Diagnosis finally

New diagnosis and before diagnosis
1

Hi guys

I was told in 2017 I had MS after getting hit with optic neuritis. I had it quite bad and after many eye clinic appointments I had an MRI scan which confirmed I had lesions on my brain. My neurologist wasn’t keen to diagnose me straight away with MS. I was suffering with constant pins and needles including in my face and head but he still held off confirming it was definitely MS.
Anyway yearly MRI scans showed a new lesion each time and now after my latest showing more progression he has said I have relapsing remitting MS. Plus I’ve had other symptoms such as hip pain (I’m 38 and before this I was in good health) my good eye started with what felt like ON again and I’ve had shooting pains down one side of my face.

So four years later I’m now starting medication and have just had my bloods taken (10 tubes full) I’ve been told once the results are back I will start taking Tecfidera
They have sent me a booklet about DMTs and I’m not going to lie I’m actually really nervous/scared to start meds now.
The side effects don’t sound great (I know you get this with all meds but I’m worried it will affect my job)
I’m also worried on how this will affect my social life. I know that’s probably the least of my worries but after a hard week at work I like to socialise with my friends and have a few drinks.

Even though this has been a long process for me the reality has only just kicked in. I’ve managed the relapses I’ve had up until now and even worked through them when I’ve been in pain. Mostly because I’ve not wanted people to see me as a weak link at work. That might sound crazy but I love my job and don’t want to ever feel like someone could easily replace me because of my health.

Sorry for the essay, I’ve not really got anyone to turn to who would understand my worries and anxiety.
It would be good to hear how you have managed and come to terms with your diagnosis. Also how starting medication affected you to begin with.

Kirsty

2

Hi I know MS can be scary but perhaps my story might make you feel more positive. My MS journey began way back in 1972 with a bout of optic neuritis. I’d recently married and as MS wasn’t mentioned life went on as normal. It was only after my son was born and I’d lost the sight in one eye (only temporarily) that my doctor thought I should see a hospital consultant. I had to travel to Nottingham from my village only to be told it was probably MS, he couldn’t give me a prognosis an basically that was that. So I went back to my husband and two children who were both under 2 years old and got on with my life. I know you must be feeling anxious about all sorts of things right now. Okay I have finally succumbed to MS but 1972 to 2021 is a good innings and although I am dependant on hoists, carers, etc I’m still enjoying a good life out and about in the village so do try and keep on the bright side - we’re all here for you. Essis X

2 Likes
3

Hello Kirsty

Welcome to the forum. I know it’s not somewhere you ever wanted to feel welcome, but honestly, knowing other people who suffer / have experience of what you’re going through, should help.

It seems ridiculous in today’s world that the neurologist couldn’t / didn’t diagnose you earlier and get you started on disease modifying drugs (DMDs) that could have prevented relapses. But at least you have been diagnosed now. Not what you want, but probably what you need.

Strangely, my experience was somewhat similar, only some years earlier. I had a relapse, was tested (MRI, Lumbar Puncture and Visual Evoked Potential tests) and was told not just ‘we can’t diagnose now’, but unequivocally ‘it’s not MS’ (#big fat fib). 5 years went by, relapses came and went and eventually I went back to the neurologist and was asked ‘what do you think it is?’ When I replied MS, the neuro said ‘yes, I think so too’!

The difference between you and I is the sheer number of DMDs now available. When I was first offered a DMD, I had the choice of 4, and 3 of them were beta interferon. You have the option of so many drugs.

Tecfidera is a good drug. It has the potential to reduce the number and severity of relapses by about 50%. There are always side effects from any drug. The effects of Tecfidera aren’t too bad really. You just need to think about how to take it.

The usual method of prescribing is to give you one week on half doses morning and evening, then go straight into full doses from week 2 onwards. What you could ask for is a slower start, ask for one half dose per day on week one, two half doses on week 2, one half and one full dose on week 3 and then up to the full doses morning and evening on week 4. This way you tend to avoid any gastric upsets (not that everyone gets any kind of upset stomach).

The other thing is to make sure you take the drug with food. The idea is to sandwich the pills with food. So you try to eat a stomach coating breakfast and divide it in two, taking the pill in the middle. It’s often suggested that you have something like porridge, then pill, then toast. This is really off putting to many people (especially in summer!). If you like peanut butter, that does just as good a job for stomach protection. Just try eating toast in two halves with the pill between.

People who’ve taken Tecfidera often find that the evening dose is much easier, it matters less what you eat and when you take the drug. Which obviously makes life so much easier if you’re out for post work drinks. You can often manage to just take the dose before bed and have no ill effects. Or eat crisps!!

Personally, I didn’t have trouble with taking Tecfidera. Had no stomach issues at all. The problem I had was depleted lymphocytes. This happens to quite a lot of people. It’s not a side effect which you know about, it just shows up in blood tests. Lymphocytes are a type of white blood cell which fight against viruses. So when your level of lymphocytes goes down and stays down (the expectation is that they always go down to begin with but they should come back to a normal level) you have to stop the drug.

With luck, you’ll get on OK with the drug and blood count will rebound and you’ll get no further relapses. (Happy days!) Thats what’s expected and the reason why you take the drug.

Your work shouldn’t be affected by the Tecfidera. Just try to start slowly (check with your MS nurse and/or the drug delivery company), eat breakfast, and don’t worry about the evening dose.

Best of luck

Sue

1 Like
4

Hi sue

Thank you this has most definitely put my mind at ease over the medication now. I did the worst thing possible and Googled the medication when I was sent my letter and booklet. I read how it had a huge affect on some people and instantly panicked.

Reading your reply has made me so much calmer about starting them. I will definitely do as you suggested over sandwiching the tablets. That will be tricky in a morning as I don’t normally eat breakfast but I will try and get in the habit now before I’m called in to start them.

I also had the lumbar puncture which came back normal and he wanted me to have another one earlier this year but I refused. The headaches from the first one were horrendous and I couldn’t go through that again. The mri results and new symptoms/relapses went in my favour though and he said he had enough evidence for me not to have it.

I definitely need to stop overthinking it all and I think that’s just because I’ve been in denial for so long. Even though he wasn’t willing to confirm my diagnosis sooner he did tell my GP that I have MS a few years ago. They couldn’t understand why I wasn’t put on medication then either. It did enable me to get yearly flu jabs though and the covid vaccine sooner than I should of got it. So least my gp tried to look after me as best they could on this journey.
I have 12 weekly b12 injections too as I have a deficiency and they always checked in to make sure I was ok. Whenever I had something new going on they rang my neurologist straight away to get it checked.

Thank you so much for your advice and instantly making me feel more calmer about it all. I really appreciate it x

5

Thank you Essie, I think when you have no one else who can relate the anxiety hits you more. It’s good to hear your still enjoying life that definitely puts my mind at ease. I think I’m just overthinking everything right now and that’s probably because I’ve been in denial for so long with my neurologist holding off on the diagnosis even though he has discussed it with me previously.
Thank you for taking the time to read and reply x

6

Hi Kirsty

Glad my message helped. It’s great that you have supportive GPs, if your neurologist isn’t that brilliant, what you need is a good GP.

If you Google stuff, you’re going to scare yourself stupid. If you have a general worry, ask us on here, there’s always someone who has experience that can help. But then run it past your GP. They may not have too much knowledge about MS drugs (have a look at MS Decisions aid | MS Trust ) but about anything else, they are the experts. Try to investigate anything you read - and that goes for someone like me - amateur information is worse than useless. So trust this site (home page plus ‘about MS’) or the MS Trust (plus any word about which you want info on a web search).

Best of luck Kirsty. When you have a wobble or a scare, or just want to chat to someone who knows what you’re feeling, come back here.

Sue

1 Like
7

Yes thank you, it’s definitely a lesson learnt not to Google. I’m so glad I posted on here as I was reluctant too at first.
Now I feel like a huge weight has been lifted.

You have not only given me good advice on how to take the medication to help with side effects but also given me some insight on to what questions I want to ask the MS nurse over the dosage.

Thank you so much, I have a feeling I will sleep much better tonight now I’ve got less consuming my mind.

Kirsty x