Hi all. still un dx but report so far bilateral periventricular white matter changes with small new area of change around posterior aspect of left lateral ventricle. No enhancement with contrast. This was April.
Neuro rang today who referred me to QE for MS specialist who i’m not seeing until 16th Oct and said 2 new white spots since last MRI.
I had a spell for a few weeks of right leg weakness and tremors in right arm.
My neck and shoulder pain also started again for a few weeks.
Could these spots have caused this as i have been off work since january, tried for 3 weeks in may to
go back but dad had heart attack and i went downhill and don’t seem to have been right ever since.
It does sound rather likely that the new lesions caused the new symptoms, but I guess they are having to be careful about diagnosing you because of the complications
It sounds like timing is an issue for you so maybe you could ask your GP to try and get you an earlier slot? Or maybe phone the appointments line and ask for any cancellation? Also, if this neuro is nice enough to call you at home, perhaps he might try and help?
Re finances: have you applied for DLA? It might help a bit?
Mobility isn’t as simple as being able to walk or not as far as DLA goes. It’s also about how far you can walk, the speed you walk at and if it causes you pain or discomfort. Worth having a look at the benefitsandwork website to see if you might qualify.
(When I first applied, I got high rate mobility because although I could walk pretty far, I had to keep stopping for a breather and was getting overtaken by OAPs!)
Thanks for that I will look into it. Could I also ask for an honest opinion off all of you? If my MRI done oct 11 until MRI done march showed changes and now I have 2 further spots, is it likely to be rrms or more aggressive ? Honesty even though it’s only an opinion won’t scare me i just like Different view points of what may be if it is MS. Thanks again Sonia x
I can’t have the LP because of my blood disorder. Neuro was too worried as I’m on anticoagulants. Good job my kids keep me going especially my daughter. She is 14 with a great sense of humour and cheered me up by saying I Remind her of ET as they kept testing him and couldn’t work him out! Think my genetics must be well messed up, hope you get some answers Soon. Sonia x
I honestly can’t tell you, sorry. The increase in lesions certainly suggests that it might be highly active at the moment, but this might change; MS makes a habit of that kind of thing! (E.g. my MS was full on in 2010 and my neuro added the words “highly active?” to my RRMS diagnosis, but it calmed down during 2011 and has been good since - and I’m back to just plain old RRMS.)
Tbh, I really recommend just sitting back and waiting to see what the experts say. But it’s a great question to ask if the neuro does diagnose RRMS, because it might influence getting on DMDs straightaway and possibly the really effective ones (if that’s what you want of course).
Thank you for that, I had a conversation with my GP earlier but he tries not to say too much although he does give his honest opinion. This is not far from what I am expecting tbh. Thanks again Sonia x