New - symptoms increasing since dx

Hi All,

Im new here, just finally diagnosed 8 weeks ago after about 14 years of issues on and off. Just after i got my diagnosis, I relapsed again (4th time in less than 2 years) and even though I am over the worst of the fatigue and walking issues, I have been getting severe electric shocks for the last couple of weeks in left arm/down ribs. This is in conjunction with numbness/itching/pain on right arm/chest/back. I have also had hypersensitive fingers/half of left hand for about 9 months which has not improved and I wear bandages on my fingers all the time as otherwise the pain is unbearable. I’m going to the doctors on Tuesday to see about gabapentin or such like. I am not on any DMDs at the moment as have been advised not to start on any until I start a family (which we are trying to do atm).

My work place have made life quite difficult for me so I don’t think the stress has been helping but hoping to go part time in next month or two - will be waiting about another 5 months for PIP assessment.

Just feeling quite down about the fact that this relapse doesn’t seem to be improving - just changing. Not sure if I should ask for steroid treatment at this stage or if they will say I am over the worst of it and see how the anti-convulsants work out. Tried amitriptyline last year and it did nothing for me.

Nice to hear from others in similar situation?

I would have said to ask about DMD’s, but as you’re trying for a baby that’s out of the question, probably be the same for many other drugs too. Having a chat with your neuro or MS nurse might be a good idea as you’re feeling down.

Sorry if I’m not being very helpful, sometimes we just have to ride it through…good luck

Rosina x

I’m newly diagnosed, I’ve had problems with numbness on July sept and end of October started current relapse, finally got some steroids just after Christmas and some improvement but today has been a really wobbly day! I had a couple glasses of wine last night and think that be the reason.

im seeing MS nurse on 4th feb to discuss medication.

Has your neuro mentioned Lemtrada (Alemtuzumab)? Its a first line induction therapy for active ms. Something to ask about maybe given you want to start a family and your ms sounds active.

That’s interesting - I wondered about asking for steroids but thought maybe as I was now getting better, I should prob leave it. Lemtrada was fleetingly mentioned but was implied this was a fall back treatment for advanced MS. Where DMDs had failed :confused: I’ll do some more research. Thanks x

Definitely do your research. Lemtrada is licenced for active RR and as first line treatment.

Some info can be found here Overview | Alemtuzumab for treating highly active relapsing remitting multiple sclerosis | Guidance | NICE

You could ask your neuro / trust for a copy of their DMT pathway plan.

The side effects sound quite scary - I’m sure I could get it if I asked for it but also unsure if this would be safe/detrimental in trying to get pregnant ?

I don’t think any DMT’s are recommended for use during pregnancy. Neither is Lemtrada during treatment or for a period after I belive. It does come with risks. All of them do and the more effective meds seem to carry the bigger risks unfortunately.

I guess it comes down to prioritising what you want right now - a baby or trying to get your MS under control. I don’t think there is a right /wrong answer, it comes down to what is most important to you.

Its a difficult position to be in and I’d follow your heart along with the advise from your neuro. Sounds like getting your nerve pain under control will really help.

Will add - it sounds like you’ve got a lot going on at the moment and hopefully your symptoms will calm down once life does!