Forum

A Proper Diagnosis and DMD Decisions

I have finally seen a MS Neurologist and I have been formally diagnosed with RRMS.

It was a bit of a shock as although the last neurologist said it might be MS, I think I’d been trying to convince myself it wasn’t. We didn’t discuss many symptoms, but he said my likely first sign was back when I was 19 (I thought it was just a funny thing that I felt a buzzing sensation when I dropped my hea to my chest, who knew?) and it had been pretty much silently ticking along until my face went numb last year.

He suggested that I start on Tecfidera or Tysabri, but I’m struggling finding much information or patient experiences on them.

He explained side effects associated with them, but surely there have to be more than that small handful? I’m a “read the full PIL” whenever I take any kind of medication/painkiller/allergy tablets kind of person so the little I can find is probably worrying me more than the side effects listed. I know everyone is different, but does anyone have any experience with either of these?

Also, My GP. What happens there? I haven’t been to my GP in over a year since I was referred for what we thought was a small lipoma pressing on a nerve (surprise!) and when I thought I was getting a water infection in June it was almost two weeks to get an appointment and I ended up cancelling the appointment because it cleared up. Do I have to tell my GP? Does the hospital? Will I still have to wait for so long for appointments? If I start one of these treatments and have a lower white cell count, then knowing me I’ll get everything going.

I’m just so confused and struggling to take things in properly. Help? Or talk and distract me?

I am going through same nightmare, gp who wasn’t aware I had finally been diagnosed, read my notes whilst I sat there in front of her and then told me she “wasn’t very aware of ms” no help there then! I have yet to speak to any ms nurse since diagnosis in June. Neuro told me aubagio was the dmd she would advise, handed me a leaflet and that was as much info as I have got. Stick to this site it’s the only place you get any real help, advice and understanding.

hi girlwhoreads

i’ve been on tecfidera for about 3 or 4 years.

it is easy to take (just a pill) but you must take it after food.

if you don’t you risk getting a dicky tum and maybe vomiting.

the other side effect of flushing can be avoiding by taking an anti histamine and a paracetamol.

i have no experience of tysabri although tecfidera is made by the same pharmaceutical company.

i haven’t had any infections whilst on tec.

i appreciate the 3 monthly check ups with my ms nurse.

the hospital usually write to the GP.

you should ask to be copied in to these letters, they are useful for making a claim for PIP.

i understand it’s a big worry but don’t over think things.

anothergirlwhoreads

x

Hello reading girl

I’m sorry to hear your diagnosis. The neurologist will write to your GP (and copy you in to the letter) so put that from your mind.

It’s a real bugger being diagnosed with MS. And it does play havoc with your emotions and brain. It’s a bit like, ‘how could this happen to me?’ or ‘what the F!’ Or ‘heeelllppp!’

In terms of which disease modifying drug to go for, it’s a hell of a thing to be told you can have A or B. Choose. When you know very little about MS, or DMDs or what your future holds. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid That might at least give you a pile of things to read to stop you worrying to move avail.

It’s basically a question of what benefits you the most for the least cost, in terms of how much it affects you and your life. If you cut it down to a biggest gains, then Tysabri wins. But it does mean you have to have the drug administered by infusion, so you spend about 3 hours in hospital every 4 weeks. Then there’s the fear of PML, a nasty brain disease that you could contract while on Tysabri. But only if you test positive for antibodies for a virus known as JCV. And even then, there is no risk for at least two years. Meanwhile, Tecfidera is an oral, twice a day drug. It is a bit less effective than Tysabri (50% relapse reduction versus 70%). But some people find side effects a difficult thing to live with. It has to be taken with lots of food. And can cause some gastric discomfort (some people would find that a massive simplification, others have no trouble).

Whatever you decide to do, it’s not the end of the world if the drug either doesn’t suit you, or if you change your mind. Generally speaking if those two drugs have been offered to you, then they will still be available if you opt for one then want to switch. Usually neurologists want you to stick with a drug for at least 6 months unless you have side effects that mean you need to stop sooner.

Meamwhile, take some time to take the diagnosis in. Don’t panic that you’ll be massively disabled in a short time. The DMDs are designed to cut the number of relapses and therefore to reduce the nerve damage which leads to disability.

So talk about it with your family and / or friends, think about what will suit your lifestyle best.

And good luck with it.

Sue

Thank you so much all of you! I now have a huge list of questions for when I go back next week, and I think I’m going to start on tecfidera and see how that goes, as it would fit best for me. I have a needle phobia so the fewer the better, I don’t think I could physically take an infusion without passing out.