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 :(

Are you actually trying to treat your anxiety though? You talk about paying privately for tests to ally your anxiety but nothing about treating the anxiety itself? You would be far better off paying privately to get to the root of the problem.

Yeh sorry I did forget to mention - I've done CBT, taken Setraline as well but the Setraline really didn't agree with me and the side effects were awful so my doc said they just don't work for some ppl, the CBT I'm still doing but atm it's not helping, maybe it will in time :(

An MRI will settle your mind but only temporarily. Next year you will need another one. The problem here is health anxiety. It’s a horribly debilitating condition and needs treating as a serious condition in its own right.

It is also important to find another coping strategy for these intrusive thoughts. Medical investigations such as MRI’s and the follow up to have the results explained are hugely expensive. I’d spend the money on some really decent private counselling instead.

CBT is one of many different taking therapies. It didn’t work for me either. I ended up having psychotherapy and transactional analysts which worked really. I also tried 3 different anti depressants until I found the one that worked.

I have health anxiety too, usually around DVT. I think you need to go back to your GP and ask for more help in managing it. Sertraline helped me but if it didn’t work I would ask to try a different anti-depressant, just because sertraline causes side effects doesn’t mean another SSRI will and your GP shouldn’t have just shrugged and said ‘oh well, it won’t work for everyone’ when sertraline didn’t work for you. I would push for a different anti-depressant, and although it’s hard when you’re getting awful side effects try and push through them as they usually begin to subside after the first few weeks.

I know how hard it is to have very real symptoms with no diagnosis and every test coming back clear. You just want to know what it is so you can get treatment.

After 10 years of tests, someone asked me if I had experienced anything traumatic in my life. They told me that trauma can result in physical symptoms that are real (not in your head). The body is an amazing thing and it still blows my mind. I don't know whether this is a possibility for you too.

I was referred to a Neuropyschistry and was diagnosed with a functional neurological disorder. I also now have a diagnosis of complex ptsd. Some of my symptoms are actually sensory flashbacks.

I'm not saying this is the case for you, it's just a thought. Here is a link to a book that helped me make sense of it.

The Body Keeps the Score: Mind, Brain and Body in the Transformation of Trauma https://www.amazon.co.uk/dp/0141978619/ref=cmswwrcppapiii_LBwhEbJKNY2QH

@toothfairy73 how Interesting... I was misdiagnosed with a kidney problem for 11 years until I was rushed to surgery, I was born with it and it caused me a lot of pain and reoccurring infections but the GP's just kept saying I was fine, I hold this responsible for my anxiety ... misdiagnosis

That must have been terrifying.

It's so hard, being fobbed off, being told there is nothing wrong with you. Makes you feel like your going mad.

I found the book fascinating, We recognise that emotions cause physical responses such as feeling sad=cry embarrassed=going red, but not any other physical symptoms.

I had symptoms such as extreme fatigue, muscle pain, tingling and numb lips hands feet and at one point they were looking at MS for me (there is a family history).

@toothfairy73 did your symptoms come and go? The thing that worries me is they come once every 3 years and last about 2 months and then regardless of anxiety level they vanish, so I don't really have any symptoms atm but MS is all I think about

And yes the kidney thing was awful - my mum was told she was fussing and we had the doc out in the night constantly and then I remember being in hospital and everyone visiting and looking down on me feeling sorry for me :(

My symptoms came and went. When they came they seemed progressively worse. They kept changing too; and so weren't consistent with just MS. I had so many tests to rule out all sorts of things; Addison's disease, myasthenia gravies and all sorts of other things. 9 years of tests.

My dr said it was anxiety but I didn't feel remotely anxious. I felt like I would never lead a normal life again. My GP told me to "stop catastrophizing and think about something else". It was awful. It was only when it was suggested to me and I asked the neurologist she said it was a possibility

Hope you don’t mind me muscling in on this one, only am new here and been reading your messages and just caught up.

@toothfairy73 so did they go in the end? Mine don't change but they do come and go and if I go out with friends eg or do a gym workout they would usually go, I won't google those other illnesses as I'll end up a mess! Last 2 times mine have started with smelling smoke too, which if you google says brain tumor or sinuses - well it's not brain tumor because I think after this long I'd be dead or a lot worse but that symptom is one the GP's just look confused at tbh - I try and explain to them and my current doc is very nice and explains things well, I asked her if I didn't have anxiety would she of done the same things and she said yes, it doesn't follow an MS pattern and also I've had a OCT test on my eyes and they are very healthy - no optic nerves issues etc

It's just exhausting tbh, if I knew 100% it wasn't MS ... I feel like I'd be a lot better

I've read that book too.

I recommend TRE Yoga and I have heard EDMR has been helpful.

You need to rule out any medical issues first, it's the first step. If you continue to have that smell then get it checked out.

Do you have any traumatic experiences that link to that smell? Some of my flashbacks are linked to a smell

@toothfairy73 not that I know of, I only had it 2 weeks each time then it went and the doctors say it's anxiety! Phantom smells apparently

I once or twice could smell cigarette smoke; thought my Nan has come back to haunt me

Ah yeh so the same thing - it's scary actually because I felt like I was in a room filled with smoke and everyone I asked 'have you had this' looked at me like I was mad.

Again it was on and off for those 2 weeks, coming and going - I presume if it was terrible it would be constant?

I feel for you. I've responded to your previous posts saying how anxiety can cause all these weird symptoms. Health anxiety is hell, pure torture. It takes over your mind, your life. I've been having dizzy spells since October, along with weird sensations in my left foot and hand and a feeling like a chill running through the left side of my body. I actually see goosebumps on my left leg and not my right leg so I'm not imagining it! Unlike you I was actually too scared to go to the doctor until yesterday. I'm having some neurological tests in a couple of weeks. I'm just sick of the anxiety, of always feeling scared. It has such an impact on my interactions with my husband and children. I just want to feel normal again. I hope you get your fears resolved and can finally believe you don't have MS. I'm sure you know plenty of diseases mimic MS - fibromalgia, vitamin b12 deficiency, vitamin D deficiency etc. I'm having blood tests today for all these things.

@SallyWD thanks :) what neuro tests they doing? Wonder if they can do them on me again...

I had all the bloods - only thing that came back a tiny bit low was my vit D it was 47 and the nhs threshold is 50, I've been taking a 4000 strength vitamin for a month now and I've just had it retested - results should come Friday. I also stopped my depo injection and started something else in case that had any effect !

I've had DVT, Cancer (all forms), eye herpes, MS, HIV, Syphillis, Kidney Failure, Hepatitis (all kinds), heart failure...
All actually health anxiety. It's debilitating beyond belief but you need to treat the actual cause.
Try a different therapy, try a different SSRI. Another scan isn't going to fix this.

@Mumma1984 They are doing a cranial nerves exam in my GP's surgery. I think there are 12 cranial nerves that come down from the brain stem and they can do tests for each nerve (e.g. One nerve relates to vision, one nerve relates to balance etc. etc). If you have MS or some type of brain tumour (and many other brain conditions) then at least one of the 12 nerves should give an abnormal reading. I'm amazed I haven't heard of this given all my obsessive googling. I'm nervous but looking forward to (hopefully!! Touch wood) getting normal results... Or at least finding out it's nothing too serious. There are plenty of benign brain conditions that can cause weird symptoms.

@SallyWD wow and they do it at your GP's? I have a GP app at the end of the month, is your GP some kind of specialist thing? I've never heard of it!

Yes my GP is doing it. After I googled it I read that all GPs should know how to do it (part of their basic training). When I went to the GP 5 years ago thinking I had MS he wouldn't do any tests as he was certain it was all anxiety.