Hi All,
I’m new to the site and wonder whether any of you can help. I’ll try and be brief with my circumstances.
Started having numb feet and legs in 1st week of May this year. After a week I noticed problems bladder and bowel issues. Went to see GP who did a referral to Neurology Dept at Norfolk and Norwich Hospital. Within a week the symtoms got worse in that my legs weakened, balance gone and the feeling that I had sharp gravel under my feet all the time. Also the feeling that my toes are cold but when you touch them they’re warm. Went back to GP and he sent me straight to hospital.
Stayed in hospital for 9 days where there did a spinal MRI scan, a head MRI scan and a Lumbar Puncture. They found lesions on my spinal scan and old lesions on my head scan. Still awaiting results of spinal fluid ocligal band tests. (hopefully get them this week). I was given 3 lots of steroid infusion over 3 days which definately helped with balance and improved leg strength and after seeing physio I was allowed home with a “Probable MS” diagnosis. The only presciption I have is 5mg of Baclofen twice a day to supposedly help with my feet and leg sensations.
I have follow up appointment with the Neurology dept on 16th July.
My questions are:-
When can I expect a descision as to whether it is MS?
When can I expect any improvement in my current symptoms ie still “walking on gravel”, numb legs, bladder issues, bowel issues and then two days ago getting a desensitised feeling in my right arm and right fingertips.
It’s now been about 5 weeks since the intial symptoms occured and its really starting to get me down.
Any comments or advice would be really appreciated.
Many thanks,
Andrew
Hi Andrew, I’m sorry, but I don’t want to fib to you; there really are no firm answers to these. Not only is everyone different (that’s assuming it even is MS), but every attack can be different. It’s pretty rare not to have any recovery at all, BUT it can take days, weeks, or even months, and there’s no test or predictor of how long it might be for you this time. I do not know whether they will be able to treat the “old” (inactive) lesions in your brain as confirmation of an earlier attack. I don’t think they did for me, as they could still have been from an earlier part of the present attack, if you see what I mean. It makes a difference re diagnosis, as you usually need at least two confirmed attacks, OR MRI evidence at least a few months later, of new activity. The reason is that it is possible to have just a single MS-like attack, which never progresses to the real thing (doesn’t satisfy the “multiple” bit), so they are usually very, very reluctant to diagnose after one episode, and want to wait to see if it happens again - which, in some cases, it never does. I’m not sure why they’ve given you Baclofen to help with numbness or the sensation of walking on gravel, as I have never understood it to treat those things. It is basically a muscle relaxant, so it can ease things like cramp, stiffness, and spasms, that many people with MS suffer from to some extent. It’s not a painkiller (although it may indirectly reduce pain by easing the muscle tightness), and I don’t think there is any drug (with the possible exception of steroids - which you’ve already had) that reduces numbness. This is because it’s caused by sensory signals being unable to get through. Although you can take drugs to dampen down unwanted sensory signals such as pain, there are none that can replace a signal that simply isn’t there. Don’t get me wrong - I’m on Baclofen, and find it an excellent drug - they just don’t seem to have explained very well how it’s supposed to help you. 5mg twice a day is an extremely low dose - usually just a starting dose - and I’m surprised you haven’t been given permission to gradually increase it for maximum effectiveness. It’s doubtful, IMO, whether such a low dose would be doing much - but conversely, if muscle tightness is not an issue you’ve had, it’s questionable why you need it at all. I think you should report the new symptoms with your arm, as the onset of symptoms MAY be long enough ago for them to treat this as a new episode - however, as you haven’t recovered significantly in between, my guess is that they’ll treat it as still part of the same thing. But report it anyway - it all adds to the jigsaw. MS, I’m afraid, is notoriously difficult to diagnose, as there is no conclusive test, so often there’s a lot of watching and waiting, to collect just enough evidence. Try to rest assured that this is a normal aspect of diagnosis, and not a sign that your case is not being taken seriously, or that anyone is slow or indecisive. Typically, neurologists do not seem to explain the great weight of evidence they need before they can make a confirmed diagnosis, and this can lead to suspicions of negligence or indifference, when the real position may be that their hands are tied until something else happens. I know this will not be what you hope to hear, but I just wanted to prepare you that instant yes or no answers are a rare thing with MS - it doesn’t (usually) mean anyone’s mucking you about - just that they don’t yet have a full enough picture. Tina
Good advice from Tina.
Recovery from an MS relapse can happen quickly or slowly. In my own experience, the 3-day blast of IV steroids can ‘cure’ one acute symptom (literally) overnight while another aspect of the same relapse takes months to get as much better as it is going to. The only rule is ‘wait and see’, I’m afraid.
I hope that things keep going in the right direction for you, and that you get to the bottom of what is the matter before too long. But getting from ‘probably MS’ to ‘definitely MS’ can take time and - and please do hang on to this heartening thought! - sometimes never happens. Either way, there is most likely some waiting ahead of you. This is frustrating, but not necessarily bad, if you see what I mean: for as long as you are not formally diagnosed, there is hope that it isn’t MS. An MS dx isn’t the end of the world, but it isn’t great news in any language. Don’t be in too much of a hurry to hear that diagnostic door clang shut.
Good luck with it all.
Alison