Hi I have recently been diagnosed and I want to thank everyone’s replies to my previous post but really could do with some support. The first few weeks affected my left side, face , arm and leg and this has improved but I seem to be getting new symptoms all the time. My right hand is tingling and sensitive and I have been getting ressless legs and a small amount of twitching in my legs when falling off to sleep. I didn’t expect to experience new symptoms 4 weeks in to my first attack and as I am experiencing symptoms on the other side of my body I’m worried this is another relapase before the first has even started to wear off. Is this normal how can an attack on right side of the brain be now effecting that side. I haven’t had any contact with the ms nurse yet, I did call on Friday But she is off sick so I really have no one to ask as I went to my doctors on Friday who basically knew nothing and kept telling me to speak to the ms nurse. I know a lot of people get these symptoms do they go away or is this part of everyday with ms and when do you know to get help. Thanks Zoe.
Relapses are never terribly predictable. Sometimes they are nice and simple, they give us one or two symptoms which get worse and then better. Other times they come in sort of waves: one thing builds and then another thing joins in, and then maybe some more… and they get worse and then better at different rates, but ultimately it all calms down. This is the reason that new symptoms starting within 30 days of the first batch are counted as part of the same relapse.
There are various possibilities for your new symptoms. One is that you are simply noticing them more now that the other symptoms are improving. When I say “you”, what I really mean is your brain - the brain can only pay attention to a certain amount of stuff at one time and the loudest things tend to get the attention, so now that your brain is getting used to your left sided symptoms (which means that so are you), maybe it’s simply got the time to start paying attention to the ones on the right. I know this sounds quite ridiculous, but it really is a factor. Another possibility is that you have or are coming down with some virus or infection. These can cause what is called a “pseudo relapse” - if it’s an infection, antibiotics will get rid of the symptoms as well as the infection; if it’s a virus, time will do the same. It’s important to get a UTI (urinary tract infection) checked for even if you have no UTI symptoms because they can be asymptomatic, but play havoc with our MS. Other possibilities are that these are new symptoms in the same relapse or that you are starting a new relapse. Whether or not it is classed as a new relapse is all about NHS definitions and doesn’t actually change the fact that, if these really are new symptoms, your MS is still active and creating new damage 
The better news is that people with RRMS do get times when their MS decides to take a break, so if this is a relapse, it will eventually go into remission. It’s hard to be patient, but knowing that there will be an end can help a bit.
You’re right that most people with MS have daily grumbles too. Learning what’s “normal” and not normal takes time though. A brand new symptom is always something that needs to be checked out though.
If this turns out to be a new relapse, then the only thing that the MS nurse can offer to help you is steroids which are not the sort of thing that are recommended for less than major relapses as all they do, when they work, is to reduce the length of the relapse (they do not change the severity of any remaining symptoms once in remission). If you are finding things difficult, then there are always meds to help with symptoms: things like amitriptyline, pregabalin and gabapentin help sensory problems and neuropathic pain. Despite what your GP says, he/she can prescribe these, but they do get a bit of hassle from the PCT for it so it’s usually best to get the OK from the nurse or neuro. So, since your nurse is off, why not give the neuro’s secretary a call and ask them to get a recommendation for you to pass onto your GP? Most secretaries are happy to help.
Do call the nurse again tomorrow and if he/she is still off sick, give the secretary a call. Hopefully this will just be the tail end of the same relapse, but you should probably get it on the record anyway.
Karen x
Thanks Karen, what you have said makes sense looking back I have had short periods of pins and needles in the right but thought it was positional after the lumber puncture the last few days I’ve noticed it more especially first thing in the morning and evening and it does wear off so I’m sure its all part of the same attack, its also time of the month which I understand can make things worse, so an emotional weekend for me. I will try the ms nurse tomorrow . thank you so much for taking the time to help others when you have your own ms to deal with being able to ask questions and support is invaluable.
Thanks Karen, what you have said makes sense looking back I have had short periods of pins and needles in the right but thought it was positional after the lumber puncture the last few days I’ve noticed it more especially first thing in the morning and evening and it does wear off so I’m sure its all part of the same attack, its also time of the month which I understand can make things worse, so an emotional weekend for me. I will try the ms nurse tomorrow . thank you so much for taking the time to help others when you have your own ms to deal with being able to ask questions and support is invaluable.
Hi, have you been told what type of MS you have?
If it is RRMS or SPMS, there may be some treatment to dampen the symptoms down.
But why not ask your GP about quinine for restless legs? I take 300mg at night and it does help…not completely but some.
karen has given you really good info/advice. Isn`t she a gem? many of us regard her as an oracle at unravelling medi-speak for us!
Look after yourself.
luv Pollx