Hello everyone, I just got told last night by the neurologist that I have MS. I don’t know what sort yet. I have a numb left hand and part of my right hand is numb. My dad has had benign MS for years and it is his legs that are the problem. I know this may seem stupid but I am terrified my arms are going to be paralysed. I see the neurologist again in a month for blood tests and a lumbar puncture. He said there were several abnormalities in my brain and showed me the MRI pictures - which I wish he hadn’t. I am just terrified of what is going to happen to me now.
Sorry about your bad news. One my my first symptoms was a loss of strength in the left hand. I remember sitting at the dinner table and two things happened: first I calmly set down knife and fork because the left hand couldn’t manage a fork and started eating my dinner with fork-in-right-hand only. Then, with no warning whatsoever, I collapsed in a howling, snivelling mess. So yes, I know that feeling.
The left hand business righted itself over time. I haven’t been as lucky with some subsequent hand-troubles, but in the sixteen or so years between now and then I haven’t ever had any further trouble eating my dinner.
Hang on in there. Naturally, you will be thinking the worst at the moment - why wouldn’t you? I did too. And I’m not pretending that MS is a bed of roses because it isn’t. But I can tell you that you will probably find a way to deal with whatever comes along and make a good life for yourself because that is what we do. Don’t despair.
Alison
Hi Alison, thank you for your reply. At the moment I am going between disbelief , thinking they have made a mistake when I know they haven’t and hysterics.
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Being terrified is very normal and a reasonable response to this potentially major change in your health. The longer that one “deals” with this stuff, the terror reduces and it is possible to become relatively comfortable with a new “normal” . I have had about 4 or 5 really scary times (which might seem like 4 too many! ) but that has been over 25 years, during which time I have had many many more totally brilliant times. It is easy to say try not to speculate, one of the benefits to me of my MS is I am much better at living in the moment and appreciating what I have rather than worrying about what I have lost or indeed what I might lose in the future.
I wish you all the best.
Mick
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Hi Mick, thank you for your reply. I have been a lot calmer today - just about three bouts of hysterics. I keep telling myself I could have something much worse . It is the unknown that is scaring me so much I think . Maura
Maura , it is all relative and on some days I think of all the people that I know who would bite their own arm off to be as healthy and mobile as me, but on other days I am super envious of relatives in their 80s who have much better control of their bodies than I ever will have. In my experience you should direct as much of your energy at positive stuff and don’t waste valuable resources on stuff you can not change. There is a place for anger and worry or hysteria , just make sure you control it and move on as swiftly as you can.
Mick
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These are very calming words and although they were posed in 2016, they are timeless. I am a lot older than many of those who have posed here but I have just been diagnosed too and terrified doesn’t do the feeling justice, even though I don’t feel I have the right to be making such a fuss as I am old and my symptoms have so far retreated on each relapse. More than anything I am frightened of losing my mind and not being me anymore. This post is therefore really gratefully read. Thank you T
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I am glad that you a little comforted by this old post. Being terrified is completely reasonable. New symptoms and the unknown are very scary. There is no value in comparing how you feel with how others feel. In my opinion we each have to deal with our own issues even when they change so quickly. I hope you feel less terrified soon. Save your energy for dealing with the day to day realities. All the best
Mick
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