To give a brief history, I was diagnosed last year with rrms. Although I’ve had whatever this is ten years. Chronic dizziness is my main symptom. It never goes away, I can’t work, drive etc anymore. Over the last ten years I’ve often been bed bound for a week or 2 and then I gradually return to my baseline. This one is different and I’m so scared. This hit me 4 weeks ago now, I woke up one morning (after a poor night sleep, which always effects me so much) and I had no power in my hands, I don’t know to explain this… it’s like they’re not my hands. I can still lift things but with great difficulty. Followed by my legs becoming so weak that I can now barely walk to the toilet. I keep having to move them just to check if i can. My dizziness is through the roof and I’ve so much pressure in my head, feels like it’s more on the left side. I took a course of steriods which did nothing for me. Ms nurse said about trying another course in couple of weeks which i think pointless as didn’t help first time. Just had extra side effects. I have three young children and I’m just so worried that this is not going to end and that I’m not going to come out of this relapse and be able look after my children again. Has anyone had anything that sounds like this happen to them? Thank you for reading x
Very recently I’ve been experiencing very similar symptoms you describe.
My GP has said vertigo can be problematic with people who have MS.
I’m not just getting dizzy spells with nasuea but also “muffled” feelings in my hands and legs.
this sounds very scary, I understand your thoughts on steroids and respect any decisions about your treatment. My limited understanding is that steroids are used to support the body’s natural recovery systems, so might be worth another punt if your trusted professionals recommend them. It is really hard to try & stay calm in the face of the terror of new or changing circumstances, but I hope you feel supported by friends & family and able to get support from others on this site.
All the best
Hi guys I’ve been reading your posts off and on recently, I must say how well you do to support each other and offer advice it’s quite humbling really. I haven’t been diagnosed with ms but about 8 years ago I had a single isolated episode which entailed weakness in right leg and ring and little finger on right hand. Also vertigo and fatigue. I had an mri and lumbar puncture but nothing showed up so discharged and sent away to recover which I did.just slight weakness in leg and hand when I have over done things. The end of September came as a bit of a shock for me as I experienced incontinance,weakness in right leg and han,numbness and tingling I lower jaw an right side of face. Also awful fatigue and feeling drunk, my memory has been terrible and trying to get my words out has been a nightmare. I saw the neurologist just over two weeks ago and he says that I have some inflammation attacking my spinal column and is sending me for an mri. He was going to put me on steroids but because he though I had started to turn the corner he would leave it for now. I was just wondering if any of you could spread any light on whether I should phone the hospital to find out when my mri is scheduled as I’ve heard nothing yet ,I’m due back to see the neurologist in February. I’ve been left with this awful fatigue and numbness and tingling in hands and right foot, do you think they are thinking ms, I must admit it has been in the back of my mind since my first episode all those years ago. I’ve never posted anything on here before but it would be nice to hear any advice that you guys could offer thank you.
It probably is ‘normal’ to have a relapse like this. The biggest problems with RRMS are that a) everyone and every relapse is different, so normal for you might not be normal for the next person diagnosed with the same RRMS; and b) steroids aren’t reliable.
So the first problem is the relapse, it sounds like it’s both sensory issues (ie, not knowing what your limbs are doing) and motor (which is why your arms and legs are feeling weak).
Is the relapse getting better at all? Have you had any help from a physiotherapist? Are you registered with a physio service? In my area we have a community neuro team which includes physios. So if you have access to them, phone and try to get some help, if you don’t, get a referral from your GP or MS nurse. They could give you some help with exercises to gently help you out. Equally, try for some help from occupational therapy. They might be able to get you some equipment to make life easier while you get over the relapse. For example a perching stool for the kitchen and/or bathroom and maybe a crutch to make your walking better and safer. Physiotherapists can often help with vertigo as well.
I totally get why you don’t want a second course of steroids, the big problem with them is that they sometimes work and sometimes don’t. Even if they work on one relapse, they might not work the next time (or vice versa). Plus, their own side effects can make you feel like crap. So, as they didn’t work the first time, I doubt (as you do) that they’ll help now. They work best the earlier into a relapse you take them, but their effects stay in your system for a while, so they could be working just a bit even now.
I hope it all starts to improve over this week.
It’s impossible to know whether you could now have developed MS following your ‘clear’ tests 8 years ago. If your neurologist says you have some inflammation in your spine without actually having seen it on MRI, he’s either a magician (ie able to see into your CSF without any powerful magnets being utilised) or there was something in your earlier tests that is throwing up warning signs. He’s certainly acting fairly quickly (albeit after having to wait after referral to see him).
I say he’s acting quickly because seeing him in late November / early December and scheduling a repeat appointment for February is quick.
In your situation, yes, I think you should check that the scan is being scheduled in enough time for the radiologist to have reported on the scan and for the neurologist to have decoded that information. Try phoning the MRI department first, see if they have the referral. If not, then phone the appointments team. If neither have the details of the referral, then try speaking to the neurologists secretary and asking if the referral has been done.
Best of luck
Aw thanks for your reply I never thought of it like that .you are quite right how would the neurologist know without a scan. I will take your advice and phone the hospital to chase scan appointment. Also when I’ve been reading other posts on here it has made me realise how long winded the diagnosis journey is and I have been lucky to be seen quickly. I will let you know how I get on. Did it take you long to be diagnosed sorry I don’t mean to sound nosey.