Hi everyone. For those who remember me I got my official diagnosis about three weeks ago after two releases in 7 months and lots of MRI lesions. I my last relapse I had pins and needles in both hands, intense dizziness and heaviness/numbness in both arms. In mid February my symptoms just got better and I have been feeling pretty well (apart from fatigue) since… Until this last weekend, when the dizziness returned with a vengeance. I now have pins and needles in hands and feet, the same heavy feeling, and pains behind my eyes (I can only describe it as stinging with a feelin of pressure behind the eye and a problem keeping them focussed When I left the neurologist after my diagnosis I was determined just to see how things went and so I dont have an MS nurse yet. So I was wondering, in the early days how do you tell what is a new relapse and what is the “new normal”? I know that often people are left with residual problems after a relapse but can these be occasional? I have phoned my consultant (as he advised) to see what his advice is (he has not yet got back to me) but I thought I’d see what the combined experience on here would say. Thanks and I hope everyone is having an OK day, Sam x
This is a really good thread Sam and I am also curious to know that answer to the question about “is this the new normal”? as I also have that exact same question. My symptoms are quite up and down, with v v mild new ones that come and go. I guess it is like having a new body almost overnight with new quirks that take a while to figure out and possibly settle down. I have been told the “nerve repair” can take a while, and is kinda a botch job anyway as the original myelin is replaced with a different material that isnt as conductive as myelin.
I’d personally expect a relapse to be something significantly new. I’d like to know from experienceed people though if I am right as my dx so far has been “highly likely I have MS” as I’ve only had one identifiable episode. I’m on the look out for a new episode to get a full dx :-S
This is a really good thread Sam and I am also curious to know that answer to the question about “is this the new normal”? as I also have that exact same question. My symptoms are quite up and down, with v v mild new ones that come and go. I guess it is like having a new body almost overnight with new quirks that take a while to figure out and possibly settle down. I have been told the “nerve repair” can take a while, and is kinda a botch job anyway as the original myelin is replaced with a different material that isnt as conductive as myelin.
I’d personally expect a relapse to be something significantly new. I’d like to know from experienceed people though if I am right as my dx so far has been “highly likely I have MS” as I’ve only had one identifiable episode. I’m on the look out for a new episode to get a full dx :-S
Hi Sam.
A relapse is something consistent with MS that lasts at least 24 hours and is not due to fever or infection. The other part of the definition is that it starts at least 30 days after the start of the last relapse. The reason for the last part is that it’s possible to keep getting new symptoms within the same (long) relapse before it finally remits.
Relapses can be of old or new symptoms (or a combination).
Given this, I’m afraid it sounds very much like you’re having a new relapse. And I would guess that your “new normal” is how you felt between mid February and this last weekend. Saying that, your new normal may actually be better than that - fatigue is often a precursor to a relapse for me; if your MS stabilises, your fatigue may ease a bit too.
It’s important that you speak with your neuro to get this relapse on the record and to get contact details for an MS nurse. I also think you should be asking about disease modifying drugs. They reduce the number of relapses and the severity of the ones we still have as well as delaying disability and progression - and it sounds like your MS could use a fright!
Please also see an ophthalmologist about your eyes. Your GP can refer you.
Good luck! I hope it’s a short one.
Karen x
Hi all
this is an interesting post for me too. I haven’t been diagnosed with MS as yet but I’m kind of running out of options as to what else this could be (looked at vit/auto-immune etc). I had a few lesions on my MRI and the neuro couldn’t say I did/didn’t have MS 3 months back. He offered me a LP/EVP if I wanted it, I have a follow-up this friday.
My symptoms started with pins and needles/ numbness/ worsening of symptoms with heat and then I developed swallowing issues intermittently and bowel issues as well as pain over the following months. All my symptoms now seem to vary sometimes the pain is worse then the swallowing then something else. Does this count as two sepearte episodes are these all part of the same episode if it is MS.
I’d be interested to here from the people who’ve been diagnosed for a while to see what their experiences are.
Reemz
Thanks for this thread Sam as I don’t know the answer either, I tend to put up and shut up as my gp is very quick rot refer me on, I then feel like I’ve wasted neuros time when I go and it turns out to be nothing. I’ll keep reading in search of an answer Chis x
Interesting thread sam. I was diagnosed last week and have been having symptoms over the past month. I first went to hospital because of my eyes, I couldn’t focus and was getting double vision really bad. Since my diagnosis I have noticed other symptoms and some I’ve had for a while I now know what they are. I think its confusing because I know I don’t feel right but how do you distinguish between a symptom and an everyday occourance. For instance do I have fatigue due to ms or is it because I’m unfit. Im sure its a combination of the two. Thanks again for the thread. Adam
Thank you all for your replies. I am nipping in to see my consultant tomorrow (the perks of being a medical student is that I am always at the hospital) and I am going to ask to be referred to an MS nurse. My eyes don’t seem to be getting worse so perhaps it is not a relapse, but it has made me realise that I need a bit of extra guidance through these early days!! Thanks and best wishes to all.