misskimberleigh 19/03/17
Last reply 1 year ago
The Endless Relapse

I was diagnosed in July 2016. It’s now March 2017 and my relapse is continuing. I haven’t had a single day of relief and I’m doubting its ever going to end. My neurologist is optimistic it will end eventually and is confident in my diagnosis of RRMS (not PPMS), so I keep telling myself it’s going to get better. Has anyone else had such a long period of relapse before? Tell me I’m not alone and it’s going to get better.

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stumbler
1 year ago

Hi @misskimberleigh . I’m sorry to hear that you’re going through a hard time at present.

Given the lack of predictability of MS, you are really asking us to give an indication of “a length of string”!

Your Neurologist being optimistic is a good sign, but, what symptoms occurred at the start of your relapse and what symptoms are you experiencing now?

Also, have you had a recent MRI, with contrast, to confirm an active inflammation? And, were you prescribed High Dosage Steroids, to expedite your recovery?

These answers would give some indication of what’s going on. In the meantime, I feel your worry and stress over the situation. These negative emotions are counter-productive. You need to accept you are now in this situation and you need to try and “switch off”, to allow your body to recover.

So, don’t beat yourself up about it. Pamper yourself. Breakout the chocolate and wine. I’m not suggesting that you go out and “dance in the rain”, just relax and wait for the “storm to pass”.


cocofloyd1
1 year ago

Hi @misskimberleigh that sounds awful. Before being diagnosed I felt I had new symptoms on a daily/weekly basis which never went away. From Oct2014-July 2016 was a nightmare and I too felt it was never going to end but I truly believe now the stress of not knowing what was wrong with me added to this. What I started to do was write down a diary every time something lasted more than a day or so to show to neurologist and soon found that there was days/weeks I was actually ok and getting on. I now feel much better than back then as I now listen to my body and rest as much as possible and have tried to reduce stress, as I know this makes my symptoms flare. Hope you get over this rough patch soon . Take Care x


paris620115
1 year ago

I know how you feel, l was diagnosed in November 2016 and my symptoms have not gone away. In fact l can trace symptoms back to 2014 and did have some periods where l improved, but never back to where l was. But since last year l cannot perceive much improvement, the opposite in fact. This is probably why my consultant cannot decide yet if l have RRMS or SPMS.

I agree with other comments about trying to keep positive, despite that being very difficult. It’s made more difficult because you have to overcome those whispers in your head remind you of the negatives. They catch you out when you least expect it.

I don’t keep a diary as such, but l do record daily health & lifestyle aspects, including how i am doing diet wise. I record the supplements and l am taking, my spiritual well being and recently started with a very rough indicator of my mental wellbeing. Basically every day l just record if my overall energy level is a red, amber or green. When l am recording too many reds and ambers it does make me focus on what l can do to bring a few more greens into my week.


misskimberleigh
1 year ago

Hey there. Thanks for the quick reply @stumbler. I have had three MRI since July, full two week course of steroids and am currently starting Aubagio treatment. My disease is spinal in nature, so of course that brings its own set of concerns. I am only 30 years old so I am settling in for battle lately it feels. I’m very fortunate to be located in Toronto, at the centre for Canadian MS research so I really count my lucky stars but a day of relief would be amazing. Patience is a virtue I suppose.


stumbler
1 year ago

Well, you have age on your side, @misskimberleigh , which is a good thing.

How long ago did you finish the course of steroids? They’re not a quick fix, but help to expedite your recovery over the following 6 – 8 weeks.


misskimberleigh
1 year ago

@stumbler I finished the steroids in July/early August. It appears as though I have had layered relapses/additional activity which sort of creates the illusion of this never ending cycle. I think in these times, we are challenged to see how strong and capable we really are. Age is an interesting thing. I am glad that I’m early on, and fairly resilient right now however the overall longevity of my disease that I will undoubtedly endure is quite daunting. Lots to take in…including starting medication instead of starting a family. A tough thing to do, especially for my partner. It is in these times that I truly realize how unique this disease is for everyone for so many different reasons.


mmhhpp
1 year ago

Hi, sorry to hear about long relapse. Mine are always long too , 10 months to a year! But i never recovered completely and since 2015 going downhill withapprox 6 months of stability before i go down again 😡😡

It will get better! Just need waiting….. you are young and that helps to get it not so aggressive …. that is what they say though….

Take care


stumbler
1 year ago

@misskimberleigh , it sounds like you have an aggressive variant of MS, which suggests that an aggressive treatment is warranted.

Aubagio is one of the first level treatments, which suggests a conservative approach. There may be a better treatment for you, including one that may retain your maternal aspirations. Do your own research into what is available and what suits you best.

Don’t just accept the Neuro’s first suggestion. Have your own arguments and have an active discussion.


spunky
1 year ago

@misskimberleigh and @stumbler

Canada is very conservative regarding DMTs in my opinion. From what I know you HAVE to start with a first line drug and have to do poorly on it in order for Insurance to cover a higher level drug. Sounds very different from the more aggressive approach they take in the U.K.

I am on Aubagio (from Toronto too) so if you’d like to message me about it I can chat with you. I have been on it a year and so for I am doing well but my case sounds milder than yours having only one attack that lasted 2-3 weeks. Be sure you read the pregnancy warning on Aubagio. I was done having my kids before I started it.

Best of luck and hope you feel better soon!


marc_doucett
1 year ago

@misskimberleigh

Our storeys are very similar. I suggest that you have a look at the stem cell treatment being offered at the Ottawa General Hospital. I received the treatment in early Feb and feel like I’ve been reborn. No sign of my many pre-treatment symptoms.
If you have any questions, I’d be happy to share my experiences.

Good luck and remember there is hope.

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