Hi I’m looking for advise, my legs are frozen, numb and I can’t feel anything below the waist, I’m scared about if it will get worse or what I should do.I don’t have a consultant and my gp is a bit lost as to what to suggest.I’ve had relapsing/remitting MS for 12 years but this is my worse relapse . Any suggestions will be great… Thanks.
You need to see a neurologist, asap. This, of course, is easier said than done. I don’t know where you live,but the wait for a Neurology appointment is usually lengthy, to say the least, so will need decisive GP action. Your symptoms sound like mine were when I had transverse myelitis, and I think your GP needs to get his finger out and make things happen, ie get you an urgent appointment. You very possibly need steroids. Go back to him, and tell him you need help NOW!!! Really hope you soon feel better, I know how scary it is. X X
Ok, lets not panic. As horrible as this is (and I’ve had exactly the same as this) this is not a medical emergency. It’s VERY annoying that your GP does not know how to handle this, but let’s not be too hasty. And let’s also remember that steroids may only speed up the recovery and if you ask me they are more trouble than they are worth so for that reason I avoid them like the plague. However, I know you want to feel like your doing at least something but the key thing here is to be very patient. It’s so hard because you feel so rotten and you just want to be better like yesterday! But recovery from a severe relapse takes time, steroids or no steroids. If I were you I would try to keep calm, see your GP again and ask to be referred to a neurologist as urgently as possible. If the wait is too long then maybe consider going private if your purse allows it? But whatever you do please rest and be assured that this will get better, it just takes its own damn time. Sorry your having to go through this, it’s not pleasant, and PM me if you need to chat.
PS - just to warn you, this could get worse before it gets better. This may not be the case with you but it’s what happened with me. Very infuriating and scary but you’ll get through this xx
Hi, If you feel your GP is not helping you could phone NHS 111, and ask for a doctor to phone you back this afternoon. It’s free phone.
It’s always good to get a second opinion. The doctor may be able to make some suggestions, such as organising an appointment with an Out of Hours GP at the hospital or suggesting you visit A&E. You could phone NHS 111 this afternoon. I would probably do this if I was in your shoes.
Good luck and let us know how you are getting on. xx
Sorry to hear about your symptoms and the struggle that you are having. Getting to see a neurologist has been a nightmare for me and the one I saw (in a small rural hospital) was worse than useless. In the end I had to insist on an MRI.
Anyways, Ive been wondering how to get treatment as quickly as possible for my worsening symptom and Ive been thinking that the best thing is to go to the A&E of a hospital with an MS centre or at least neourologists who specialise in MS and get myself admitted. I dont know if this is an option for u or not?
It might just speed up tests and treatment. Just refuse to be discharged until they have assessed what is happening and started any appropriate treatments. Its crazy the time lags with MS, bearing in mind the importance of treatiung early and hard.
Best of luck
PS Ive been taking big doses of vit d, biotin, omega 3 since my symptons got bad and before I got a diagnosis and it kind of seems to help. Might be worth trying if not doing already.
I’m with Lenny on this one. It’s your mobility your talking about here! Time is of the essence with Steroids. If your GP isn’t taking action on your behalf, then surely you must? A referral phone call ahead to A&E would be helpful and is something my gp has done in the past. It means they are aware, and you’re not just coming in off the street.
I would recommend that you locate the nearest hospital with a neurology department and present yourself to the A&E department. Take a book, you will be a low priority, but you will get seen, even if only to acquire a confirmed appointment to receive CAT / MRI scans (if not immediately) and the potential for remedying drugs.
If you are recommended to take a course of steroids for what might indeed be a relapse, then take them and do not concern yourself with the negative experiences described by other in here.
Indulge in optimism but for god’s sake be proactive and vocal when it comes to matters of personal good health well being. don’t panic, be pragmatic.
MS will take a lot from you if you allow it; the key is to fight immediately and actively at all times. the very best of luck.
Your area may have a “rapid access” neurology out patient clinic. It might be worth checking your local/regional main hospital web sites as they often list their clinic provisions (that’s how I found this out). My area has one, but my GP knew nothing about it until I informed her, after I paid to be seen privately. It might save you some money.
so sorry you are havinga a hard time.yes it’s scary but try and keep positive.I get this when a relapse happens. Get to phone and do what the others have said.I go to bed stay wrapped in your duvet,drink lots of water close the curtain and relax.try and not get stressed it takes it’s own time.hugs to you.
Hi and thank you. Today symptoms are worse I can’t feel anything from the waist down and my top half is all numb.I’m taking lyrica but is there something else I should do like exercise or resting ? Any ideas would be great . Sarah.
Hi, Did you phone 111, go to the hospital or see another GP?
Another go said steroids or just be patient and they’ve sent a request to my consultant but appointment could take weeks. Thanks.
Hi another gp said steroids or just sit it out.
It’s v important that you are checked out properly, ie by a neurologist. Yes it is almost certainly a relapse, but there is also another neurological condition that needs excluding urgently. If your GP won’t do anything you need to go to A & E. Please get help! Take care. Sheila
You’ve been given the advice by many on here to get yourself to A&E department or ER Opie not in the UK. Your gp isn’t the one who will have further disabilities possibly, my not receiving help. I don’t understand why you’re wasting valuable time.
I’ve been referred to a neurologist but I don’t know when my appointment will be,I also suffer anxiety and panic attacks so I was hoping to not have to go to hospital. Thanks.
Does your area have a community neurology team to which you could go for help? Or, do you have / is there an MS nurse in your area? If you have access to either of these, phone them and ask for help. You should be able to get someone to come to see you at home. Alternatively, phone your local hospitals neurology nurses and get some advice from them.
Or phone your GP tomorrow morning first thing and ask for a home visit. See what the GP says when they see how bad you are. The GP could prescribe high dose oral steroids which might kick start a recovery from the relapse and hopefully they will help. If the GP thinks your situation warrants it, they will suggest you go to your local hospital for rapid investigation from the neurology department.
What you shouldn’t do is just do nothing but wait for your neuro appointment. That could be weeks or months away.
I am speaking from experience here, the same thing happened to me 5 years ago, I went from hobbling round with crutches, to no feeling and no movement whatsoever below the waist. I spoke to someone in my community neuro team (I had no MS nurse at the time). She arranged that I should go to the hospital, no hanging around in A&E, but an immediate whizz straight through to admission into their acute ward. I saw neurologists, had a new MRI and IV steroids. I never had complete remission, but some remission quite quickly. I also had physio help in the hospital and was discharged from the hospital into a residential neurological rehab centre.
Hi thanks,I think my nearest MS nurse is at the Walton centre Liverpool but they can’t see me unless I’m a patient there but as I’ve only just been referred I’m not a patient yet but my hug husband is ringing Drs in a min to see if they know of a local team or nurse. Thanks.
I initially had transverse myelitis. It came on over a couple of weeks. No one diagnosed it, not 2 GPs over several visits, not paramedics and not our little local out of hours emergency hospital doctor. I was actually told that there was no medical condition that could cause my symptoms. It was only when I paid to see an orthopeodic consultant that it was spotted and I was taken seriously, I paid for MRI and suddenly everybody’s attitude changed.
If it happens again, I am going to go straight to A&E at the hospital where my neuro is based and am going to refuse to leave until I’ve been assessed by a neuro.
You need to see a specialist.
Good luck, will be thinking of you