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It all points to MS

In February I saw the neurologist regarding the MRI scans I had at the beginning of the year. I was originally sent for the scans as I have had episodes of optic nuritis in the passed and last year had 3 falls within 6 months leaving me worried about my balance. The neurologist said the the MRI showed a few white spots on the brain and with the problems I have described said that it’s likely to point to MS. He then said as the episodes were far apart he cannot give any treatment at this time and to see how it goes. I have not been given any other information about where I can get advise if I have any other problems and could wait months for another appointment with him if I need one. I can see on here that people are mentioning ms nurses and support groups but I wasn’t given details of a nurse and I cannot see any support groups in my area. Feeling a little confused as to what to do next.

I’ve just got referred to an MS nurse, but that’s only because I self referred for physio at my neurologists rehab centre. She has been brilliant. If there’s something similar near you I recommend it. Xx

You will only be given a referral to an ms nurse when you have a diagnosis of ms.

Your diagnosis seems to be ‘probable ms’. Forgive me if i am wrong here.

Do you have the number of the neuro secretary? if so - give them a call and ask them to clarify your situation.

Are they waiting for you to have more symptoms before a diagnosis is given? If you have lesions on your brain i can’t understand why you have not got a diagnosis.

If you have no luck i would go back to the gp and explain the situation and ask for advice on what to do next.

I can’t believe you have been abandoned like this.

Have you had a lumber puncture? I would have thought this would be the next step or evoked potential tests?

Teresa.x

Thank you for your comments. Teresa; I haven’t had lumbar puncture. I went to my GP yesterday as I have had a strange sensation in my feet and legs for a few weeks now but none of the other symptoms if had before and having no other info or support I’m not sure if is related or classed as a relapse etc. The GP has referred me back to the Neurogist but can’t give me anything for my legs.

The neuro was waiting to see if you had new symptoms which you now have. It is possible to have one isolated attack of ms which is known as CIS. More ongoing symptoms are more ms like.

I would think this will get you closer to a diagnosis.

You can get a diagnosis from just an mri but some neuro’s like to double check with a lumber puncture and evoked potential tests.

You are going in the right direction now you have been sent back to neuro. Explain your new symptoms and ask if there are more tests you can have so you can get a diagnosis.

The earlier you get a diagnosis if it is ms, the sooner you will be offered medication and help with your symptoms.

The gp can’t give you anything for your legs - he wants the neuro to see your new symptoms. The neuro will advise your gp if he wants to prescribe any medication at this point.

You are still ‘probable ms’ until you get a diagnosis so please keep an open mind as even though the neuro said ‘its pointing towards ms’ it could be something else. There are other things that mimic ms symptoms but hopefully you are on the right track to getting some answers.

Good luck

Teresa.x

Thanks again Teresa for your comments. I am unsure of what I should and shouldn’t be doing whilst having these new symptoms in terms of exercise and massage treatments etc. I have signed up for Race for life again this year and wanted to try and do some training before I do it in June. I know it will be a struggle with these symptoms but it hasn’t stopped me walking at this stage or climbing stairs. I don’t want to make things worse or cause any long term problems by doing so. I could wait a couple of months for an appointment and don’t know who to ask in the mean time.

Hi teresa, i have just been diagosed with a single episode of ms, i am now on steroids 500mg daily for 5 days, did you ever take these and if so, did they help you, i am sorry i find it hard still to take all this in… any help you can give me would be very much appreciated… jill

hi all im pretty much in the same boat at minute. mri revealed 5 quite large spots on brain neuro said everythings pointing to ms but ill discharge you for now back to gp. feel totally abandoned at min x

I phoned the Neorologist today as my symptoms seem to be getting worse and cannot wait 3months for an appointment. Someone is supposed to be calling me back tomorrow so fingers crossed I will know what I should and shouldn’t be doing with these new symptoms. No one else seems to be able to advise meat the minutiae.

The neurologist said today that it is another episode of symptoms and is giving my details to a local ms nurse. I can exercise if I feel up to it and the symptoms may go or may not. He hasn’t confirmed it’s MS but now I have someone to contact if I have any other problems which helps me a lot.