Scared and need advice pls

[Sarahw]

I've had MS for 14years but it's not been to bad. Before Christmas I had a small relapse then it went ok on 16th Jan.however the day after 17th Jan below the waist went frozen and above the waist went numb.my balance isn't good and because I'm frozen and numb (worse on right ) my right foot is quite jerky and I can't feel the floor (on the right ) gp isn't too knowledgeable about MS and another gp suggested steroids or just sit it out.Cannot see a neurologist for months. Is there anything I should do like rest or exercise (which is best) steroids or sit it out I just don't know ? I'm currently on 2 lyrica a day

Thanks.

Edited 25 Jan 2017, 11:28 am by Sarahw

[Marina]

Sorry to hear you're having these sudden new symptoms. It's no wonder you feel scared

 

Do you have an MS nurse? If not, ask your GP if there is one for your area; there tends to be MS nurses for most areas. An MS nurse would be able to advise you of what's best and book you in for steroids if that's what they'd think best. They can also prescribe certain meds for MS or your symptoms. Many MSers consider their nurses to be their first port of call.

 

If you don't have a MS nurse and if your GP doesn't know if there's one (although they should know), have a look on the MS Trust's "Map of Services" here:

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

On the left side, enter your postcode or town and how far you'd be willing to travel. Below that, make sure there's a tick in "MS nurses" and not in anything else. Then click "Apply". This will bring up that area in the map on the right, with pins for where there are nurses. If you click on a pin, it will tell you who the nurse is and in which hospital. You can then give that info to your GP to arrange for her/him to contact you ASAP.

 

This tells you a bit more about MS nurses: https://www.mstrust.org.uk/a-z/ms-specialist-nurses

 

Good luck, and please let us know how things go. Feel free to ask us about anything you like

[Sarahw]

Hi thank you,my nearest MS nurse is the Walton centre but it says you need to be a patient there.My gp referred me there but said they may or may not accept me I've just got to wait .So technically I'm not a patient yet ....

Edited 25 Jan 2017, 2:06 pm by Sarahw

[Nick]

I Sarahw, really sorry to hear your problems.

 

Try this contact, it,s the MS nurse for the Walton Centre

 

Fiona Lynch ]fiona.lynch@thewaltoncentre.nhs.uk

0151 529 5645

Area covered:Cheshire and Merseyside

self referral or from any health professional.

Edited 26 Jan 2017, 10:34 am by Nick

[Skippysprite]

Hi Sarah

 

If you get no joy from the Walton centre, go back to the GP, explain how worried you are, and ask him to try and push it for you as an urgent appointment, either with the ms nurse or neuro.

 

Hope this helps (((hugs)))

 

Pam x

[Scully]

Hello Sarah,

 

I concur with all the above advice.

Where were you diagnosed 14 years ago? I assume you weren't in contact with the MS Nurse then?

 

I would suggest, if the GP has referred you there, then it's always worth calling the MS Nurse there, and tell them you have become frozen and numb and you need some urgent help.

 

Also, see the GP asap, ask him if he will call the duty neurologist at the Walton Centre and explain? It sound like a larger relapse which they should be looking at, or at least advising the GP to prescribe the higher dosage of steroids to get you through this?

 

It seems wholly wrong to ask you to just sit and wait, if you are diagnosed with MS and you're in relapse....waiting shouldn't be an option should it?

 

Not sure how you are managing to get around....but I fear it's time to bang on a few doors rather than wait it out?

 

Scully

 

 

[Sarahw]

Hi thanks,my right leg was totally numb today I couldn't feel it at all,I went to the Drs. She sent an immediate referral and Walton have made me an app for mid Feb . I can't have an MS nurse until I've seen the neurologist.I was first diagnosed at Chester but moved to Walton centre a few years ago. My gp has given me steroids and lyrica.

Thanks.

[Marina]

An appointment in mid-Feb? Is that what they consider "urgent"?

 

And you can only see the MS nurse if you've first seen the neuro at that hospital, despite having been DX'd years ago? Is there maybe another MS nurse somewhere else, who doesn't need a neuro's referral first, even if a bit further away?

 

Both of those sound a bit out of order to me. Sorry, but I get so cross when I hear things like that.

 

Kick up a fuss, if you have the energy for it, tell them it's urgent and that having a numb leg as well as balance issues is a risk to yourself.

 

This might be a tad inconvenient, but I have heard of MSers going to A&E if they can't have "urgent" attention otherwise. If you tell them you have MS and have a severe relapse, they might be able to help you there and then. If you can't feel your right leg, you're in danger of falling over and breaking bones; I'd consider that something that needs urgent attention. Like Scully said, waiting shouldn't be an option in circumstances like these.

 

You could also maybe try phoning the MS Trust, as they're quite involved with MS nurses, so they may be able to provide some advice: 0800 032 38 39

 

In the meantime, the steroids might help. Do you know what dosage you're on and for how long?

[Scully]

Hello Sarah,

 

Well done for getting at least something moving.

The steroids, although none of us are 100% keen on them, they do work well in getting you through this relapse...almost turn you into a superwoman for a while at least.

Expect, that when you come off them, you may feel rough for a while. Not everybody experiences this, but just be aware.

 

So glad your appointment is not too long ahead.

 

I still can't get my head around the fact you can't have an MS Nurse until you've been seen by the neurologist....my GP referred me, and all I had to do was to produce the the diagnosis letters from the neurologist, be it a past one or a or sent one...bizarre.

 

But, at least you are in the system now. Take it easy, and take care of yourself.

 

Do stick around and let us know how you are fairing....always good to have people who know what your going through. It helps us too!

 

Scully

 

[Skippysprite]

Hi Sarah

 

Glad things are moving forward, albeit slowly, what I can't get my head around is not being able to contact the ms nurse until you've seen the neuro.....even though your diagnosed. Never heard of this before, and if I were you, I would make a fuss,, the ms nurse is the one that can help the most.

 

I would ring them and explain, the nurse may very well say they will see you, as things are bad and worrying you so.

 

Why oh why do the powers that be make life more difficult than it already is?

 

Pam x