Hi, I am brand new here. I have received my MRI results on Monday evening stating I have MS. I started having pins and needles on my left side over 8 years ago and then last year my right side started too. I learned to grip harder with my left hand and carried on with living with my symptoms as I was too busy with my life to act upon them (separation then divorce, being a single mum to under 5s then). Getting symptoms in my right side was the one that took me to the GP. I had (very painful) nerve conduction test, vitamin B12 level blood tests and ‘finally’ got to the MRI.
It is a shock and on one hand I feel ever so sorry for myself. On the other hand I think if it doesn’t get much worse than I could live with this. Am I in denial?
Also, on Friday I tested positive for Covid and I feel rather poorly. Totally congested and have no energy. Shame I am not on the system yet as I would have loved some anti viral medication. I suffered a lot with the first two rounds of Covids I’ve had plus reacted badly to the 1st vaccination and to the booster.
I am looking forward to seeing a specialist I am being referred to. I stopped my calcium and magnesium supplements on Tuesday (I suffer with muscle cramps) as I read somewhere it is not advisable for MS.
Thank you for reading this and wishing all the best for everyone!
Anett
I’ve been taking calcium and magnesium for the last 5 years with no apparent problems.
Hi Anett, and sorry to say, welcome…
You’re going through what we all had to face when it was our turn, so no apology needed for feeling bummed out.
Don’t know so much about calcium but magnesium is regarded as useful for MS folk, as are vitamins D and B12 in high doses. For the cramps, get a prescription for Baclofen: start slowly and build up to 30mg/day although some can tolerate more.
Graeme
Thank you very much Graeme!
I think I will be going in with a notepad full of items when I see the MS specialist.
Thank you very much, I appreciate your response. I think I should carry on too until I am advised otherwise.
I am sorry that you’re having a rotten time at the moment and hope that you are now on the mend from Covid.
I’m not clear whether it’s just your GP’s opinion that you have MS or whether you have seen a hospital specialist who had diagnosed you formally? (Sorry if I’ve just got the wrong end of the stick there.) If the former, there may be more diagnostic hoops to jump through before you officially have MS. The hospital specialist is also your gateway to disease modifying treatments that can keep future MS activity to a minimum, which is the objective for RRMS. As you say, the sooner you establish that relationship, the better.
As for being in denial, well, never mind if you are. An MS dx isn’t the end of the world, but over-thinking isn’t always terribly helpful. Over the past 20+ years, I have found that dealing with things as they come along and hoping for the best is a good strategy.
Hello, thank you for your reply. To answer your question, I have been diagnosed by a neurologist consultant at the hospital and I am waiting for my appointment with the MS specialist.
And thank you, my covid is getting better. I was prescribed Paxlovid so I shouldn’t have the ear infection again.
I really like your strategy. I hope I can adopt it too.
Thank you. I should have added that my hoping-for-best strategy has also involved being on the most effective disease-modifying treatment available to me!
I am glad that you’re feeling a bit better.
Hi Anett, just got my diagnosis letter, wrote a hello note on here but didn’t make much sense. like you I have got on with life as symptoms were mild since I was 32 (first relapse of tingling) I am now 57 and things have got worse hence seeking some help. I now am waiting for follow up appointment and feeling sorry for myself, we have things in common don’t we?
T
Hi Tina,
I am sorry to hear about your diagnosis. It is a bit of a downer indeed.
Are you also in the UK? The doctors are not in a huge rush to see me (apart from the MS nurse who visited me months ago), my first appointment with the consultant is only coming up next week.
All I can say is that 6 months passed since my diagnosis and I am not so stunned by the bad news anymore. I am learning to live with the thought.
Wishing you all the best on this journey.
Hi Anett, yes in the UK, didn’t sleep and have got terrible pins and needles this morning, thinking a pseudo? Hope so anyway. Good to talk to you, can’t believe no help still since you were diagnosed, not great😒 Thanks for replying, take care T
Hi Tina, I hope the terrible pins and needles eased up a bit by now.
I think the reason for me not getting appointments with the consultant earlier is because my remitting relapsing MS is not very active. One of the reasons for me not joining a live MS group with meetings is because I have heard of a few ladies suffering with it and they are affected much more.
I really hope you will be seen soon, especially if the worsened tingling has not gone away. I have contacted my ‘care team’ about a month ago when the tingling got worse in the souls of my feet. They made a decision of not starting stereoids. Since then the tingling went back to it’s ‘normal’, which is a relief.
For me it’s the uncertainty that gets me down, hence I contacted Steps for Wellbeing and I am being assessed soon. I need some strategies to help to accept this life long condition because on sad days I get rather low. Hoping for CBT rather than counselling. We’ll see…
All the best to you x
Hi Anett,
Thanks for your reply, still crazy pins and needles, but I have an appointment for June 20th not sure if that’s good or bad😕 so soon?
The uncertainty is horrendous I agree it makes you rethink everything in your life.
Anyway take care of you x
Hi Tina,
Oh no, still bad pins and needles? Would you consider calling your MS nurse to see what they think? June 20th is not bad but still far away…
Take care x
Hi Anett, I don’t have anyone I can talk to yet, only got my diagnosis 3 days ago. x
Hi Tina,
If you’ve have your diagnosis letter then I think you could email MS.Helpline@uhd.nhs.uk
because you must be on their system too. They’ve been lovely to answer my questions and concerns when I thought I was relapsing.
Anett x
Oh ok I am so new to this, thank you so much I will do that T