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

Completely agree with pushing for an MRI to rule out MS.

I know a few people who've had many of those symptoms and who have turned out to have a specific antigen called HLA B27.

It often goes undiagnosed, because it can cause a wide range of problems that appear unconnected. They include:

psoriasis
psoriatic or reactive arthritis
uveitis or iriditis
ulcerative colitis
ankylosing spondylitis
pulmonary fibrosis
cardiac problems

None of them have all of the above, and there are doubtless more that I don't know about, but the list seems to be growing all the time. My late father had pulmonary fibrosis, which was considered idiopathic, but during his final stay in hospital they ran blood tests and he was found to be HLA B27 positive. He had no other symptoms that I know of.

I was tested when my arthritis got much worse following a campylobacter infection, but I was negative.

It's an auto-immune thing and can often be effectively controlled by immuno-supressants. Apart from pa, everyone else I know who has it was diagnosed by a rheumatologist.

www.nhs.uk/conditions/sjogrens-syndrome/

Is it worth looking at this. It's an auto immune disease affecting various body systems. Someone I know has this.

Look up hEDS (Ehlers Danlos Syndrome, hypermobility type). Sounds like it could fit. Also second those PP saying B12/folate deficiency. Have you also been checked for coeliac?

I had a lot of your symptoms when I was diagnosed as peri menopausal. I paid for a private blood test. It cost £100 and is worth it. Get your testosterone, FSH, and iron stores (different to iron that gp does) tested. Also vit D.

Don’t underestimate the debilitating nature of peri menopause. I was bed bound for weeks at a time.

Ehlers-Danlos syndrome

Welcometotherock Probably not what you want to hear, but I'm in a very similar state, getting desperate and scared feeling so awful all the time and getting nowhere with drs.
I've got very similar symptoms to you, also with stomach issues.

HRT hasn't helped.
Loading injections of B12 haven't helped.
Flying visit to neurologist 2 years ago.

Feel like I'm actually wasting away and can't get any help.

Sorry you're going through it too :(

Muscular dystrophy? Some variants progress very slowly...
I have a relative who had similar symptoms and finally a dna Test confirmed.

I'd also suggest even with the injections low B12. See if you can get an extra dose.

I know I sound like a stuck record, but have you had the following tested, and if yes, what were the results?

Calcium
Vitamin D
Parathyroid (PTH) - note: this isn't the thyroid, the parathyroid are four little rice size glands that live near the thyroid (hence the name), but they regulate calcium.

Msg me if you'd rather. I've been through all sorts over the years and have finally found a balance, or as near as I'm likely to get to. I've had a lot of help from support groups. It was a private doc who put me on the right path.

I have no idea what you might have, but I wanted to say this: DO NOT GIVE UP. Keep going back and back and back to the doctor until you have an answer that makes sense to you. Sometimes it is a long process of elimination, but you need to do it. Do not feel like you are wasting anyone's time or energy in searching for an answer.

Have you ever been tested for Lupus?? I have a friend who was with same symptoms and no one could find a cause, then she mentioned a relative had lupus and they decided to test her and spot on was it!

Unfortunately, it sounds very much like ME/ CFS, I have had all of those symptoms earlier in my condition, I am unfortunately much worse now. My symptoms very closely mirror those of MS, nut ME is classed as a neurological condition by the WHO. Most recent research suggests that the issue is at a cellular level, due to issues with how energy is processed via calcium channel blockers (as this impacts every cell in the body, it impacts multiple different systems).

If you do have M.E then unfortunately you join the rest of ‘the missing’, as we await a breakthrough that will provide a treatment and finally see us treated with respect and hopefully make every Doctor who has accused us of mental health issues sincerely regret their poor treatment of us.

hfme.org/themesymptomlist.htm

www.hfme.org/themeabilityscale.htm

www.meaction.net/2017/03/16/calcium-channel-ion-defects-research-from-australias-griffith-uni/

www.healthrising.org/blog/2017/02/28/biomarker-aussies-chronic-fatigue-syndrome/

Just came on to say I do hope you get it sorted out soon, it sounds miserable keep putting up with all that. Sorry can't be much help otherwise. I guess everyone else seems to have covered everything. Good luck and 💐

I had really bad symptoms for a year and got nowhere with NHS just kept sending me for lots of cancer tests which were all negative - for cervical, bladder, bowel, kidney, uterus. I was given an operation for fibroids in uterus but didn't change anything.

I always suspected Lyme as I had a Lyme rash and symptoms got a bit better when I was put on double antibiotics for a pelvic infection. Symptoms I had were bladder symptoms (but these preceded rash), unexplained bleeding including from bladder, constant pain in legs and arms, constant dizziness, flu like symptoms every 2 weeks with temperature during which would get hallucinations sometimes as so out of it, pins and needles, numbness, felt unbalanced walking, out of breathe very easily. Unable to work and lost job as so ill. Ended up in hospital 3 times. Chest pains at one point. Blood tests just showed anaemia, CT scan showed enlarged adrenal gland, enlarged uterus and cyst on ovary but then lost so not followed up. In the end asked a US medics advice and they suggested double antibiotics for Lyme for 2 months, did that and its 95% gone.

A private doctor suggested MS for mine but never had MRI but don't think symptoms match and also that wouldn't be helped by antibiotics. There is a Lyme blood test here but its only 50% accurate so not great - I never took it as antibiotics give false negatives and was not well enough to get to stand for 3 hours for blood tests. It might be worth you doing a Lyme blood test esp if you ever remember a strange rash and improve on certain antibiotics but yours does sound more like MS, really needs a specialist though. I totally understand the desperation, it is better to get a doctor to diagnose something then you can be certain its right. I think mine is right but yesterday both my legs were purple with blotches everywhere and then wonder again but then I have been 95% better since October now and have resumed working from home. Only thing I struggle with now is bladder and exercise - I can swim though but nothing else, I also have strong allergies now but otherwise OK. Hope you find what it is - I found specialists better than GP.

Google Ehlers Danilo’s syndrome, if you can’t connect the issues, think connective tissues

Liquid iron stopped my anaemia and the magnesium in it stopped the aches and pains. Get medical advice though before taking supplements - too much iron is bad for you.

Did you have your ovaries removed? If so, you could try HRT

CFS (previously ME)
Lupus
Fibromyalgia

To name a few. Echoing what PP have said though, do not give up, pester your GP until they refer you or do more tests. I was fobbed off for 20+ years, a 15 min consultation with a rheumatologist and I had a diagnosis, his words were "there is no doubt in my mind you have X, it's very clear and it should bit have taken this long to get an answer"

Keep pestering them

BlackInk so sorry you feel like this too :(

I wasn't given HRT after seeing the genetics teen due to family history but yes they took full ovaries. It's 17 years ago since my hysterectomy.

I've joined a few FB groups to ask some advice and am doing a bit of reading thank you.

Neurology say it's joint based.
rheumatologist said see neurology although they did say there was minor hyper mobility.

Just so low and fed up.

I had a MRI five years ago. Nothing showed up. He said yesterday it was pointless doing another one as it would obviously be clear.

*team

I don’t think randomly throwing diagnoses’atOP is helpful.
Clearly you need to start from scatch. See a different GP then use chose and book to be refered elsewhere. Keep copies of all your clinic letters and blood results.
My first though is repeat the MRI.
Keep in mind GPs see hundreds of people with ‘ medically unexplained symptoms’ and somatizing every week so you will have to persist if you suspect something is wrong.
Things do get missed.

Absolutely agree with @Flakeyface
Go see a different GP and demand different doctors to do tests.
And top up on vit D. Nearly ruined me when mine was low. I never knew bones could hurt. Like actual bones...

As you age you stiffen up so they should take that into account for hypermobility syndrome disorders/ hEDS

Good luck with finding the cause.