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In the dark-recent diagnosis

I was training for a marathon when I went to the doctors about a weird tingling sensation that I was having in my thighs that came about when I bent my neck. I was sent to Physio. From there my concern was referred to neurology and an MRI was booked.

The results came back. After a series of MRI scans; one for my brain, I have lesions (size and amount unknown) and two scans of my spine (I have demyelination on my cervical spine-point unknown). On the 23rd of March this year I was diagnosed with MS. I was told over the phone. I was told I am suffering from L’hermitte’s phenomenon and tingling hands. which after a short bout of a cold has progressed to occasional loss of function in my arms and hands. I find that this would last for at least an hour or so. My diagnosis was prescribed a course of methyprednisolone 500mg for 5 days to ease the inflammation.

The pills were frighting as I have never felt so mentally altered, extremely flat and disconnected. It took me 5 days to take the pills and a further two weeks to get over them. They sadly didn’t seem to work for me as my hands are still tingling the L’hermitte’s is still there and my right hand occasional goes numb from the shoulder to my finger tips and contorts uncontrollably (this can last at least half and hour then a further hour to regain feeling).

I have not seen a single person since being diagnosed. No support, no clear understanding of what type of MS I have, no idea what to do to move myself out of this slump I am in. I am a single mother who split up with my partner of 10 years last year so I more that you can imagine- feel so alone.

All I was told in a letter is that I will be referred to an MS consultant. After phoning numerous teams to get some insight I have been told that my appointment will take place on the 12 of July.This seems like a very long time to leave someone once you have just told them that they have an incurable diseases. has anyone suffered this. I am so lost, in a state of limbo and I am exhausted. what happens now? Is that it?

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Hello

I’ve just copied the majority of what I’ve just written to the post above yours, since you are in very much the same situation as that poster. So here goes:

Steroids are an odd drug they are very strong so have a big effect on your system. They aren’t unfortunately always reliable, neither will their effect always be the same each time. So the fat that they’ve not had any effect this time doesn’t mean they will never work. It will just depend on how bad a relapse gets as to whether you choose to take them again.

When you see the specialist, s/he will most likely try to ascertain which kind of MS you have. In the first place, people are most often diagnosed with relapsing remitting (RRMS). Unless there is incontrovertible evidence that it is progressive from the outset. Have a look at https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-scl… This might fill in some of the gaps in your knowledge. There is a huge learning curve which you will gradually become familiar with over time.

In the meantime, we will do our damnedest to answer your questions. And believe me, there will be many.

Don’t expect to come to ‘terms’ with this diagnosis (once it’s definitely confirmed) overnight. You are likely to cover a whole range of feelings about it, from tearful upset, to furious rage, depression and utter refusal to accept it. I’m still furious. It wasn’t supposed to be part of my life.

I would expect your MS nurse (when you get one) will help massively. They tend to be worth their weight in cheese (so very valuable). One of the questions you are likely to face quite quickly is likely to be the selection of a disease modifying drug (DMD). These are designed to reduce relapses and the severity of relapses. You could familiarise yourself with the many on offer here: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/m… Assuming you are given a diagnosis of RRMS, you’ll be offered one of a selection of these. It won’t be a completely free decision, it depends on how active your MS is, plus what prescribing centres have been set up in your area, also what the neurologist prefers, and lastly your own choice. So it’s worth getting familiar with them in advance.

But, welcome to the forum, chances are you’ll be seeing a bit of us for a while, then perhaps less as you get your head round it and get started with a DMD and get on with your life. Use us as much or as little as you need.

Sue

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I really empathise with how you feel about the steroids. I felt rubbish while taking them and even worse for a couple of weeks after. For me it was the fact that they made me unable to sleep properly.

Everything with the nhs and ms seems to go in slow time.

Where I live there are not ‘ms’ neurologicists, so the neurologist leave prescribeing DMD to the ms nurse practitioner and talk of her as the expert.

contacting ‘pals’ speeded up my contact with the ms nurse, not face to face but email contact, I managed to find out what my DMD options were pre appointment so I could give my informed decision at my first appointment.

the most constructive, helpful thing I have experienced so far is a ‘neorolgical physio’. It feels good to have someone trying to work out the cause of issues & work with me to improve them.

You mentioned that you were training for a marathon, it must be challenging to not be able to ‘push’ your body at the moment. If you can cope with your limitations any exercise is good. I am not talking on the level you were. My ms nurse keeps on about finding something that I can cope with that raises the heart rate.

Cycling keeps being suggested to me.

Good luck.