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First Relapse- Confusing Situation PLEASE HELP!

Hey, Maybe someone on here can help because family and friends do not seem to understand the worry.

I was diagnosed less than a month ago after having symptoms (mostly sensory) for a month prior to that including optic neuritis in my left eye. My vision came back in my left eye after about 2 weeks and then I got another bout in my left eye that I have just started to see improvement from in the last 2 days. This morning I woke up with optic neuritis symptoms (headache, pain behind eye and discomfort when moving my eye) in my RIGHT eye which my MS nurse is explaining will be classed as a seperate relapse, but I don’t understand I have had not had a remmitent stage due to my other sensory symptoms not going (if anything I have got new symptoms that have got worse).

With the non existent remmitent stages and increase in sensory symptoms in different places since diagnosis should I be worried that I have PPMS?

I am a 21 year old female if that information helps at all. I guess I am just breaking down because I just want a bit of a rest or a break from all this new information and annoying symptoms. Please be honest with me if this is a crappy situation.

Thank you for all your help and sorry for the rant coverseyes

allo luv.

I understand your concern/panic! you are very newly diagnosed and have yet to absorb/understand what the chuff is going on.

I wouldnt jump to the conclusion that your ms is of the pp variety.

As I underdstand it from those with rrms, attacks can last a long time and even when they are in remittance, some sypmtoms can remain.

Do you have other symptoms apart from the eye trouble?

Keep a diary of what is happening and when.

Do you have a follow up appointment with your neuro?

It is good that your ms nurse is available. Do ring her again, when you feel further concern.

Never apologise for having a rant here. This site is full of people who are empathetic, as we know how you feel.

luv Pollx

Thank you for replying!! Now I have calmed down a little I do understand I slightly went from 0-100… It is all so hard to come to terms with. I have another appointment with my neurologist in early August. I am trying to document everything so I can dust go in with a list.

I have some really small balance issues, tingling/numbness in toes, slight shakes in my hands sometimes, random small muscle spasms (noticed when I am trying to sleep) and my memory is starting to ditter a bit. But as my ms nurse said I could think I have a lot of these symptoms because I hav read them and focus on them if that makes sense. None really effect my day to day life.

I hope over the next few years I will come to terms with this diagnosis because atm it is all a bit “Ohh really”.

Don’t panic!!! My first big relapse was in about 08-09 and started with double vision, but while that was slowly mending other things set in, such as poor balance, dizziness, tremor etc. eventually most of the symptoms went into remission, just residual tremor and sensory stuff, and since then I’ve had several years relapse free. I’m currently relapsing again, which started with optic neuritis, but then all the other things set in same as before. I’ve never established whether these are all one big relapse (with lots of different symptoms appearing gradually), or lots of relapses all rolled into ne, but to be honest I don’t think the distinction is that important. To answer your question though, no, I’m pretty sure it doesn’t mean that you have ppms because new symptoms have started before the original ones cleared. Boudicca’s advice is good, speak to your MS nurse and neuro when you see them, and hopefully things will settle down for you soon. Gxxx

Hi, I’m 32 and was dx in Dec following a year of random symptoms (sensory) and ON in my left eye in Nov. I then had ON in March and then Labrynthitis type symptoms at the end of April. I have seen my MSNurse and one thing I was worried about was if it was progressing to Secondary MS. She said not but I may have to consider second line treatment if I relapse again ‘soon’ (whatever that means!!) I haven’t seen my Neuro since dx and his non-committal initially bugged me but now I can see his sense in it. Whilst I am on RRMS treatment, he would actually label it as that. He basically wants to see how I go on over the next couple of years as, as we all know, it change or not. Basically, try not to worry. The body will do its thing and the medical support you get will watch it, and step in if need be. L x

That should read wouldn’t’ actually label. Blimen eyes :slight_smile:

Hi, I am hoping I can offer some reassurance more than anything. I was 24 exactly when diagnosed (great bday present) following a relapse… Sensory and optic neuritis. This passed within a week, however four weeks later following a bout of food poisoning …this triggered another relapse. This made me panic that I too was not RR however after chatting to the nurse and GP I stopped focusing on symptoms etc. Back then I mainly had sensory symptoms…these symptoms would come and go but this doesn’t mean it’s a relapse , this disease has symptoms and weirdly you get used to them. For example I’ve had sensations in my hands for three years this December. I am now 33, nearly 34, married with a little boy. I have got slightly worse however it still effects my life very little. I had a relapse last Jan which affected my left leg so this is a little weaker. However since 2004 when I was diagnosed I have 4 relapses, the last 3 since 2011 so not too bad really. I would greatly recommend keeping your fitness and weight tip top as I do think this helps. I up to having my son would be at the gym a lot and would run etc. Can’t help but think some of the reduction in exercise following having my son, may have led to my slight decline. I now do Pilates twice a week and try to do cardio exercise once a week. Hard work fitting it in with a 4year old :wink: What I’m trying to say is it didn’t stop me living…pre child I went on girlie holidays, stayed out clubbing, got silly drunk (not recommended :wink: ) and lived life to the full. I still believe I do this now…I probably rest more and listen to my body more…but I have a child to be responsible for now. (And I’m getting old now). Keep your chin up and don’t panic …one day at a time Hun. Oh and I was medication free up until last year…only take rebif and vitamins now. Xxxx