Feeling very down

New diagnosis and before diagnosis
1

Hi,

I am new here. I have come on here to find some support because in real life it is easy to feel that you are dealing with vague issues alone. I don’t have a firm diagnosis, and am suffering from the anxiety and in-limbo feeling that this causes.

Four years ago just after my daughter was born I suffered a severe and sudden episode of double vision and partial facial paralysis. I was treated with strong steroids, which cleared the problem almost instantly. I had an MRI and lumbar puncture, both of which indicated that there was a strong chance that I have MS, but was told that diagnosis would not happen unless I had any further attacks.

Now I am suffering all sorts of odd symptoms that could be related or not. My vision is affected by a sort of shimmering affect like a migraine aura, only it never develops, just comes and goes but I’ve had it for around three weeks now (I think!). It also feels like my right eye is looking through a window but my left isn’t - hard to explain, but my right eye just doesn’t seem to be focussing quite as well. I’ve got tinnitus, which I usually have, partly because I get blocked ears a lot, but I feel it’s worse than usual. I feel a bit nauseous, a bit dizzy, sometimes a bit disassociated. I also get a slightly tingly feeling across my back when I bend forward - again, this is nothing new for me and GP previously told me not to worry about it and many people have positional issues that cause slight nerve tingling. I am also suffering a bit from what I think are anxiety symptoms: my heart is beating hard, my normally slightly shaky hands are more shaky than normal. I’ve also got random itches all over the place. All of these symptoms come and go in various combinations.

I have been referred to the neurology dept for an “urgent” appointment, which means I have to wait over 2 months! My GP has said if it gets worse to go to the A&E, but really last time it was all so horrible that I don’t want to have to go through with that again if I can’t help it. I also feel that on the scale of things my symptoms are very minor so I shouldn’t complain, and there’s really no need for A&E but I am feeling very upset and anxious.

I suppose I am partially worrying that it could be something else entirely that needs treatment before September. On the other hand I’m also worrying that if it is MS, given it’s not very severe, perhaps it’s not an “attack” - I’m now starting to think that perhaps it has just been a gradual build-up of symptoms over the course of six months or so, and that this is just a general deterioration in health rather than a relapse. My husband tells me of course it will go away again, but I am scared that it won’t.

Obviously, if it’s progressive rather than remitting there won’t be anything I can do about it, but I’d be interested to hear whether anyone who does have relapsing-remitting has very mild relapses?

Any advice on how to stop myself worrying? How to explain my worries to my family without upsetting my little girl?

Thanks in advance.

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If you go to A&E and they admit you, you may be able to jump the queue and get tests/diagnosis sorted straight away. Would save you months of worry one way or the other x

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Hi. I don’t know how much help I can be but I just wanted to say that I can totally empathise with your anxiety that because the symptoms are mild but ever present that it could be progressive MS. I was diagnosed with relapsing remitting MS this May but spent the previous 12 months knowing there was a good chance I had MS. Because I didn’t really understand it (although I thought I did) I was scared out of my mind that it was progressive because I always have some symptoms. When the neuro told me I had relapsing remitting and explained why I had symptoms even though I am in remission it was such a relief. An odd thing to say when you have just been diagnosed with MS but I am a mum of two young children (5 and 12) and a secondary school science teacher and was constantly imagining the worst. And definitely the more tired and anxious I am, the worse the symptoms are even though it is not a relapse.

I found that until I had a definite diagnosis, when I tried to explain my worries to my friends and family, they just told me not to worry and I was imagining the worst and it would turn out to be nothing. I think it is human nature to tell people not to worry but it doesn’t help the person who is worrying!! Makes them feel dismissed and I certainly felt like a bit of a drama queen. Having said that, until all the tests were completed and I had a diagnosis, it became a case of ‘just hanging in there’.

I hope that you get some answers soon

Susie

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Thank you for replying. Susie, that is exactly what’s happening with me: not that I do feel I understand it at all. I just can’t stop worrying. I think the problem is compounded by the fact that I’m just sitting here waiting… either for something so awful to happen that I have to go to A&E or for the months to tick by and then get more tests ordered up and it all take months and months more when I just feel totally disconnected from life.

I’ve chatted to the GP again, she has spoken to the neuro’s secretary, trying to move my appt up, but I don’t have much faith that will happen. I guess the only other thing I can do is try to get her to persuade them to at least do an MRI in advance? No idea if that kind of thing is possible, but if I have to wait 2 months, then another month for an MRI, then another 2 months… It is endless. I’ve recently been going through something similar with an ankle injury: I was super-lucky to get a cancellation so initial appointment was only a week’s wait, but then a month before MRI, then another 5 weeks for a CT scan, now I have follow up appt in September! That all started back in Jan when I first went to the GP and put on 10 week wait for physio. I decided in the end to go to a private physio who wrote to the GP to get them to refer me to ortho rather than for more physio.

Ugh. I am just so fed up with feeling dizzy and sick already. I could cry every time my little girl wants me to do something energetic.

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I really wish I could tell you that there’s something you can do to speed things up but unfortunately my experience says otherwise. It has taken me about 8 years in total to get a diagnosis including 2 hospital admissions for relapses (although no-one knew that’s what they were at the time). Is it possible to ask your GP if they can at least treat some of your symptoms? I know my GP was able to give me medication that helped specific symptoms at some points.

Also, it turned out that I was really anaemic and felt better when I was then put on iron tablets.

I do understand what you mean about feeling disconnected from life, I felt as of there was really no-one that I could talk to except my mum. I was so worried that they all thought I was just attention seeking, or stressed and anxious because I was (and am) coping with a son born 13 weeks early and all the ongoing problems that come with that. I was worried that the docs thought that too and that’s why they weren’t doing anything. Turns out I actually have a great neuro who genuinely thought there was a physical problem and was doing everything he could but it just takes time (I got so fed up of hearing that so I’m sorry I’m repeating it to you!)

I also have a great GP. My one piece of real advice is to make sure, if you can, that you have a GP who listens to you and cares, mine does, she’s brill, I’ve only been with her for the last couple of years but it made such a difference.

The other thing that has made me feel better is taking some control of my health and lifestyle even though I work long hours, have 2 kids and feel under par a lot of the time. I have tried to make my diet healthier (without feeling deprived) and I am exploring exercise that doesn’t exhaust me (I used to run every other day but can’t do that now) I have found pilates and swimming great.

I was wondering if you have a good support network and people who can help you with your daughter sometimes.

I’m sorry that I don’t have anything more helpful but you are not alone in feeling like this and I really hope that you will get answers soon.

Susie

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Horrible for you with so many overlapping concerns and so few fixed points to allow you to distinguish one possible cause from another.

I do think your instinct about A&E is quite right - I wouldn’t go there unless there was a sudden alarming crisis either. If there is a sudden alarming crisis, that’s the place for you, no question - that’s what A&E is for. Otherwise I think you are right that it is better to hold one’s fire and wait, hard as that is.

I wonder how well you feel you are managing the anxiety at the moment. Stupid question, I know - there is nothing pathological about feeling anxious when one has plenty to be anxious about! But I’m sure you know what I mean - I am interested in how you are managing with the stresses and strains of life generally and how well supported you feel in dealing with all of that. Anxiety is one thing that is, perhaps, a little easier to address than some of the less well-defined medical things that can come to bite us. If you think that you might benefit from a bit more help with managing the anxiety, whether medication or counselling or some other sort of therapy like CBT, it might be worth pursuing that with the GP. When anxiety levels are under control, it can sometimes be a little easier to see the wood for the trees with other things. It can also make life a little more enjoyable and less of a strain and, goodness knows, we all need a bit of that.

Anyway, I hope that you get some reassurance or at least some clarity soon about what ails neurologically.

Good luck.

Alison

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Hello again,

Thanks so much for taking the time to reply and for your very helpful suggestions. Actually, I’ve had an incredible piece of luck, in that my GP (or rather the GP at my surgery who I’ve been talking to… luckily all 3 of them that I’ve had dealings with recently have been excellent) had called the neuro’s secretary to ensure the appt was marked urgent, and asked that I be put on a cancellation waiting list. Also suggested I could try to see him privately, so I called the Nuffield to ask about that - turns out most of the delay was because he’s away for much of the next month. Anyway, that was Thursday. Friday morning I was feeling a bit better anyway, then an hour into work I got a call from the hospital saying there had been a cancellation and I could go at lunchtime! Amazing. So, against the odds I’ve seen the neuro already.

He seemed good, and thorough, and talked me through everything. I’m now going to be waiting for an MRI and the visual evoked potential test. But I feel SO much better for being in the system and not just waiting for something grim to happen to send me to A&E. And Alison, you are so right - now that it is all coming along nicely, my anxiety levels are well down on what they were last week and some of the symptoms have indeed reduced or at least I’m not interpreting them as being life-ending, as I was in my stress-ridden over-dramatic way last week. Neuro explained to me even random muscle twitching could be down to stress. Not that he was at all dismissive - he said we def need to check out whether it’s MS, but a) some of the symptoms sound migraine-related though the duration is unusual and b) he explained to me that MS treatment had moved along a long way since even my previous episode, which also reassured me somewhat.

In terms of support, I’m actually in quite a good place. As I say, GPs are excellent, work is very reasonable, my husband is as involved in childcare as I am, and my parents are around for usually half the week at least. So I don’t need physical help, it’s more the matter of struggling to deal with the worry when there’s not much tangible to be worried about, and feeling it escalating but not wanting to talk to people too much in case it’s nothing, and family trying to be lovely and reassuring and saying “try not to worry”… easier said than done!

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