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Many symptoms - advice please

Hello everyone, I feel quite guilty intruding on your forum as I have not been diagnosed yet and may find I am not suffering MS but would very much like some advice from the people that know best.

When I was younger it was found that I had a blind spot on my left eye from an infection my mother had whilst carrying me, scar tissue is evident on the end of my optic nerve, it never bothered me too much as I had got used to it, however every so often it “flares” up and the blindness gets bigger, I have always got it checked at the eye hospital and no one has ever explained it. I suffer on occasions with migraines but these only last a day and I know what my triggers are so control them quite well. I have always suffered badly with tiredness, my blood pressure has always been on the lower side and after having children I have remained slightly anaemic so put it down to being that and figured I was just a little too lazy lol.

A couple of years ago my eye flared up again, it causes a black area just like a migraine however it was only in my left eye, when I normally get migraines it effects both my eyes. My field vision test showed some loss of sight and the optometrist said the only explanation was an attempt at retinal detachment however the scar tissue from birth was probably preventing it. No other tests were performed other than a detailed eye exam and field test so it was left to settle on its own. After some time it went away and I put it out of my mind.

Approximately 2 months ago I noticed it had returned, I mentioned it to my doctor who referred me back to the eye hospital. Once there I spoke to the doctor who looked at it in depth, he said he couldn’t see any sign of a detachment and asked some more questions about my general health. I told him that as well as the blindness I was having flashes of light in the lower corner of my left eye, some eye pain, headaches, dizziness and fatigue. There are a few more symptoms but don’t want to bore you any more than I probably already am! He went off to chat to a colleague then returned and asked me to go for an MRI of my brain and optic area, he said he thought I was suffering from a pressure of some kind which could possibly be a tumour. This worried me quite a lot as you can imagine. I went for my MRI the following week but being the impatient person I am I rang a few days later to ask about it. I was told that the report would be forwarded to the consultant in due course but I was no longer on the urgent list. I took this to mean that nothing was seen and after a while this was confirmed by my doctor who also received the report. I haven’t heard anymore from the eye hospital, in fact I’m pretty disgusted with their lack of contact! Although my scan and bloods are clear that doesn’t take away the symptoms.

My partner has a friend with MS and started to comment on the similarities with my symptoms, I’m not one to self diagnose but had a quick look at the list of possible symptoms on the nhs website and was amazed to find I ticked nearly every box!

I asked my doctor to refer me to a neurologist which he has happily done, but has warned me that these appointments are notoriously slow. The fact that he is happy to refer me is great judging by some of the stories on here but I am worried in case the specialist dismisses my thoughts. Is there any particular questions I should ask or any other tests that could help me?

Don’t get me wrong I am not pushing to be diagnosed with MS, I just want some answers for my symptoms as they are really bad at the moment. The dizziness is unbearable and my sight is preventing me from driving and therefore working at present. My fatigue is bad too at the moment and it is really getting me down. I have headaches that seem to last all day and when I wake at night the blindness is still there so I know it is permanant and not down to stress. Before I stopped work my colleagues noticed I was getting quite clumsy and forgetful, it became quite a joke between us but I now realise it was signs pointing towards MS.

Like I say there are other symptoms but I have written a long list to give to the neurologist when my appointment comes through.

Sorry this has turned into quite the essay but like I say any advice on how to speak to the neuroligist will be greatfully received. I don’t want him/her to think I have diagnosed myself but I don’t want them to dismiss me down to my brain and optic scan being clear.

Thanks in advance. Lee.

Hello Lee and welcome. Its good to hear your gp is referring you to a neurologist…hopefully this will give you some answers. Of course!! like you say, you don’t want to be diagnosed with MS, you just want to be listened to and taken seriously. Its good that your writing things down and it will help to take this info with you for neuro to see. You may have to learn to be patient because it can take a long time to get a diagnois of ms or any other neuro disease. Whatever is causing all these problems for you I hope it gets sorted. Take care of yourself

Hi Lee,

I agree with you about not self-diagnosing - or appearing to. When you see the neuro, I suggest you avoid any reference to what you ‘think’ it might be - medics tend to dislike patients attempting to tell them their job, and may dismiss this as health anxiety, or similar. I would just stick to the purely factual - what’s been happening, when, and that an opthalmologist (I assume that’s what he was) had some concerns, which your GP shared - hence the referral. The referral letter from your GP should explain why you’ve been sent, in any case, and hopefully won’t say anything as brazen as: “Patient thinks they have MS!”

Try to keep an open mind, and not to go in with the preconceived idea you’re going to be dismissed. But I will say, consultants can only act on the evidence available, so if there isn’t any, or only very little, it effectively means their hands are tied. It isn’t that you’re being “dismissed”, exactly, or that they don’t believe you, but they can’t diagnose you, or propose a treatment regime, if they don’t have anything to base it on. So there is a chance you will be told to go home, and come back if anything else happens, because they just don’t have enough to go on.

I know this can be very frustrating, but it may help if you understand why it might be the case, rather than thinking you simply aren’t believed. Many of us here have been in the situation of knowing there is something wrong, and even having our consultants agree there is something wrong, but being thwarted by a lack of evidence, which means the consultant is powerless to act.

Sometimes they will use the “wait and see” approach, in the hope more evidence will materialise.

Tina

x

Thank you very much for the replies you have both given me some very sound advice. I have now received a neurologist appointment for the 11th of December so will keep you updated. :heart: