To not be able to cope like this anymore?

[Shitshow]

N/C

I've just been to the doctors after two dizzy spells resulted in bad falls. One worse than the other.

No examination, no question about the dizzy spells, nothing. Just told me to take paracetamol.

I have a B12 condition and injections, I have chronic pain, bladder and bowel condition and many other symptoms, blurred vision, chronic headaches, more things which they thought was MS.

I've seen a specialist who said not MS but I had eye tracking issues and broken persuits or something like that as well as minor hypermobility.

Doctor has told me that by doing blood tests and two referrals she's tried everything and because I have anxiety I have to face that the pain is in my head.

I've literally had enough. I've tried to move doctors but the only other one in our area has an awful reputation and the other wouldn't take us.

I'm literally done. I have no quality of life and I don't know what else to do.

Have they only tested for MS? Was there no suggestion of Fibromyalgia, irritable bowel or even EDS?

I feel for you, I’ve been in a similar situation for years and no one will listen bar doing the occasional blood test. My joints and muscles are getting worse and I’m terrified I’ll not be able to move one day, but apparently ‘this is just what happens when you have kids’, even though it’s been an issue since my teenage years. They’re only just taking my digestive issues seriously, though have to wait another 6 months to see a consultant.

I saw neuro to check for MS.
First one identified issues but said couldn't be sure it was MS and MRI showed nothing but definitely issues with joint movement and eye tracking.
Second time I saw neuro I was in two minutes and he said no neuro issues at all even though first one said there was clear ones!

I saw someone to check it wasn't arthritis and that's who said about hypermobility.

I've repeatedly mentioned Fibro and CFS and doctor keeps saying no it can't be that despite the fact that I tick every single fibro box.

I was on Naproxen but I reacted to that.

I was also thinking about EDS. Don't know if you know about Ehlers Danlos, OP, but it's a connective tissue disorder which affects your joints and ligaments so causes hypermobility but can also cause bladder and bowel problems. It affects the skin and it is often linked to balancing problems and proprioception and quite often affects eyesight. It is also linked to depression and anxiety but it is not quite known why.

My dd has it and has had to have quite a lot of training to learn to stay upright. A fairly minor infection has just thrown her and she has spent the last couple of months learning to walk properly again without falling into the road (she has also lost her peripheral vision).

I’ve had similar issues where I’ve felt dizzy and unbalanced for about 2 years now. I was referred to a neurologist and had an MRI which showed nothing. He didn’t want to see me again.
My GPs always just look at me like I’m a hypochondriac as my blood tests are always normal and I’ve had things like ECG and scans which have all been normal too.
I do think anxiety plays a part as when I spend a lot of time looking after myself and resting I don’t feel as bad (never feel fully well though).
I don’t believe it’s all in my head though and it’s so frustrating trying to get someone to take me seriously.
Have you had your ears checked? A referral to an ears nose and throat doctor might be a good idea as sometimes inner ear issues can cause ongoing dizziness. Do you suffer with anything like IBS as bad bloating can put pressure on the vagus nerve which can also cause horrible dizzy spells too.
You have my full sympathy as it’s awful having to deal with an invisible illness like that

I thought POTS at first but do have a mate with EDS www.ehlersdanlossyndrome.org/
and POTS en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome.

If any doctor says it's all in your head, find another doctor, no matter how far you have to travel.

www.potsuk.org/
www.ehlers-danlos.org/
It took my mate years to be diagnosed. Perhaps go to these societies and ask if someone can recommend a doctor in your greater postcode.

I haven't heard of Pots. Will have a read thank you.