Hello. New to group and Living in Limbo

HI everyone, I am new to this forum. My name is Emma, and I am 25. I am currently waiting for a formal diagnosis. I had an incident in October 2024, where I lost feeling in my left leg, it felt like being at the dentist, which over the next few days, spread up the left side of my body, and I ended up in A&E as I started to loose control of my hand. During that visit I saw a neurologist who arranged a MRI, however he said he wasn’t excepting to find anything. Whilst I was waiting for the MRI the numbness started to subside, however it has left me with numbers in my foot.

In December I had a MRI, and heard nothing until January when my neurologist was me asked to come in. During that appointment he explained the MRI showed 2 signs of inflammation, one in the area which controls sensation to the side of my body which went numb, and one in another area of my brain which didn’t seem to have caused me any effects, which was when he first mentioned MS, which was a complete shock as I know on-one with MS, and hadn’t even considered that is what it could be. Three weeks ago I had a lumper puncture, and last week I was informed it has come back positive, and my care has been transferred over to the part of the hospital, which specialises in MS, and I am now waiting for the appointment.

Since then I feel like I am living in complete limbo, which I am finding extremely difficult, and the stress of it all is starting to affect other elements of my life. I was just wondering if anyone has experienced this feeling of limbo, and has any coping strategies which may help?

Thanks
Emma

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Hi Emma,
Being in limbo is a very common experience in the initial stages so you’re not alone and among similar folks.

I’ve been in a three year journey myself and I’m still in limbo. I need yet another MRI to be done a year apart from my last one to subdiagnose PPMS. My neurologist already thinks it’s pp and I know it is but he’s got to follow criteria.

My coping strategy was initially to tell myself everything was ok and nothing had changed nor would it.
But then I would say silly things to my wife like saying I may just disappear one day. My biggest worry was to become a burden and have to rely on others.

My wife convinced me to attend counselling and it really helped.
In my area there is an amazing charity called Revive MS who provided the counseling for free.

It may be worth looking into?

All the best.

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Emma, Limbo is another aspect of your “new normal” as for coping strategies, this depends on many things. In my 30+ years of MS experience I would say that one of my better strategies is to live in the moment, deal with what you can. The “unknown” future has a different meaning to someone dealing with a chronic (variable) condition, but try not to worry about long term stuff. This is easier said than done, but I set myself only short and some medium term goals or targets. It is also important to be able to communicate your fears and plans with someone you trust and who listens.
Plus whilst MS (or other illness) is a big part of your life, it is only a fragment of who you are so try to avoid it becoming an all consuming “hobby / thing” I will stop wittering and wish you and your family all the best.
Mick

PS I forgot to say that do not be afraid to make a fuss if scary stuff happens. Your professional team need to know ASAP if there is something that is a big problem which might be helped.

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Many of us have had a spell of time when everyone (us included) has a good idea what the problem is, but it isn’t formal yet.

I remember the strange feeling of knowing but not knowing. In a sense, you can’t start to get your head around it until it’s certain (well, I couldn’t). But on the other hand, the weird time of knowing but not knowing is all part of coming to terms, or that how it felt to me at the time and, looking back, it still does. It isn’t a comfortable feeling, I know. The one crumb of comfort for me was that when the formal diagnosis did come. It was no surprise.