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 :(

I can't help with the health anxiety aspect but my dh has MS, he was diagnosed in 2009, and it really doesn't have to be the bogey monster you've built it up in your head! There are loads of new effective drugs coming on the market now and someone diagnosed today has a very different outlook to someone diagnosed 20 plus years ago. My dh works full time, coaches a sporting team and gets on with his life. I can't say it causes him no problems, it does but he manages and lots of people have illnesses that are a lot worse. So maybe instead of constantly worrying if you have it, think 'so what' if you do, its manageable!

Hi OP
I think you are falling into the trap of seeking further reassurances. I think you need help to mange your anxious thoughts.

@Mumma1984 I have all those symptoms and more (well I don't have the smelling smoke one but everything else). As I type now my left foot is buzzing away. When I first went to the doctor with my long list of symptoms he almost laughed and said "That's not how MS presents itself. To have all those symptoms in different areas your whole brain would be full of lesions." @IWantToBeNynaeve I'm sorry your husband has MS but glad he's doing well. I know 2 people who have been diagnosed in the last 10 years and both are doing well. One is a man in his 40s. He's extremely fit and healthy, always running, never ill, no relapses since diagnosis. Another is a woman in her 40s. She's just got back from a very active skiing holiday. I certainly don't want to minimise the suffering of people with MS. My mum's cousin has had it 30 years and life is very tough for her now. However, I do know that for some it can be mild for a long time and that there are very promising new treatments.

It's tough isn't it as my partner is of the mindset / look if I had something I have it and I'll deal with it, why worry which is a mindset I admire, I guess my experiences with MS have caused this huge fear, I slowly watched someone deteriorate and I was a child watching that and it's imprinted on my brain as a terrifying experience plus the other person I know with it has an awful time so I guess there are degrees of its severity and progression but my experiences have been not so nice on top of that I have had health anxiety for as long as I remember so I have a natural trait to worry over health hugely :(

That's reassuring sally that you are in a similar boat thanks you :) the smoke smelling I think could be like your dizziness... a trigger for everything else - I got it for 2 weeks on and off daily it wasn't permanent- I've read the main things that cause smelling smoke are anxiety, Parkinson's and a tumor ... I don't believe it's a tumor or Parkinson's as I had it in 2016 as well as this past October so I'd have more symptoms of those illnesses or be dead by now!

OP how long is it since you last saw the neurologist?

April 2013 - worst set of symptoms started August 2012 ... 2 sets since 3 years apart

The 2 sets since have been much milder and shorter

I think you could try to take focus away from MS and other illnesses. If we all started thinking about them constantly Im sure most of us would begin to feel a bit of tingling somewhere. The other part of this is not being sure/ not trusting yourself and letting it go once you've been reassured.
My own opinion is start with problem solving - chat to the GP. That is your medical intervention. Don't immediately think oh I can get private other appointments or it's a bit pointless getting the GP opinion.
If it becomes all consuming you do need help either self help to learn to let things go , or a referral from the GP there are many cbt techniques could help you.

I go through phases of feeling more positive and I don't have any symptoms atm so that makes that easier but then I fall into thinking that's how MS works and it comes and goes etc

I'm doing the CBT and I'm thinking of discussing alternative meds to setraline which made me feel awful! And I'll see her opinion on the private appointment's, just scary to see all the stories saying GP's got it all wrong for ages with other ppl !

@SallyWD any news on your test? I have my doctor app to chat Friday

Hi @Mumma1984. So I had my full neurological exam yesterday. I was a nervous wreck thinking they'd find something seriously wrong. Everything was perfectly normal. I had a really long chat with the doctor. Suddenly getting dizziness plus these weird neurological symptoms has scared the life out of me. I've been getting numbness in and around my mouth, tingling in my left arm, weird feelings in my left leg, chills and visible goosebumps going through the left side of my body only. This couldn't be normal?! She explained that the combination of my symptoms, my blood test results and the neurological exam results confirmed that I do not have any tumours or neurological diseases. It's likely that low oestrogen (perimenopause) is causing a lot of problems, I also have low vitamin D. She suspects I get vestibular migraines (causes dizziness without headaches). But the main thing is that my stress and anxiety has made my symptoms 100 times worse. She said I had extreme tension in my neck which meant the muscles were pushing on the nerves going to my face, arm and leg causing some numbness and tingling. She's advised I prioritise stress reduction and relaxation. She suggested I do massage, reflexology etc. She also said that the human body is strange and it's very common to have strange neurological symptoms for no reason. Most people just dismiss them but when you're anxious you become fixated on every sensation. You know exactly what health anxiety is like - it's a demon and plays with your mind. I find it hard to accept there's nothing seriously wrong but I also think she's an excellent doctor who knows her stuff. I am trying my best to trust her and already feel so much better. Going to make a real effort to relax and look after myself. How are you doing? I hope your chat goes well on Friday. I recommend you have a full neurological exam too just to put your mind at rest. Sorry that was so long!!

@SallyWD aww that's such good news for you, I'm please :)

I'm still anxious and panicky, I'm going to ask the doc about the test I had and ask what she thinks and if I decide to use it I'll ask for her to give me a referral to go private.

When I look at the list of things I've had I really am trying to rationalize - the arm thing I had a numb ish shoulder the chiro said was because my left side was so tight and rock hard jammed up, reckons either anxiety or how I sleep on that side.

I've had my vit D done and it was low at 43 I but now it's been retested its over 150 so it's tripled in 2 months

My fuzzy headaches atm are just at work so I've ordered some blue light blocker glasses to see if they help me too xx

I meant ask about the test you had!

@Mumma1984 yes I think it's worth doing it (ask for a full neurological exam) just for your peace of mind. It took about 15 mins. I have to say when you describe your symptoms they really don't sound like MS at all. Like you say there's an explanation for each symptom. Even when there isn't an explanation (like my left sided goosebumps) it's usually nothing sinister. Do you think you need glasses or a different prescription for looking at the computer screen? I needed to get varifocals for looking at the screen. I'm already shortsighted but needed extra help for looking at things close up.

@SallyWD had a full OCT scan on my eyes just before Xmas and they are fine, no glasses needed and he couldn't see any optic nerve problems or anything !

I have a feeling my doctors won't offer the test yours did but I'll ask and then I may ask about a referral note to go private and finally discuss again with a neuro - I'm desperate to enjoy my wedding, I didn't enjoy Xmas and have been worrying constantly - I've also been testing myself all the time - walk in a line with eyes shut, touch nose with eyes shut, turn hands over back and forth quickly, stand on one foot for as long as possible (I actually got bored doing this I can do it for so long)

It's just so life consuming, I have so much to look forward to this year I don't want it ruined by this!

@Mumma1984 I think if you push hard enough they should give you the test. Any GP can do it and they don't need specialist equipment. It's just like giving you a slightly longer appointment and doing a check up. I had to wait 2 weeks for a slot but my doctor was very happy to do it. Haha, I've also been doing all those tests! We're a right pair, aren't we? Since my neurological exam I've still been getting weird numb feelings in my face and dizziness but these symptoms don't have the power to terrify me now. It's liberating. Hope it lasts!!

That's so great for you, what does the test involve then? My worry is I have no symptoms but the headaches at work atm but that's how MS works isn't it, comes and goes and I've had a occurrence of the same symptoms every 3 years 3 times 🤷🏻‍♀️

There are loads of different neurological tests they can do but the key thing is that they test all 12 of the cranial nerves that come from the brain. My test included an examination of the optic nerves, testing my periphial vision, testing sensation on my face, testing strength in all four limbs, testing reflexes (apparently if you have tumours or MS lesions your reflexes react differently). There were other tests too that I can't remember. Yes M and S symptoms come and go but isn't that true of a lot of illnesses (including anxiety)? When I had cancer you'd think the symptoms would have been permanent as my tumour was permanently there but I had many months between weird symptoms that I now think were cancer symptoms.

Pretty anxious and nervous about my doc app tmw - I hate going to the doctors :(

Me too! I have a real fear of it. Good luck @Mumma 1984. Let me know what happens.

@SallyWD thank you I'll let u know what she says xx

@SallyWD so she was so nice again, she wrote down my symptoms and said they aren't really even related to MS and they follow no clinal pattern and they don't point to a specific nerve delimination which is what MS is. She did however say I will write to a neuro for you and explain your symptoms and ask their opinion if you should need to be referred for any reason, she said the one thing that's stumps her slightly is the smoke smell thing but she said she is reassured that it's not constant and that it comes and goes and that I've had it in 2016 and 2019 because it would be more persistent and continuous if it were worrying - so I'm hoping the neuro says no referral needed OR refers me and finds so problems x

@Mumma1984 your doctor sounds lovely - and very wise! I really hope what she said (about your symptoms not following a nerve delimitation) have made you realise you don't have MS. I think she's done the right thing - writing to a neurologist for their opinion rather than referring you. She's probably doing it mostly for your peace of mind. I hope you feel more relaxed now and can enjoy your weekend. I think it's really promising that you said you hope the neurologist says it's not necessary for you to see them. Before you were really keen to see one - so that's a good sign! X

@SallyWD well I was kind of thinking if they did say they wanted to see me id be scared they think there is something wrong but if they don't ask to see me then they think I'm fine, I'm worrying a bit about the response to her letter but I'm trying to relax, I'm going to try and focus on my wedding diet of shakes and healthy dinners and exercising and attempt to keep a positive mind !

@Mumma1984 good attitude. Good to focus on positive things!