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Lost in Limbo

Hi all i’m new to this site today.

I’m looking for advice from people on how to deal with the sheer sense of being in limbo whilst waiting for diagnosis.

I went to my doctors at the beginning of the month and have been referred to and seen a neurologist at an urgent clinic. The doctor managed to get this as both my father and older brother both have MS and my symptoms seem to match too.

The neurologist seemed quite blase about it all and despite me mentioning how i’m struggling day to day and being off sick from my job (police) He just said if i feel up to it go back to work if not don’t. no offer of support or guidance on how to cope with what is a frustrating feeling.

four week wait now for my MRI scan appointment and i’m going completely bonkers sat at home with little or no energy to do anything.

anyone got any advice to help me from going completely insane?

Hi,

all I can say and please don’t shout when I say this ‘but go with the flow of everything’ otherwise you will drive yourself into despair and try to make the best of the time off. If you are lucky enough to get paid whilst you are off like I was intially then it gives you chance to take the time and change things if so desired and to prepare for any short term or long term changes needed.

You have made a good start by introducing yourself to this forum, everything you have been through or are about to go through, there will be somebody on here who will have either gone through or are presently going through it as you write. You will find this forum both helpful and supportive, good luck and take care on your own journey.

Catherine xx

Hi, welcome! - Though it’s a situation nobody wants to be in.

Yes neurologists often seem blasé - I guess not getting emotionally involved and getting through the work load. But in the end, it does boil down to, if you feel up to it, go back to work, if not, don’t. You are justified either way but don’t push your self - be kind to your self.

Jon

Thanks Catherine and Jon,

I suppose i just need to practice having a little patience, which for me is hard to be honest!!. it’s just hit me how little i can do compared to what i was like before. It wouldn’t be as bad if i’d have been able to enjoy the sun we’ve had recently but that just sets it off more!. Yes i’m lucky enough to be paid whilst i’m off sick so i shouldn’t complain too much either.

Jon, i’d love to be back at work as it’s the best job in the world in my eyes, however if i’m realistic i couldn’t even hold an office post at the moment as concentrating on computers tires me just as much as physical excercise…

Mick

Yes it’s hard accepting hat you can’t do things. Even when when in a period of no energy I sometimes remember something I used to want to do and miss it.

Jon

Mick, i am new to the forum (yesterday) and i can appreciate your situation. Like you i am an active individual and it was only the 15th June that i cycled 74 miles. The though of going on a bike at the current time horrifies me. I am a reluctant ‘sit at home and do very little’ sort of person and this has been the case for me for a very long time. Even on holidays i climb a mountain, scuba dive etc.

However this is my third week off work and i am not ready to go back at the current time (social worker) for physical and emotional reasons. I am waiting for the neuro appointment but would expect myself to be back at work before i get it.

I find not being able to do anything very frustrating. I have read many of the comments on here and they all stress the point of being patient in a very stressful situation. I guess we need to focus on things that we can change in life and the neuro appoitment is not one of those things. so we have to resign ourself to reading, and day time TV (never!!).

Yvette

Honestly, and I am the first one to admit that this may be a really unhealthy and stupid way to cope: denial, denial, denial. I figure that as long as no medical professional seems to judge my situation as severe enough to actually do something about it, it may not actually BE that severe. Even if it is THAT severe, nobody knows. I’m sure there will be plenty of time to worry once I’m actually diagnosed.

However, I am in the fortunate position to be able to work from home, so that keeps me distracted. But there may be plenty of exercise you can do at home. There also have been wonderful TV series in the past few years, plenty of books and so on. I’d also suggest (if your symptoms allow) going outside a lot: cinema, pub (I’m obviously not suggesting getting pissed every night, I don’t even seem to be able to drink much right now, but as long as you’re not on meds that prevent you from drinking or even diagnosed with a disease, enjoy it - like I said, I’m the first one to admit denial may be stupid. It’s really more about a change of scenery than anything else), short walks (as much as symptoms allow).

Best,

MJ

Yvette, Yes you sound to be very much in the same situation as me. I’d just got used to being an active person after being very much inactive (ten years ago I was 20 and half stone!!). Running and cycling were my hobbies after my previous hobby (special constable) turned into my main profession. Changing things has been a quick learning curve, me not being able to plan things as I never know what I’ll be like from day to day but like you so frustrating. I have a brand new bike on a cycle to work scheme that I haven’t ridden for the twos this I’ve owned it because of this illness and everytime I go into my room it stares at me begging me to ride it!! :frowning: Patience is slowly coming to me after four weeks off now and I’m just hoping I can go back to work in some fashion before too long although how I feel currently it won’t be any time soon I hope your neuro appointment comes quickly for you, I was lucky that my GP got me into an acute clinic because of my family already having two members with MS so I hope yours doesn’t take much longer