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Is this the start of my MS journey?

In October 2017 I began to have pins and needles in my feet! My feet felt like they were on fire and like my shoes were crushing them! I happened to be on holiday when it was at its worst and was unable to walk for long distances, and had to keep taking my shoes and socks off due to compression/burning feeling however this did not help! The severe feelings calmed down after a week but the pins and needles remained and after a few weeks slowly moved up my legs! It was at this point I realised something was seriously not right! I had started a new job and couldn’t take the time to see my GP so called NHS 111 who sent me to A and E! I think they were being over cautious as I only saw a hospital GP who then referred me back to my local GP for blood tests! All tests came back clear or any deficiencies and I was referred to a neurologist. A couple of months later I had my first appointment with the consultant where lots of physical examinations were done and the consultant explained how these symptoms were very common in people and unlikely to be due to any certain conditions! I was sent for an MRI to rule out anything but I received a letter from the consultant saying the symptoms were unlikely to be anything conclusive. I started to get other symptoms, the feeling like my elbow was wet, incredible sensitive skin to heat and clothing, both of which have now gone, some bladder incontinence, and most recently an awful pins and needles sensation in my lower back that shoots down to my legs when I lean my head or body down but I remained positive and kept thinking how the neurologist had said these symptoms were very common and a diagnosis of anything was very unlikely.

5 weeks after the scan I went back to the consultant for my results and was incredibly surprised for him to show me my scans of my brain and spine and point out numerous lesions on my brain and even more so on my spine. He said this was symptomatic of MS and was pretty conclusive. I was sent for blood tests to rule out any other auto immune diseases but he explained this was very unlikely and that the scans were pretty conclusive of MS. He said I would be given an MS nurse and referred to a specialist at another hospital.

So here I am, waiting for more appointments and I suppose awaiting an official diagnosis! He mentioned the different drugs and said the specialist would look at what is appropriate for me. In peoples experience, should I assume a diagnosis of MS is coming? How long can I expect to wait for the appointments with the specialist and nurse?

Unfortunately due to starting a new job at the same time all of this began, and having had to have some time off to have a tonsillectomy, and for quite a lot of appointments, I have had to make work fully aware of my current situation and that I am awaiting what looks like a diagnosis of MS. I am currently in my extended probation, this is due to having time off for the tonsillectomy and nothing to do with my performance I should add. However my dr has now signed me off work for a few weeks due to depression and symptoms. I have had an open conversation with my employer and I am looking to only take a few days off instead of the full four weeks. I do not want to lose my job! I should add I am only 27 and looking to buy a house soon! My manager is very understanding as his mom was diagnosed with motor neurones last year but at the same time I appreciate it is a business and I am cautious that my absence may cause issues with my job! Everything feels incredibly overwhelming! I am depressed, worried about work, worried about the symptoms I have now, what the future holds and cannot stop seeing the scans in my head, particularly the spine which was littered with lesions.

This is an incredibly long post so if anyone reads this, thank you so much! What were your primary experiences? Does my story so far resonate with yours in any way? How long before my appointments come through? Experiences with work? How to ease my symptoms whilst waiting for drugs? Anything you can comment on would be so much appreciated!

Hi, Your neurologist has given you a working diagnosis of MS. This should go a long way in giving you clearer picture of where you stand. Some people remain stuck in limbo for moths or years before getting their answers. Every case of MS is as unique as we are, like our fingerprints, so, as far as your MS journey is concerned you will have to navigate it yourself. However, you will have a lot of help on the way. The neuro guy will hook you up with MS nurse. These specialist nurses are amazing. My GP told me that he just does what my MS nurse says. They will advise on medications, appliances, physiotherapy; anything that will make your life easier. As you have been referred to a MS specialist you’ll also get the benefit of his, or her, clinical expertise. The field of neurology is a fast paced and ever changing so they need to be on the ball. Finally, you have the resource of this Forum. I’ve been coming here for over three years now and the knowledge, experience and empathy that people here possess never fails to surprise me. I can’t tell you how long it will take for your appointments to come up. I can’t help you cope with your work commitments, but I can welcome you to “The Club That Nobody Wants To Join” and all the marvellous people who come here and are willing to lend a sympathetic ear to whatever you want to say. I’ll see you around. Best wishes, Anthony

Thank you so much Anthony! To know there are other people experiencing similar things is, although such a shame, rather comforting! Hopefully time will help give me some more answers even if many questions remain unknown! Xxx

Hello

Oh blimey, that’s happened fast. And what a massive turn around for the neurologist to say, ‘oh that’s normal’, then weeks later, ‘you have lots of lesions in your brain and spine, it’s MS!’

Yes, I suspect you do in fact have MS. And that this is the start of the journey. It would be quite surprising at this point for the MS specialist to now say, ‘oops, the other guy was wrong!’

As Anthony said, other people’s diagnosis stories can be interesting, but ultimately your MS will be probably different to everyone else’s. Mine will differ immensely as I’ve had MS for 21 years and the world of MS has completely altered.

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-sclerosis 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 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/ms-decisions/decision-aid 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.

I can’t help with work either. It’s been a few years since I’ve had that pleasure.

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

Thank you so much Sue! For not only reading my post but replying! It’s a frightening time, I only had my first symptoms in October and already have countless issues.Trying to take each day as it comes!