I'm not sure what to do next...

[Mumma1984]

So I have awful health anxiety - I've been through numerous illness worries

Cancers
Hiv

But the worst has always been MS... I'm not sure how it all started but I watched my my granddads stepbrother die of it slowly and it's imprinted on my memory - one time in about 2012 I had this onset of loads of awful symptoms- burning skin, fuzzy head, floaters in my eyes - lots of others and I just remember feeling awful and so anxious - I was continuously trying to find another answer that I didn't think was as bad, I had private lymes test etc

Anyway I FINALLY talked my doc into referring me even though he really wasn't keen and said it was all anxiety - I was referred and the neuro said the same, he did tests there which I passed and then he said look I wouldn't usually scan you, but you are beyond anxious ... I'll let you choose if you have an MRI, I jumped at the chance, had it and it came back clear.

Now since that time in 2016 - it happened again, around the time my dads cousins daughter was also diagnosed I think.

And lastly it happened again in October this year, both these instances were milder symptoms and again the docs said anxiety and that it didn't follow an MS to pattern etc.

I'm struggling so much to let it go. I don't feel it adds up to anxiety as I've had big anxious periods in between but no symptoms. I feel so worried constantly and I'm not sure if another scan will be the only thing to settle me but that would mean going private

Am I mad?! I'm just so scared of this illness :(

@SallyWD hmm I'm going to ask, my GP is a nice lady she might do if it she can, does it need specialist equipment though?

I'm not sure. I saw my GP yesterday but had to book a separate appointment for this because of the time it takes.

@SallyWD let me know what happens!

Will do! Keep us updated too.

Feeling so so anxious again today :(

@Mumma1984 Bless you. Sending love. I know what you're going through! Anyway have you visited this site No More Panic? They have a forum for health anxiety. There is a sticky post for those who fear they have MS. PLEASE read this first post!! I read it yesterday and it brought me great comfort. www.nomorepanic.co.uk/showthread.php?42556-A-Thread-for-Newcomers-Worried-about-Multiple-Sclerosis-(MS)

How are you coping? Yeh I've been on no more panic for a while - tbh it helped me at first but it can make me worse - also some ppl are so fed up with peoples worries they can be rude, that hasn't happened to me because I rarely post but I've seen some really rude replies. It's annoying that everyone else has a scan and their symptoms are gone but mine came back twice :(

Why is it things are everywhere as well, I was watching that Ross Kemp prison thing trying to rest and then some guy comes up that got 6 years for a mercy killing on his father who had MS and wanted to die, then I'm watching the voice and a a girl comes up saying her mum has ms and it's awful etc ... can't even just relax and try and take my mind off it all because it's always there! If only 1/600 people have it why are they everywhere !

I think it's just because it's on your mind you notice it. Like if you can't can't pregnant then everything's about pregnancy and babies. Or if you fear cancer you see stuff relating to cancer everywhere. 1 in 600 can feel like a lot. Say there's 600 kids at my kids school. That's 1200 parents so likely that 2 will have MS (I know of 1 that does). I'm OK thanks, alternating between being 100% sure that I have an awful illness and then being sure that it's all anxiety. Today I have this weird numb/wet feeling on my face but telling myself it's anxiety.

@SallyWD I like to think of it as apparently there is 100,000 people in England with it... there are more with HIV, Parkinson's of course all types of cancer etc ... and there are millions of people in London alone.

Yeh I get what u mean when I first found out I was pregnant there was babies everywhere and when I was worried about breast cancer the people kept putting the collection bags through my door!

Ugh my mum said to me today... what will end this worry and I said I don't know except a clear brain scan ! But then I think it didn't last time but I keep thinking I've had these 2 recurrences and woild it of shown on the first scan even tho the first 'attack was by far the worst and longest, I'd had symptoms from at least August and then got scanned in April after begging my GP to refer me and then the neuro to scan me! Neither of them thought MS... guess that's something - not just a GP but also a neurologist!

You really can take comfort from that. Neurologists have spent years studying this and deal with MS on a daily basis. If they say you don't have MS and your scan was clear I'd look for other causes (especially anxiety). Easier said than done I know (as a fellow health anxiety sufferer). It's so tough!!

I know it's just some things I can't work out like ...

why didn't I get these symptoms in between the 3 occurrences when I've been super anxious about other illnesses.

Why did I think I had let it go after the scan and then the symptoms popped up.

If there's something I can't answer I worry.

I might even ask my GP if she would refer me just to talk to a neuro not even for a scan ! I just need some closure and it's my wedding in a couple months I can't deal with worrying on that special day :(

I think sometimes you can be stressed and not realise. My recent symptoms (dizziness, numb patches, tingling etc) all started in October and I keep thinking "but how can it be anxiety - I wasn't anxious then!!" yet looking back maybe I was suffering with stress. I had a lot going on in my life at the time and no downtime. There were signs I wasn't coping as well as usual (I can remember a couple of times I seriously lost my temper with the kids when usually I'm so calm with them). I read something interesting recently: stress leads to physical symptoms which leads to anxiety which then leads to panic. I believe you can be stressed without noticing, then get the tingling and whatever then feel anxious and the health anxiety kicks in big time which makes your symptoms even much worse. Yes I think it would help you to chat to a neurologist so they can explain why it's not MS. I'd like to do the same.

Hi OP
Sorry you're so anxious it's miserable I know.
I think the best way to approach this is rather than anticipating what might be wrong and self diagnosing, is trusting that if there were to be anything seriously wrong with you, it would reveal itself at some point! That really is how it works. Vague symptoms that everyone has at times just don't add up to MS, and in any case you've already been checked out.
The problem with conditions like MS is that they can have an array of vague symptoms ( as well as serious definite presentations) that very anxious people then feel they might have.
Let it go. If you are going to get an illness, you'll get it and you'll know about it at the tine.

@mindfulmam I agree. I tell myself this sometimes. When I obsess about whether or not I have MS I think "Well, if I do it will become very obvious soon enough!". There's no point spending years stressing about something when you have such vague symptoms.

Yes it's true. But I know anxiety can trick you into not feeling sure. Try to believe you are ok, if you get ill you'll deal with it!

@Mumma1984 I feel I didn't really address your point about why you didn't get these symptoms when you'd been anxious at other times. It made me think - when I'm "consciously anxious" (I. E. I have a reason to be anxious and I know I'm anxious) then I don't get the same physical symptoms. When I'm unknowingly stressed/exhausted/overdoing it I DO get physical symptoms of stress. It's like my body is trying to alert me and make me slow down because I haven't realised I'm getting stressed. When I was diagnosed with cancer when my children were 3 and 1 I was obviously very anxious, well terrified to be honest, but because I was consciously acknowledging all my fears and dealing with them I didn't have the weird physical symptoms. I don't know if that makes sense...

Thank you guys I feel better for a bit when I read stuff like this but it's just like you can't see the rational side sometimes - if I think about rational thoughts

I have had a clear scan albeit 7 years ago it was when symptoms were AWFUL

My 2 bouts of symptoms since have been better not worse .. usually ms stays the same or gets worse

Symptoms come and go ... again not like ms it's meant to be constant for a period of time

No doctors and the neuro think I have it

.., but then you go ... what if and why do I feel this way :(

I was just looking for something to watch on YouTube and a young girl describing her MS came up ... it's linked to google isn't it :(

I stupidly couldn't help watching it and she said she had it for 10 years before she was diagnosed !

But you are doing all the right things (keeping an eye, having infestations- not google!). And so far they are all clear. I know how hard it is. I remember someone saying "you should be happy you haven't got some neurological condition". They just didn't understand how hard the not knowing is.

Yeah and I'm not sure if I'll ever be sure I don't have it, I'm torn between getting a private neuro consultation before my wedding to bring peace ( but possibly the worst news I could ever imagine before the biggest day of my life) or just going with the doctors and my bf and sAying eff it, until something serious happens forget it... and anyway if u have it u can't do anything about it anyway!

I remember the neurologist saying to me, the good news is, if you had a horrible progressive neurological condition, you would be dead by now! I didn't quite know how to take it but I guess she had a point!

Lol that would reassure me somewhat but I don't think it's the case with MS - I've had the worry and the first lot of symptoms were 8 ish years ago I think but from what I can tell people can go undiagnosed for years - I asked my GP would I of got worse in this time and she said almost certainly...

I think you need to ask yourself - if a GP AND a neurologist both say your symptoms don't match MS then why are you so scared you might have it (knowing that many other things can cause these same symptoms)? In October I started getting dizzy which made me scared. A month later I started getting neurological symptoms. My left foot sometimes feels odd, so does my left hand. In the last week I have a new symptom of numbness around my mouth, sometimes this feeling spreads over most of my face. Of course if I Google these symptoms then MS/ brain tumour comes up straight away. I've read loads of MS stories online though and I know my symptoms don't follow the usual MS pattern - I get symptoms that come and go in multiple different areas at different times. When I read MS stories it seems to affect one area like the foot then maybe spreads to the leg and the symptoms last all day for several days. I think it's more likely I got the dizziness for whatever reason then the stress caused my other weird symptoms. I am getting checked just in case it is MS or a tumour but rationally I know it's likely to be anxiety. You said you were seeing your GP soon. Have you managed to have a chat with her? Get her to explain exactly why your symptoms don't match MS.

Yeh I have an app next week, I'm going to ask her about it all and say is there a possibility I could speak to a neuro if she says no that's fair enough but I may ask for the referral I need from her to go private and speak to one, I need to put it to bed once and for all and I want to get on with my life, enjoy my wedding and have another baby.

My symptoms tend to be the same set of symptoms kind of all at once and they can be constant for a few days (maybe go off if I distract or do exercise possibly) but then they might go on or off for weeks eg I get a really fuzzy head and increased floaters but mainly at work not so much at home

I wrote my symptoms down and tried to rationalize them

Heavy numb shoulder arm/leg chiro said tension on that side causing it
Buzzing foot - rarely get this anxiety ?
Smelling smoke - 2 weeks on and off - can't see this is MS symptom
Fuzzy tension headache/floaters
Finger/Toe joint pain Rarely
Tingling
Burning skin sensation only got this first and second time but not now and it's on and off

Just seems quite a list of weird things ...