I was diagnosed in 2005 after my 2nd relapse spasms, affecting movement and speech, 3 months after my 1st - Optic Nuritis. Since then ive have had 10 years sort of symptom free, just little bits of numbness and ice pickheadaches, similar to when my spasms started but have been lucky enough for it to not progess like before. I have numbness down my left leg. Ive been on oral steroids for 5 days and this evening its spread to my groin, torso and down my other leg. Tomorrow is back to work for me. My bladder is not great and I feel that this has come back to bite me - I was getting away with it lightly!!! My nurses funding has stopped at my local hosp (36 miles away). My gp isnt a specialist. Do I just sit it out and see what happens or try to get an appt with my neuro? Im just not sure where I go from here! My employers do know I have diagnosed ms, but this is my first relapse with them.
sorry to hear that you are in relapse.
it’s rubbish to be left without an ms nurse.
so if you’re sick why the rush back to work?
maybe let them see you when you’re not at your best?
you must look after yourself.
give yourself time to heal, which involves a lot of rest.
why not get an appointment with your neuro because it seems that you don’t have many options available.
it makes me hopping mad to hear how some areas of this country don’t have the facilities for someone with ms.
i’m very lucky because here in greater manchester there is loads of support.
maybe write to your mp.
your relapse isn’t over until your body lets you know.
Agree with Carole on this one. Why have you got to go back to work when you’re ill?
Mind you, I worked straight through my relapses - and diagnosis - although my boss graciously gave me the rest of the day off on the morning I was actually diagnosed!
BUT I did work from home over 90% of the time. I don’t think I’d have been able to do it if I’d had a daily commute - especially as I don’t drive.
As it was mainly my legs affected, I didn’t have a huge problem with sitting at home e-mailing and answering the phone.
I do not think there will be any point seeing the neuro or GP, if you’ve already had steroids, as they won’t be able to give you another lot so soon, so it really is just a question of waiting it out.
The GP might be able to prescribe something for the tingling, but nothing works for numbness (that I know of). Presumably, if you’ve been prescribed steroids, someone already knows and accepts you’re having a relapse, so you don’t need to take further action to make sure it’s on record.
I don’t personally think it harms you to work during a relapse, if you feel up to it. I don’t feel it harmed me - I was grateful for the distraction, as I think I would have been worse if I’d been stuck here alone with nothing else to think about but my symptoms. BUT, if you’re a driver, I’d think very carefully about attempting to drive with a numb leg. Could you control the vehicle adequately? If you drive knowing your ability is impaired, and have an accident, you could be held liable. You are supposed to exercise common sense, and not wait for a doctor to tell you you shouldn’t be driving. Sorry if you’re not a driver, or not planning to drive - making this irrelevant.
It turns out I was mis informed! They still have the ms nurses its just that their phone is broken… oh well, spoke to my consultants secretary today who told me what was going on - its just impossible to get hold of someone when you need to!!! Steroids are finished but numbness and tingling have spread. I realise it could take a while to settle down, but seriously I have a busy April planned! Flights booked for Dublin & Copenhagen this month to have a blast with my son before he leaves for Canada on a 2 year visa. Grrrr! I struggled at work a bit today, along at my own pace, so hinng I may take tomorrow off to catch up with the nurse d look at changing my diet and look at taking some vitamins, D dvit perhaps? Time to start planning for my future.
Well, it’s good they still have some nurses, but poor that the phone was broken, and that you were given completely wrong info about funding.
I don’t mean to sound negative when I say I don’t think diet or vitamins will make the slightest difference to a relapse that’s already happened.
There’s increasing evidence everyone with MS ought to be supplementing with Vitamin D3, as it may have some protective effect, but it will not halt a relapse that’s already in full swing.
As for diet, a decent balanced diet should be all that’s needed. Although my neuro did mention low salt! He tends to drop these random things into the conversation almost by chance, with no systematic plan to inform all patients. He’s very research oriented, so I’d guess he’d read a paper somewhere.
He didn’t give me detailed guidance about salt, and certainly didn’t say NO salt, but since the conversation, I’ve tried to avoid adding any on the plate, even though I don’t actively seek out low salt foods.
Thanks Tina, I do realise that the healthy eating/ lifestyle wont clear up this attack, and when all is said and done I’ll just have to sit it out… but its the positive steps I’ll be making in my own future to help prevent this disease from taking over my active lifestyle that I really need to focus on to help me get over this episode, my first bigish symptom in almost 10 years since diagnosis - which understandably means I’ve been lucky so far and who really knows what my next 10 years will be like? Ive never been a salt adder in food consciously, and I am going to try to go paleo with plenty of fish, chicken, a bit of red meat meat, fruit & veg and of course sticking with 70% cocoa plain chocolate and expensive red wine!!! Ha ha x thanks for your messages x
you’re a girl after my own heart!
70% cocoa plain chocolate and expensive red wine … (dreaming here)
i’m on brandy just now. it warms my cockles and helps me sleep.
i’m happy if i can eat anything because my appetite ran away and left me,
i had an egg sandwich in sainsbury’s cafe but then went and got a salted caramel cupcake whch was lush!!
i actually have to up my salt intake because i’m prone to sudden drops in blood pressure and then i faint, hurting myself usually.
anyway you enjoy your paleo diet and wine and chocolate
Eventually spoke to my GP today and now have an apt tomorrow morning & I’ve also blagged a full set of bloods & been referred to my Neuro - I am a woman in charge of my own destiny… Seriously though, I have 4 children, youngest now 16. Ive worked as a tennis & skipping coach (my daughter represents GB) as well as an English Teaching Assistant & I’m now working in an office. I am fairly fit and healthy for my age - 49 this year but this has been a blow to me. My eldest son is about to travel & work in Canada on a 2 yr visa (where his girlfriend lives, so not sure if he will be back!) and about to have a hectic month of family fun visiting Dublin for a drop of the black stuff followed by a journey to visit my brother in Copenhagen and a drop of the golden stuff (Carlesberg!) - notice all the beverages In the past, I have tried to follow the paleo plan, but more recently the 5:2 plan in an attempt to keep fit and healthy. What’s peoples take on Terry Wahls protocol? Peoples thoughts would be welcome…
Well, it just seems to be getting worse. Last night I thought id take my dog round the block, bu actually only managed 100m before a panic attack about my legs feeling like jelly and couldnt go on. I rang rect last night as symptoms seem to have been building since starting amtrypamtaline and not getting better, I thought. iNHS NHSperhaps it was a reaction to the medication, although I have had it before. Its only been a week since I started I started taking them and things are getting worse, not better. I spoke to a nurse and then a doc last night who referred me back to my gp this morning, but cant speak to anyone until 8.30. Im also waiting on a 2nd set of results for a liver function results to see if its fixed itself.
Sorry about all the mistakes! Im typing this on my phone in bed with just a small screen.
hope you get sorted soon !