@mrspoffy 

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mrspoffy

Daily Symptoms :/

Hey guys. I'm coming up on the worst first anniversary of my life, the day i was diagnosed with RRMS. Feb 16 and I currently take Gilenya daily along with a host of other meds for different things but the reason I'm here, is since the relapse that initially got me diagnosed last year, I've had pain, burning, and sometimes numbness in my legs. I've had 3 relapses in a year if you can call them "re"lapses. I've had active lesions for almost a year, up until November. The one very large lesion showed improvement and no new lesions. My left leg HURTS constantly all the way up into my hip. It makes it difficult to walk. I've spoken to my neuro about it, but his response is that because I don't have active lesions, so the damage is likely permanent. This is difficult to hear, because I have 2 kids, one 5 year old girl and a 13 month old boy. :'( I can't help but feel dread and doubt when I look into the future. There were talks in October of switching me to Tysabri from Gilenya but since that MRI showed some improvement, they opted against it. I honestly don't really know that I'm asking anything at all, just needed to vent I suppose.
@Stumbler

@mrspoffy , Unfortunately, there are a lot of us that have to manage "residual damage" from relapses, caused by the remission not being complete. Burning, numbness, pins &needles are all types of sensory pain that we try and manage with specific medications. If your left leg is physically hurting, then this may have been caused by you naturally compensating for another weakness, putting unnatural strain on another joint. It might be worthwhile consulting a Neuro-Physio to assess your posture and gait. They can suggest exercises to address any problems. As far as relapses are concerned, the following website has a good definition of what is and isn't a relapse, https://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms . This may question whether you did have three relapses in a year. Our MS symptoms can be suddenly noticeable for a variety of reasons, e.g. being over-tired, fighting a normal infection etc. Use this as a warning to check for infections and/or rest up a bit. Not easy with a young family, but you need to schedule in a break for yourself too, possibly when your young one has a nap. Try not to worry too much about the future. No-one knows what the future holds, so don't start spending al your time worrying about things that may never happen. Enjoy the present. :wink:

@MsHackney

Can you try to get referral to a neuro physio? I saw one in the summer and they have really changed the pain I was in. Worth a go? Your ms nurse or GP should be able to refer you. Seriously I went from being in constant pain to now running in not really any pain.