Struggling with symptoms but a month until appointment

New diagnosis and before diagnosis
1

Hello,

I’m 36 years old. Just over three years ago I had an MRI for a sinus problem, and as an incidental finding they found a number of lesions in my brain. Since I hadn’t had any neurological symptoms, they diagnosed me with Radiologically Isolated Syndrome and I’ve been kept under the neuro, but only had one telephone consultation since then. I’m constantly tired, I get a lot of pain and stiffness and brain fog- this was put down to fibromyalgia and I was happy with this and as I’ve been under a huge amount of stress, thought that was probably a cause too. I was kind of blase and have ignored loads of little symptoms and never thought they could be MS related. But in the last 6 weeks I’ve had really bad Lhermittes sign, popping sensations in my head, tightening in my chest and my left leg feels dead wonky and like it might give way. I called the neuro and they’ve booked me in for mid-November. These symptoms are driving me nuts. I’m working part time, I’m a single parent to 3 children under 9, I’m doing a Masters degree and my ex husband is a very difficult person. I have a lovely boyfriend and loads of support from friends and family, but as my symptoms are vague and I don’t have a diagnosis, it’s really hard to explain how much they’re affecting my life. I’m still not convinced it is MS, although I’m very pragmatic, so if it is then I’m fine with that as I did all my crying and coming to terms with it after the initial scan.
Sorry for the ramble, but does anyone have any tips on what I can do to ease the symptoms/explain them to people until I can see the neuro?
Have a lovely day all :slight_smile:

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I am sorry that you are having such a worrying time and I hope that you get to the bottom of what ails as soon as possible. If it does turn out to be MS, the chink of light is that the disease-modifying treatments that are available now can help you stay as well as possible for as long as possible and get on with your life with as little disruption as possible.

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Thank you for your reply. My aunt and a friend both have MS and both have relatively few symptoms, despite being over two decades past diagnosis for my aunt. So I know that, while a highly unpredictable disease that does affect some people severely, it’s not an automatic wheelchair or death sentence. It’s just the uncertainty that’s driving me nuts. As is not being able to say to work or uni that I’m having a flare of a diagnosed condition, so I feel a bit like a malingerer.

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