redrighthand 25/02/17
Last reply 1 year ago
Detachment

Hi, I’m a 30 year old guy recently diagnosed with RRMS. I woke up one morning in October with sudden double vision and slight balance issues. I went to see my GP and when I mentioned previous incidents (two periods of numbness and a period of deafness in one ear), he referred me to see a neurologist in A&E. After numerous blood tests came back clear and a CT scan showed what appeared to be a lesion, I was told that the most likely cause was MS. I had an MRI scan the following week and when the results came back a few days later, I was officially diagnosed with RRMS.

I had a further MRI to see how it was progressing and which medication would be most appropriate. There were new and active lesions but some of the existing lesions were shrinking. My neurologist recommended Tecfidera. I’ve had the blood and urine tests and Tecfidera has been prescribed. I’m just waiting to hear from the courier to organise delivery of my first set of tablets.

Since my diagnosis, I’ve been suffering from detachment. I can perceive everything but it’s like there’s a filter of unreality. My neurologist and nurse both said this is common and is related to the trauma of the diagnosis, like someone suffering from PTSD. It’s been four months now and I’m tired of not being able to feel properly. How long has it taken other people to feel ‘normal’ again (or at least whatever your new ‘normal’ might feel like)?

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californiadreamin
1 year ago

My wife had numbness started from her legs around the same time as you. A few weeks earlier she had a period where she had some cognitive difficulty remembering things etc that was odd for her. It probably lasted a few weeks looking back on it, but it was only in November as the tingling went up and the MRI’s were done did we realize what was going on. So that only lasted a few weeks. She started Tec in late November. It went great for the first 10 days and then took a horrible turn worse. We stopped it until the end of the year and started again in Janurary and tried some different strategies to ramp up to full dose. She is doing great on it at this point. Hope that helps.


potter
1 year ago

You have a new normal eventually, but it could take a while, MS symptoms change at a moments notice. Your paddling through life pretty well and suddenly you have a leak in your boat. While your fixing it another leak pops up your suddenly playing catch 22 and then you realize that you have a new normal. It could be months or years and your in that same boat and it starts leaking again and you realize that you have a new normal. I have been on Tecfidera for three years and it took awhile for me to not have any stomach upset. I did learn that I had to take my pill in the middle of the meal and started taking a good probiotic daily. I stayed away from spicy foods for the first three months. I don’t notice them at all now after I take one, it was worth the effort, I took Rebif shots for 5 years and always felt like I was getting the flu. Good Luck Potter


stumbler
1 year ago

@redrighthand , a diagnosis of MS sets us on an unexpected journey. It’s a journey similar to mourning the loss of a close relative, as you will be trying to deal with the loss of your healthy self.

This journey is an emotional rollercoaster, which takes you from diagnosis through to acceptance of that diagnosis. This process can take up to a year or longer.

So, be gentle with yourself as you understand what this diagnosis may mean to you. Embark upon a learning curve to understand about MS. Then you will see that it can be a slight inconvenience and not the taboo condition it once was.

We’re here for any questions. I’m sure there will be many. 😉


stephz
1 year ago

The hardest thing is – don’t compare….That’s like asking how long after a loss should you stop grieving? It’s annoying and it will be an up & down journey. I was diagnosed in Nov 16…after a really bad 2 weeks in early Feb I decided to try counselling – one of the best decisions I made so far. It’s a whole different experience talking to someone who know nothing or very little about MS but knows to pinpoint feelings and underlying feelings. I’m not from a big emotional family and these sessions have really helped to sort out my emotional relationship with MS…I have been reading a lot of mental health blogs and been adopting some of their strategies e.g. Turn your “I’m sorry..” into “Thank you!” The example the blog gave was instead of saying “I’m sorry I’m late” say “Thank you for waiting for me” – I adopted this with other people like my partner but also with myself…2 weeks ago I went on a field trip with work and it was too much and I was off with fatigue for 2 days not poperly able to work for a week…the first day I was like I’m so stupid why did I do this…etc….on the 2nd day I changed that to: I’m taki g care of myself until I’m better no the next time I will plan better…

Not sure if this will help but I hope you find your method….


cameron
1 year ago

I think it will start to change once you begin treatment. As soon as you take your first tablet, you have a reference point: i.e. your first nurse/neuro review to see how you’re doing on those tablets. When that goes OK, hopefully, you’ll begin to see the road map for life ahead. At that point, too, you’ll likely be asking your nurse/neuro lots of questions because as you begin to take charge of your condition things will occur to you and you’ll want more info and maybe some reassurance that you’re doing the right thing – that basically you’re OK! That’s the second reference point – a reliable indicator given by someone medical that things are moving in the right direction. Tell us how you get on. xx


sandwich
1 year ago

I hate the term “journey” personally. Journey to what I’ve never been sure.

Just take it a day at a time @redrighthand. It took me a long time to regain my pre diagnosis equilibrium but I did in the end. In fact I’m more content now than I was pre-diagnosis. It sounds like you were diagnosed quite quickly and unexpectedly too.


leena
1 year ago

I was diagnosed in 2013 and have never felt ‘normal’ since then. I don’t want to scare you, but you might start getting sensations and weird pains which only you can understand and feel. And MS is different for every MSer.
People who don’t have MS will not understand what you are feeling. The positive outcome is that it has changed my perspective of life and I am now more patient and forgiving.


Anonymous
1 year ago

Hi, @redrighthand it is scary and the best advice I can give after having ms for 11 years is to learn to understand your body, listen to yourself and don’t be pressured into anything and go with your gut instinct about managing the disease. It is manageable for a lot of people and like @sandwich I feel more content now. I like my ‘journey’. All the best and stay positive 👍🏻


redrighthand
1 year ago

Thank you for all of the replies and support. I’m very fortunate to have made a full recovery from the relapses I’ve had. I don’t currently have any ongoing or recurring disabilities or sensations. It’s just the detachment. While I accept my diagnosis, I think I’m still struggling to come to terms with it. The detachment seems to vary with my mood. On good days it’s bearable, on bad days everything feels alien.

Hopefully, you’re right @cameron. Maybe starting my medication will help me to feel some degree of control over the rest of my life.

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