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Relapse

I was diagnosed 4.5 years ago with RRMS and have been on Tysabri for the last four. This morning I woke up feeling awful. Some of the things that i’ve been experiencing are chest tightness, more fatigue than normal, knots in the back, bloating and worse mobility.

I believe that i’m relapsing, first one since before diagnosis. And its still going on

If i’m honest i’m scared. What can I do, who can I contact if anyone.

Ladies and gents i’d appreciate some feedback

Ade, there are others who are better placed to help you I’m sure (I’m PPMS) but a swift phone call to your MS Nurse tomorrow should help. Suggest that if you have to leave a voicemail make sure he/she understands how urgently you’d like to speak to them.

Tippy x

Ade

whilst waiting for your ms nurse to call you back, make an appointment to see your GP.

s/he may be able to offer something for the bloating at least.

i managed to identify gabapentin as the cause of my bloating so gave it up.

chest tightness maybe needs investigating too,

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Ade not everything is down to MS. Your symptoms dont sound like a relapse personally, bloating etc, you could have eaten something which has made you feel that way, and tightness in chest should be checked out. I would ring your GP first and make sure there is nothing else going on.

I bloat like a pop bellied pig if i eat anything with gluten in it lol and well windy city has nothing on me.

Tightness in the chest could be anxiety, but it still needs to be checked out. good luck. x

Ade

As others have said, it is possibly a relapse. So you could contact an MS nurse if you have one, or your GP. There are also the nurses you see at the Tysabri clinic. Do you have their contact details? If they agree it’s a relapse, they could even organise some IV steroids, which I’ve always thought were preferable to oral.

Your neurologist would be someone else you could contact, it’s important that if it is a relapse that you get it recorded as such. And s/he might even want to do an MRI, just to be sure. So you could ask the nurses at the Tysabri clinic what they suggest. In fact I think they are probably your best first point of contact.

Best of luck

Sue