To ask you to diagnose what the hell is wrong with me because I'm at my wit's end.

[Welcometotherock]

Hospital appointment today. I've had symptoms for five years.

Joint pain, bladder and bowel issues, headaches, blurred vision, dizziness, intermittent weakness (feels like a minor stroke, can't lift a kettle, numbness, dragging leg behind me.
In constant pain, falling.

Been to the GP and hospital and told it's not arthritis, not muscle based.
Neurology last time told me that they was broken eye persuits and issues with rotation of joints but no known reason.

Seen today , a two minute appointment which told me there was no neurological signs at all (even though two weeks ago was told there was)

Only interested in my anxiety tablet (I had these issues way before anxiety)

And discharged me on my memory way to carry on with the lack of any qualify of life I currently have.

What the hell do I do next

Have you heard of Ehlers Danloss Syndrome (EDS) ?

I went through early menopause (age 35) after cancer treatment and the consultant said it was really important to be on HRT as the risk of osteoporosis / osteoarthritis (can't remember which!) is really high if you menopause early. You're body has had to manage for a really long time without the hormones it needs at your age?

Iodine deficiency - check the symptoms online.

Selenium deficiency - Especially given the menopause!

Relapsing remitting MS - Why haven't you had an MRI?!

Oh and get your Anti-Thyroid Antibodies checked. It could be Autoimmune!

And you should have been on HRT since 23, every day! Did they not put you on it?

Low Vit D did make me feel like that, but it was very low. I thought I had MS. Issues with balance, spatial awareness, blurry vision, insomnia, bowel issues, problems swallowing, pains in arms. A horrible time but resolved quite quickly with a big dose of the stuff.

B12 sounds low and that can go hand in hand with autoimmune disorders, especially lupus.

Consider changing GP if you can. A supportive GP who is interested in getting treatment for you is well worth it.

Another one saying Ehlers-Danlos syndrome. You need to see a rheumatologist (again if it's been a while)

B12/pernicious anaemia was the first thing I thought of. Might be the injections you're getting aren't quite right.

I'd find a good auto immune specialist.

My dad had an auto immune problem with loads of weird symptoms some of which made him very ill. When he initially collapsed he spent six months in hospital! Amd was then in and out over the next few years.

They never actually diagnosed him, just treated the symptoms.....I mean they tried to cure him with various drugs and said they didn't actually need a specific diagnosis? His consultant said there's loads of auto immune syndromes which haven't been discovered/named yet.

Got fibromyalgia and this all sounds familiar.

@AllTheWhoresOfMalta I was almkst diagnosed with fibro. Turns out I've had an iodine deficiency and Hashimotos autoimmune disease. Symptoms are almost identical. Have a blood test for Anti-Thyroid Antibodies if you haven't!

I was going to say EDS too.

Would also look at ANS dysfunction in terms of treating your symptoms and reducing inflammation.

What blood tests have been done?

I think a review of these first would be sensible. It could be auto immune, which seems to be more common in women peri or menopausal.

Friend of mine was just diagnosed with Functional Neurological Disorder. Might be worth reading up on it

GPs in Britain tend to be pretty useless. Or rather in the NHS I suppose. In the NHS they seem to refuse to refer you unless they suspect something in particular. The whole point of a GP is to refer you for anything that is out of their depth. Do you have the funds to go private or dual citizenship so you can seek healthcare elsewhere?

I'd say it's actually a positive that you've already had an MRI as it can be used as a baseline to compare another one to.

Both my GP and neurologist told me they fully expected my MRI to be clear and it wasn't, so they don't know everything.

I'd push them to do another MRI and use your new symptoms as a reason.

The intrinsic factor test is not reliable and b12 injections are for life. I second PP about support group on fb. They are really knowledgeable. If you are taking b12 or d you need to take other things as well or else you will still feel bad. If you can't get your injections increased, consider self injecting, I've just started and can feel a difference already

I just wanted to thank you all.

I've received a copy of the letter from neurology today which stated five years of pain, visual disturbances, intermittent weakness, migraines etc but then recommends no action from them but also tells the GP that no action is needed from their point of view either.

I'm pissed tbh.

I've got an appointment with the GP tomorrow but I don't even know what to say anymore :(

My best friend had very similar symptoms and she was diagnosed with MS.

Hope it goes well with the gp today. Write down any points you want to make so you don't forget them.

Welcometotherock It's so frustrating and upsetting isn't it. I hope your GP takes the time to listen to and help you today. Make sure you ask for copies of any blood tests you've had - especially iron, B12, vit D and thyroid. Le us know how yo get on x

Why did you have a full hysterectomy at age 23? This is incredibly young. Why are you not on HRT?

Well basically GP said it can't be M.E /Fibromyalgia or ED because sometimes my symptoms are intermittent.

She's said there is no physical evidence of anything (there actually is but meh) and it may be psychological.

She then said it may be the migraines causing the weakness and dizziness even when I'm not feeling the pain of the migraines.

She then concluded it may be M.E and told me to go home and Google as there is no treatment.

I tick every single box on a chart for fibromyalgia including dysmenorrhoea before hysterectomy but she's convinced it's not that.

Fretfulparent I had repeated very very large tumours on ovaries.

The genetic team decided HRT wasn't safe.

Thing is about B12 injections, they can't necessarily repair long term nerve damage.