Forum

It’s all hit home...

Hello all, I’m so glad to have found this forum!

Recently diagnosed following a few months of debilitating double vision and nystagmus (which have now gone away). My brain MRI showed new and old lesions and inflammation. Last week I had a lumbar puncture, spine MRI and blood tests but my neurologist said these won’t change the diagnosis, more that the results will be used as a baseline for the future. I see the MS team for the first time in June.

I was absolutely fine about it until this morning when I had to call in sick to work as I’m having such bad headaches following the lumbar puncture. I spent all weekend in bed missing time with my daughter who is too young to understand what’s going on but old enough to be sad that I can’t play with her. My husband has been utterly amazing but is shattered as he’s had to do everything. I’m in a new job which I love but really worried about the amount of time I have taken off for appointments and now today. My boss knows and has been very supportive, but I’m still worried that I might not make it through my probation if my absence levels continue. If that happens we are totally screwed as my husband doesn’t earn anywhere near enough to support us.

So I guess today it has hit home. I purposefully haven’t done a lot of research as I want to wait until my appointment. I hope that once I’ve recovered from the lumbar puncture I’ll be symptom-free for a while but who knows?

I’m so worried and so upset, I feel like I’m letting everyone down and hate that something so new is already having such a profound effect on us all. I should stop the pity party but it’s bloody hard with this headache!

Thanks for listening everyone, hope you all have a good week.

Hi Deedeedods

Sorry that you have to come on here, we are very friendly here and will try to help if we can. I had a lumber puncture in January, I had just found this place and got some very good advice, they told me if possible drink lots of fluid with caffeine in, about 3 litres a day, to replace the fluid that was taken. I was in bed for 3 days, I was fine but that isn’t always possible to do with family’s mine was on a Friday so I was able to have the weekend to get over it. You will be fine in a few days but if you aren’t go and see your doctor and he maybe able to give you something, the lumber puncture shouldn’t last to long plus if you have a headache the best thing to do is to lie down until it’s gone and drink some coke with sugar and caffeine in or red bull you can only drink so mush coffee, I don’t drink coffee or tea so it had to be coke cola. I hope this helps

Kay

Hello

I am sorry you’ve got your diagnosis. And the ‘headache from hell’ after the LP. Kay is right, keep drinking full sugar and caffeine coke.

We can’t tell you that you won’t get any more relapses in the short term. Sadly, I wish we could. But with a bit of luck, once the headache goes, you’ll be OK until June, then get started on a DMD (disease modifying drug) which will ward off further relapses. I know I was fully able bodied in spite of 5 years without DMDs and several relapses, for at least the first 10 years after diagnosis. And the DMDs are so much better now than they were then.

Try not to panic about you job and the future. Rest today, and tomorrow if you need to. If the headache lasts much longer than say Wednesday (and is still as bad), take yourself to A&E and ask for help. Occasionally an LP can lead to a bleed which needs a ‘blood patch’ to fix it. But thereafter you’ll be fine.

When you feel a bit better, start looking at DMD options in readiness for your June appointment. See https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for information.

Best of luck.

Sue

Take it easy and one day at a time. This is a forum where you’ll find lots of help and support. Everyone has good days and bad days no matter who they are and the battles they have, so don’t be hard on yourself.

if you have life insurance with critical illness cover, it might be worth looking into seeing if MS is a recognised condition on your policy. Many policies which do include MS under critical illness require you to make a claim within 6 months from diagnosis. This might help relieve some of the financial worries you have.

I hope your headache eases soon.

Take care, G

Wow thanks so much everyone, what an incredibly supportive place this is! Thanks also for the great suggestions for things to go away and research. Headache is gradually subsiding and I’m feeling much more like myself now. I was able to go in to work on Monday after I posted and have managed the rest of the week. Once the headache has completely gone it’ll be the first time I’ve been symptom-free since February, which is really exciting!

Hope you all have a lovely bank holiday x