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I had a relapse in Jan 2012 my consultant said I won't diagnosed with ms until I have another relapse,

My name is Katie and in Jan 2012 I lost the feeling in the right side of my body I couldn’t walk or write or anything at first I thought I was having a stroke. I carried on working etc until I fell over and couldn’t get back up this went on for a few days I went to hospital and they did several tests eg lumber puncture, mri scan etc. The tests show a lesion on the left side of my brain, but the consultant said he won’t diganose me until I have another relapse. It has been a year and half now and I haven’t had anything else happen apart from, pins and needles, tiredness, sensitive skin, poor balance and my memory is awful. Does anyone know how long between each relaspe as I am constantly worried when I go anywhere that something bad will happen to me? I am also having B12 injections and I’m not sure if it’s just symptoms from the lack of B12 or if I really do have MS. Could anyone help as I am very confused.

Many Thanks

Katie

Sorry to hear this and can u understand how you feel … on one way you want to know what’s happening and what’s to blame for how you feel. O waa diagnosed in 2004 at the age od 24. I was told over the phone as I waa having a relapse … my first one. However I had the mri purely due to episodes of sensations in my hands and knee. Had i not had that first relapse he would have still diagnosed m.s and there was no talk of waiting for another relapse to diagnose it. My second relapse was six years later. Not sure if this information helps or not but thought it was worth telling you my experience xxxxxxxx

Oops can u is meant to say I can … doh x

Hi Katie,

There is no way i know of to predict relapses, the condition itself is so massivley variable that nobody can know what the future holds. Personally i have had 3 relapses in the last year, but you may have none at all! I know how frustrating the waiting game can be, but probably best to try and get on with things, knowing that you are in good hands and whatever it is will make itself known at some point in the future. Good luck, Laura x

Hi Katie.

The reason that neuros wait for a second attack to diagnose relapsing remitting MS (RRMS) is that there are actually quite a lot of things that can cause a one off attack (e.g., ADEM). So, while your symptoms are very MS-like and you had that lesion in your brain, there is actually a good chance that you will never have another attack and therefore never develop MS.

A lot of people find the “when/if it will happen” worry very difficult to live with, but I’m afraid getting a diagnosis doesn’t change anything: no one with RRMS can predict when their next attack will happen or how long it will last. Uncertainty is a huge part of living with RRMS :frowning: Obviously, having an MS diagnosis makes symptoms a lot easier to explain to others so, if this is one of your concerns, you could ask your GP for the proper term for your condition, e.g., CIS, clinically isolated syndrome (basically a single, MS-like, neurological attack).

Vitamin B12 deficiency can cause neurological symptoms, but you shouldn’t get any new ones once you have your levels under control. Telling the difference between B12-induced symptoms and CIS-induced symptoms is very difficult though so I’m afraid you’ll probably never be able to resolve that one. If you get new symptoms and your B12 is fine, then it’s definitely neither and you need to see the neuro again.

It might be worthwhile taking a vitamin D3 supplement as well as the B12 injections because low vitamin D has been linked to the development of MS and lower levels of vitamin D are associated with relapses and with more severe MS. Most neuros are now recommending that people with MS take a vitamin D supplement although the amount varies. The most common amount seems to be 5,000iu a day. You can buy these on-line at a very reasonable price (~£12 for a year’s worth). Your attack may not be going to develop into MS, but there seems no harm in stacking the odds at little more in your favour?

Hth.

Karen x

Thank you to you all for your responses, I will look into taking some extra supplements and I will try to put it to the back of my mind and just get on with things, I do have another appointment with my consultant in December so I will wait to see what he says then.

Thanks again