sit in the sunshine for 10 minutes), take deep breaths, enjoy your family. time will soon pass.
I hope its not MS, it could be anything as so many diseases seem to be doing the rounds now which have very similar symptoms.
but hun stressing over it is really going to take a toll on your well being. xxxxx