Forum

Alison

Hello. I’m new to this site. Haven’t been diagnosed with Ms yet but have had symptoms over the past twelve years or so mainly dizziness and now my legs are so weak and wobbly much worse than they have bn before. Can’t see a neuro for four months and my gp basically said just to get on with it as even if it is Ms I prob wouldn’t qualify for treatment. I’m so scared and anxious at the moment - hoping that my legs will improve but it’s bn three weeks now and I’m sure tha last time I had wobbly legs it didn’t last that long. Is this a normal pattern of RRM or does it mean my legs will just stop working altogether?

Hi Alison

I’m sorry to hear that you’re struggling with your GP to get the care and treatment that you should be receiving.

Unfortunately, no one here will be able to tell you with confidence if you have MS or how your symptoms may affect you. That’s the job of the healthcare professionals and can only be confirmed with an MRI and subsequent testing.

However, we have all been in the frustrating position with healthcare workers being slow, unresponsive and unhelpful.

Is there any way you can see a different GP at the same practice? You have the right to ask for a second opinion.

This is a link to the NHS’s position on it: http://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68

In RRMS, relapses ‘come and go’ and can take up to 3 months to recover, or partially recover. There are treatments that can speed this up in the way of steroids, but a confirmation of MS would be needed first.

I hope you can get back in touch with your GP and help speed the process to find out what’s going on. It can be an anxious wait and it’s not beneficial for anyone involved to ‘wait and see what happens’.

I’ve had a relapse lasting a year before, but I did recover - so I think three months is a conservative estimate of how long the longest can be.

I’m not saying that’s what will happen to you, but it’s not outside the realms of possibility for relapses to be very long indeed.

Three weeks is still well under the average length of time - which is about five or six weeks. The minimum length of time for something to be officially recognised as a relapse is 24 hours, but in practice, I think it’s probably quite rare to have one as brief as that.

You probably wouldn’t qualify for so-called “disease modifying drugs” (DMDs) on a first confirmed episode, as that is not normally sufficient for an MS diagnosis (unless you’ve ever seen a neurologist on any of the past occasions). Usually, self-reported episodes don’t count, and you’ll need at least two that have been clinically verified to get a confirmed diagnosis.

Although that doesn’t apply to steroids - some people are prescribed steroids if there’s a confirmed “demyelinating event” - even if it can’t yet be diagnosed as MS. Steroids may hasten recovery, but have not been found to alter the overall course of the disease. In other words, you wouldn’t have a worse prognosis because you didn’t get steroids promptly - or at all. They only speed up what the body will eventually manage by itself - they don’t change it.

Tina

Thanks for replying. I did see a neuro six years ago with the same symptoms. He said my brain scan was normal therefore it wasn’t ms. Strange how the same symptoms are back but worse this time! Wish it would go away!

The gp said exactly the same thing to me and put me on a non-urgent referral to the neurologist, I felt as an after thought. By the time I saw the neuro most of the relapse had gone but there were still signs of inflammation. He did believe me, unlike the gp, and was sent for a couple of mris. I then had to wait for another relapse before they could diagnose ms.

definitely worth seeing another gp to try and get a more urgent referral

Dear Alison ( I am an Alison too).

I was diagnosed a few years ago now and I am still very well with a few relapses - but managing to work as a paeds nurse. I still qualify for DMD’s ( disease modifying drugs). These are not a treatment but an investement in your future ( My MS nurse’s words … very wise!!).

Sadly many GPs are not known for being proactive with vague MS type symptoms. I was told by a GP that I did not have MS. Very rude. You just need to be patient and hopefully you will have some answers soon x

Anyway I just want to say that there is no treatment but I found looking after myself has really helped. Early nights, regular excercise , good diet.

Getting my diagnosis I found solace on this forum - i don’t come on here much now but it was a saviour when I was in limboland.