They can’t find anything wrong but I’m in pain

[Lumiodes]

I had a bout of diarrhoea followed by severe muscle pain and twitching. It got worse and worse for two weeks then started to get better, and over the past six months I’ve recovered perhaps 60% of normal. The doctors can’t find anything wrong. All of these tests are normal -

Iron (ferritin, haemoglobin, blood count etc)
Vit D
Vit B12 and folate
Calcium
Potassium
Magnesium
Thyroid
HBA1C (blood sugar)
Coeliac
Serum CRP (inflammation)
Anti nuclear antibody (autoimmune)
Rheumatoid factor
Cyclic citrullinated peptide (autoimmune)
CA125 (cancer)

My ESR is slightly high and my eGFR is slightly low but not enough to cause concern. My ferritin is 22 (normal is 15) and they think increasing my iron will help to address these two issues. But there’s nothing to explain my symptoms.

They’ve given me vitamin supplements but it’s making no difference to the pain and twitching. They’re saying there’s nothing left to test. I’m in perfect health. But my muscles are burning and twitching and I can’t walk for more than 30 minutes. Help 😩

Yes I do - most of my work is via Zoom or the like.

@Eyesopenwideawake can we DM?

Of course

@Eyesopenwideawake if you DM me I can reply! Sorry I'm on the app and it won't let me start one?!

I don’t have the money for private and the NHS won’t treat me. Multiple GPs have said I don’t have the symptoms of MS so they can’t refer me. They tried asking the hospital neurologist if he’d accept a referral even though I didn’t meet the criteria, and he said no. His advice was also that it isn’t MS or any other disease that he recognised. He said it sounds like it’s viral. So what more can I do?

OP@Lumiodes see this link www.coeliac.org.uk/information-and-support/coeliac-disease/conditions-linked-to-coeliac-disease/neurological-conditions/?&&type=rfst&set=true#cookie-widget i suspect your acute diarrhoea episode may have triggered other inflammatory responses in your body. Coeliac is an auto-immune condition, when inflammation is triggered it can result in all sorts of whacky weird symptoms that can be very scary at the time ( i have thyroid illness and in a time of flare it creates other problems....i had an acute flare once where i ended up with bad joint pain in multiple areas and felt very dizzy and off-balance).... but it is likely to improve if you can get your system re-settled. Your best bet is to try and get your gut back on an even keel....do you ever take probiotics or other gut support? The gut bacteria is part of your immune system and bugs tend to throw this out so we have to re-establish the good bacteria.

It just seems odd that I’ve had coeliac for 20 years and been absolutely fine, haven’t changed my diet, coeliac is under control - yet suddenly I’ve developed neurological symptoms?

There was an incident about a month before the onset of symptoms where I was badly glutened by accident, but I didn’t get particularly sick and it was a whole month later when I got these symptoms. The gastroenterologist said too much time had passed in between for the two to be related, especially as my bloods show no autoimmune response.

its often a sensitising or trigger event ( or multiple …including stress or emotional events) that sets off a cascade of events….if you have any auto-immune illness you are more likely to accrue others and hospital consultants tend to narrowly focus on their speciality without acknowledging that auto-immune conditions can affect the whole of the body . This event was precipitated by a bowel response so I would put my money on it being auto-immune related. The research that’s being done since Covid is showing how gut health is so important to our overall body health ( I also have CFS so it’s good to see research finally being done!)

Guillame Barre Syndrome? It can develop rapidly after d&v, vaccinations etc and it doesnt always have to be an extreme case.
Mine started after my dentist botched an anaesthetic injection. Face started twitching then down left arm, leg then over to right leg and arm. I had terrible burning, muscle pain and extreme weakness and I thought I was developing MND. I couldnt sleep at night as my feet and legs were either burning, or felt like I had iced water running through and I had trouble walking.

Ive been left with peripheral neuropathy in feet which ramps up when Im unwell but am otherwise fine now but it took a good few months to improve

Were you taking any supplements that contained b12 before it was tested? Inc fortified food products or drinks? That can skew the results, especially in someone with Coeliac disease

No I wasn’t taking anything before the tests. They did every test under the sun for two months before admitting defeat and giving me vitamin supplements just to see if it would fix the problem, which it didn’t.

It’s frustrating that you can’t be referred. My dad had MS and it took them 2 years to finally refer and diagnose. He had all random symptoms the same as you. It affected his eyes and his stomach and his muscles. Would randomly flare in different places and then get better. My sister has fibro and that was the same thing, kept telling her that because her pain was generally always in the same place that it couldn’t be fibro, it’s take her over 10 years to be diagnosed! At one point the dr told her that she was too young to be in pain and pretty much accused her of lying.

ZOMBIE THREAD
I'm deliberately bumping a Zombie thread because I wondered how OP was doing. Are you feeling better, @Lumiodes ? Did you find something to help you feel better?

Nope. No diagnosis. Just got told “it’s not life threatening or you’d be worse by now”. I did improve a lot but still have pain and twitching all the time.

Is walking any easier?

Oh I am walking a lot easier. I can walk several miles albeit in pain. But I’m so stiff and achy and muscles keep twitching. They just keep telling me they’ve ruled out the serious diseases so it’s not dangerous, I just have to live with it.