This is my first post on here so allow me to give you a little background information: I was diagnosed with RRMS in 2010 after having my first experience of what I now know as the dreaded ‘hug’. My coordination was affected and I had altered sensation in my hands, legs and torso for a few weeks but I have been relatively ok until about 5 weeks ago when I began feeling dizzy and nauseous when moving around and my balance is not too good (I’m not on any meds). Sometimes I feel ok for a while but then suddenly feel as though the blood is draining from me and I feel so ill. I’m nervous about going out without my better half to cling to, I could sleep for a week and have been off work for almost a month, which in itself is really worrying me. Does anyone else have similar symptoms? Is this a relapse?
I would be really grateful for your comments as all this is relatively new to me.
Hi hun. If there are new symptoms and they last more than 24hours then it could be an indicator of a relapse. Have you an m.s nurse you could ring? Try to rest too and see if that helps but I’d say contact the m.s nurse or even gp. Xxxx
That does sound like me in my most recent relapse. Have you an ms nurse? If so, check it out with them. If not see your gp. I would class it as significant new symptoms if it’s kept you off work so long. Hope you get sorted out xx
Hi there, You sound exactly like I feel at the moment…it’s horrible isn’t it? I will be standing up or sitting down and this horrible wave of dizziness comes over me and I feel like i’m going to fall, Its been going on almost constantly for about a fortnight and I’ve literally come back from my GP’s to see if he can prescribe something but because I’m on other meds, he said they would most likely interact. I think yours may very well be a relapse as you’ve been ok and now you’ve got new symptoms. Ms is so difficult to understand, I am often confused as to whether I’m in a relapse or I’ve picked up a virus etc etc. I would definitely contact your ms nurse or get your GP to re refer you to your neuro. It may be that you need another mri scan to see whether there are any new lesions.
Thank you all for your comments and support. My doc says it’s possibly a relapse but can’t give any meds as that side of things needs to be consultant-led and I have no MS nurse I’m due to see the neuro in November so will hopefully know more then. Don’t know if I can cope with another MRI scan either as I now also seem to be suffering with claustrophobia…another new symptom(??). I feel pretty lucky really judging by the symptoms some other people on here are suffering but it’s scarey not knowing what’s going to hit you next.
Another issue is work and how I’m going to cope when I get back. Do you all cope ok at work Lisalou, Sunflower77 & Fudgey37 (great names!)? Have any of you had to have ‘reasonable adjustments’ made? I’m meeting with the bosses soon and will have to ask for some help but not sure how to go about it. Any ideas?
I really hope you all get back into remission sooner rather than later and thanks again for your suggestions and good wishes. Keep safe! xx
I work four days a week hun and manage that pretty well along with being a mummy… I go to work for the rest haha. The only adjustment I’ve had is a parking space outside the office. I do have a very good manager who is very flexible and will do what she can do to support me. My last relapse was Feb, although it actually started November. Left with a weak left leg but other than that not too bad. Thankfully! On all my relapses its been the GP who prescribed me steroids despite having an m.s nurse. They did contact them but as its an answer machine it can be a couple of days before they respond so the GP makes a decision based on his knowledge and thankfully its always been the right one. Hope you get sorted soon hun x
OMG! You’re a very busy lady…you have my admiration Sweetie. Sounds as though you cope really well with your MS and I hope it stays that way for you… I asked for a parking space near to the entrance to work but they won’t give me one unless I get a blue badge and, as I can put one foot in front of the other, that’s almost impossible but I have applied for a second time…just in case!
Sounds like you have a really good med team and I’m pleased you’re meds are suiting you. Hope the relapses become a distant memory. Keep well, nice to talk to you. xx
Hi this is my first time on here I have had MS for nearly 30 years and only this year I have relapsed. I was unlucky and have had attacks of vertigo and lost most of my hearing in my left ear something to do with the nerves in my inner ear. I had a MRI scan. Now I woke up this morning with numbness and tingling in my torso and legs. I hope that after rest it will go away again I’ve had so many odd symptoms over the years Is there anything other than steroids the GP can prescibe so far I’ve not taken any medication ? Not sure I want to ?
Your story sounds very much like my own, apart from the hearing loss. I too had an experience 30 years ago when I woke one morning with a burning sensation in my right leg (which eventually spread up to my waist) and a thundering vibration in my pelvic area with every step I took. I went to my GP who told me it was a problem with my nerve endings and it would go as quickly as it came. I had a similar second opinion and, being young and naiive, went away quietly and learned to live with the fading sensations in my body for the next 30 years. In 2007, I lost my mum and shortly after suffered with a severe bout of the dreaded vertigo which I put down to stress. Then in 2010 I had the ‘hug’, lost coordination and the numbness/tingling/burning sensation returned in my upper limbs and face. After being told by my doctor to ‘go home and take an asprin, I don’t know what’s wrong with you’ I went and got myself an MRI and diagnosis of RRMS and now, 3 years later I am experiencing another relapse. I’ve never had any medication for my MS and, like you, am not sure I want any but it may be something we both need to discuss with our neuro? I’m seeing mine early in November so if I find anything out that may be of use, I will let you know.
I hope your symptoms go away and leave you in peace very soon. Take care and keep safe. xx
Thank you Sitish I’m new on here and only just found your reply. Your right I will make an appointment to see my GP next week even if it’s only to get my new symptoms on my med records and take it day by day from there nice to have this forum hope your in remission again soon .
I am very busy hun and I like it this way. Although round Christmas I’ve now want that I need to try not to do too much as my relapses seem to be around this time. I do cope with my m.s but mainly because I’m not going to let it beat me. I have a lil boy to keep going for… He’s my world…he’s just started school and boy is he being what I like to call an enigma at the moment! But I won’t go into that. Anyway hope your feeling better soon. And you get sorted xxx
I’m due to see the neuro in November so will hopefully know more then. Don’t know if I can cope with another MRI scan either as I now also seem to be suffering with claustrophobia…another new symptom(??). I feel pretty lucky really judging by the symptoms some other people on here are suffering but it’s scarey not knowing what’s going to hit you next.
haha. The only adjustment I’ve had is a parking space outside the office. I do have a very good manager who is very flexible and will do what she can do to support me. My last relapse was Feb, although it actually started November. Left with a weak left leg but other than that not too bad. Thankfully! On all my relapses its been the GP who prescribed me steroids despite having an m.s nurse. They did contact them but as its an answer machine it can be a couple of days before they respond so the GP makes a decision based on his knowledge and thankfully its always been the right one. Hope you get sorted soon hun x