I am waiting on diagnosis, I am seeing my consultant Dr Nicholas on 27th Sept. I have had an abnormal MRI & VEP. I have also been referred to the MS clinic in October.
On saturday, i have unbelieved pain in my right arm along with a burning sensation and numbness, it eventually wore off after several pain killers. Last night it happened again, only this time worse the pain was as above but also when down my leg along the the tingling/numbness and burning sensation. This time pain killers did not help so i called nhs direct who told me to go straight to A&E. Waited forever there without being seen by a dr, had a normal ecg, then an emergency came it which meant my 2 hour wait would end up to be a 5 hour wait so we came home at 4am this morning.
I snatched 2 hours sleep before i had to get up for work. My right side is numb and feels like its burning. im dragging my leg and have a constant ache & tingling in it. I rang my gp but could not get an appointment, i also rang the ms nurse clinic but no answer
Im so scared that if i do get diagnosed with MS, this is a relapse
I’m not diagnosed either, but there is no way I would go to work feeling like that.
My advice would be stay home tomorrow and get on the phone to your Doctors …insist on a GP appointment. I had a kind of similar experience and my GP managed to fax the neuro to see me sooner than planned, Plus the GP may be able to give you something to relieve the symptoms.
It is a scary time you are right, there are lots of nice people who have way more experience than me so I am sure that they will come on and offer advice.
I’m under Dr Nicholas and I know his clinics are choka block busy. I would phone the doctors first thing tomorrow morning and explain that you need to see a gp that day- the gp could start you on steroids which may be an option.
I’ve just finished a course of IV steroids because of optic neuritus so dont want to take more this soon, plus they made me quite ill, i will ring gp tomorrow but i HAVE to work, not an option for me to go sick, just had 6 weeks off (work in education) luckily i have an easy day tomorrow and work have been great & will allow me time for appointments, just so feb up with the not knowing
Next really sorry, but you should really be resting; not working
Relapses are followed by remissions, but there’s not a huge amount you can do to speed them up other than rest and try to avoid stress. The only medical help is steroids and since you’ve just finished some, they will still be in your system and therefore doing their best to make this attack a nice short one!
I’m disgusted that your GP’s surgery couldn’t find you an appointment. Way to go to be supportive!
If I were you, I would call Dr Nicholas’s secretary and tell him/her what’s happened, that you have an appointment on the 27th and ask if Dr N might want to see you before then. Keep calling the MS nurse too. Tbh, there’s not a whole lot they can do, but I bet it would be reassuring to hear a medical professional tell you that it’s OK rather than us lot?!? You could always ask for advice about pain relief - you’re having neuropathic pain so normal painkillers really won’t do much. (Ice packs can sometimes help burning btw.)
Try not to panic. MS does some pretty weird stuff to us, but despite what you’re going through right now, you will get through it.
The MS nurse called me yesterday, I explained my symptoms to her and she said, yes you are in a relapse, I told her i havent even been diagnosed yet! She replied its ms.
I have been signed off work and have to go into hospital next week for IV steroids again, the whole of my right side is now numb tingly and burning & cant walk properly, every now n then i get shooting pains, hope the treatment will fix me quicky xx
Sorry you’ve heard the news so abruptly, but at least you know now.
One very important thing though - I thought you’d just had steroids? Does your MS nurse know this? You aren’t supposed to have steroids back to back - in fact I think NICE recommends twice a year as a limit.
Please check that they are aware of your previous steroids.
I had steroids end of July for Optic Neuritus, she was aware of this as I told her, she rang Dr Nicholas for advice and he said I had to have them again, apparently up to 3 times a year is the max as i was told yesterday, not looking forward to them as they made me feel lousy for about a week after but then i guess i can deal with that better than te weak right side & pain im dealing with now x
