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Newbie - I dont know where/who to go to?

Hi everyone :relaxed: I don’t gave a diagnosis yet but neuro pretty much agreed it’s ms. Symptoms started in beginning of June this year with pins & needles in my feet, spreading up to my waist and turning into a numb tingly feeling. This lasted 5 weeks and tailed off. Mri then showed 3 areas of inflammation. A month or just over later it started in my hands along with Lhermitts sign. This has been on going since 3rd August and now my shoulders down to my hands are so Shaking. Im getting really scared and worried as it’s so happening so fast. I had a course of steroids 2 weeks ago that did nothing for me only put me in bed for a week, I was so ill. My gp said to just wait until my next appointment which is 2 weeks away. I’m scared to wait though. Should I wait? Who should I be speaking to, my gp? The Neuro? I’m so confused. I’m still waiting for a lumbar puncture but that could be months away. I hope I can get some advice please. Thanks Lynz xx

I hope it isn’t RRMS, but even it it is, please know that the style might well settle down over time, with or without disease-modifying drugs (DMDs) to help matters along. My RRMS arrived with a bang and it was all very frightening but, after a lively few months, it went pretty quiet and Avonex (one of the older DMDs) then kept it contained for some years. I know that’s only my personal experience, but that is what happened.

Hang on in there. It doesn’t sound as though there is anything you aren’t doing, or that the medics are lining up, that isn’t in hand already, so it is probably a matter of trying to stay calm and letting the process play itself out. I hope you get some answers soon.

Alison

your GP deals with assorted health issues.

the neuro deals with ms.

ms nurse does the same.

mine is also called the ms nurse consultant.

you should be allocated an ms nurse at the appointment.

it’s a massive one this appointment.

take someone with you to help you remember all that you want to discuss.

they can also help remember what the neuro says.

it looks like you’ll be leaving limbo land soon.

be strong. xx

Hello Lynz

Yes, it does sound like your neuro is pretty convinced it’s MS. And the fact that you improved after your first attack seems to indicate that it is the relapsing remitting type.

Having said that, it can take a really long time for a relapse to remit, or otherwise get better. Plus, there are some symptoms that just don’t remit entirely (I’ve not been able to feel my feet properly since 1997!). But what often happens is that you compensate for the deficits in your nervous system, so your ‘new normal’ is slightly different from the ‘old normal’.

And steroids are absolute devils. You can’t trust the beasts one bit. Sometimes they work perfectly and do exactly what you want, which is to shorten a relapse to get you back to ‘normal’, whatever that happens to be. Other times, they do bugger all except make you feel like crap. Which is what it sounds like has happened to you this time.

Just because the steroids haven’t done much this time, doesn’t mean your symptoms won’t remit over time; weeks or maybe months sometimes. And it doesn’t mean they won’t work next time. Like I said, they aren’t trustworthy. It’s always a lottery when you take steroids. The only thing they can be trusted to do is give you a vile taste in your mouth, make you insomniac and basically make you feel rubbish.

The good thing about RRMS of course is the availability of disease modifying drugs (DMDs) which aim to reduce the number and severity of relapses. I’m sure the neurologist will be discussing these with you at your next appointment. As well as put you in touch with an MS nurse who will be of great help when choosing which DMD is best for you.

As Carole said, take someone with you to the appointment. You might otherwise be afflicted by neurologistitis (this is what I call it anyway). You go in there with all good intentions, questions to be asked clear in your mind; you sit there absolutely knowing that you understand all that’s said. You then leave the neurologists room and immediately ask ‘what just got said?’ And ‘what did s/he say happens next?’ Or ‘what do you think s/he meant by X,Y and Z?’ Your friend, partner or family members job is to remember everything that’s said. And to remind you of what you had planned to say.

I know you feel utterly desperate at the moment and want someone to help you and talk you through what is going on with your body. The trouble is that an acute relapse only requires instant medical attention in rare cases. So if you’ve completely lost all motor and sensory ability below the waist, or become utterly physically disabled, or are unable to self care and live alone (or you and whoever you live with just can’t cope because of physical symptoms, then you could go to A&E. But if it’s a relapse that’s made you feel bloody horrible, but you can cope with your own care (can use the loo, wash and dress etc) then it’s not a medical emergency. And as your GP has said, your appointment is two weeks away.

It seems like that’s forever, but it will go by, honest. And if you need us to support you, then carry on posting. We’ll do what we can to help. Good luck Lynz.

Sue

Hi Lynz,

You don’t say what the appointment in two weeks is for. Is it for more tests? Your GP won’t be able to do anything for you at the moment and the neurologist will need to do all the tests in order to make their diagnosis.

I know it’s a very worrying time waiting for answers. It’s know as “Limbo” by those of us who have been through it; and we are all agreed it’s the most awful situation. While you are waiting you’ll find this forum a very good place to air your fears, get them out in the open where they’ll do less damage than brooding about them.

You can come here whenever you want and you’ll find empathy and understanding about anything you want to talk about. Whatever you’re feeling you’ll find someone who has been there and is willing to hold out a hand to help you though this process.You may even make friends.

I know I have.

Best wishes,

Anthony

Hi

this is definitely the place to be, I’m in limbo too.

my appointment is this Thursday, 27/9 and I’m sure it will just be to confirm MS and then put me onto my ‘team’ - I’m hoping they all wear capes and masks but then I’m a comic book fan so go figure!

if you read through the various posts on here, like I have, you soon realise,

  1. you are not alone

  2. all your odd feelings are the ‘normal’ for people on here

  3. whatever the question you want answered, you’ll find it on here - it may take some time to scroll through the responses though.

Good luck