Undiagnosed illness and ESA

bemc

Look into POTS (Postural Orthostatic Tachycardia Syndrome) - when you look at the symptoms it might not fit at all but just worth looking into, seeing as you mentioned dizziness and brain fog.

bll78

Hi I can't help with the ESA bit but may be able to with the other bits.

For the colonoscopy mild erythema literally means red patch (sometimes asscoiated with coldsore virus). They took a sample and found no cause for it. This could well be a red herring if you think about your skin a mild red patch may mean nothing.

As for the gallbladder theory it doesn't really fit the symptoms. I had a gallstones and one stone was the size of a malteser. The main symptom was acid/indegestion and reflux after eating (especially anything with fat). When the gallbladder became blocked I was in agony and passing white stools. I never had brain fog or abdo pain similar to the type you describe.

I do however have IBS and the symptoms except brain fog seem similar. I do get brain fog though with another condition when I'm exhausted. Are you sleeping ok?

I would suggest that the GP is unlikely to fund anymore tests as you've had thousands of pounds worth with nothing discovered. I can understand why a GP is now saying no more fit notes as there's nothing but what you say as evidence, and anything too serious would have been found by now in the blood test scans etc..

At lot of people have undiagnosed conditions I myself have had one for 16 years but the tests results are positive it's just the combination of problems that won't fit under a diagnosis. So benefits agencies have something to work with.

I can't see how a private gastroenterologist will be able to do much more even if you pay. Whatever the issue is, it isn't getting worse (i.e after all these months you've never ended up in hospital). Therefore I think it might be one of these things you just have to learn to deal with. Getting a job may help a bit. I'm disabled but work, and find being occupied does me the world of good. Who wants to sit around all day worrying?

If god forbid it does get worse then the benefit will be there will be something there for the GP to see. However by then you may be trapped at home, so whilst you can go out and enjoy yourself, and try not to dwell on it too much.

KxMx

OP has had tests but I don't think they have been extensive, nor do I think a GP is sufficiently qualified enough to care for such a case.

I would ask for a referral to a specialist and see how you get on. Gastro and/or Rheumatology come to mind.

It's no guarantee mind, i've been seeing specialists under varying departments for 9 years to no avail, even an emergency hospital admission last year hasn't moved me any further forward really.

rogerblack

bll78 wrote: »

I would suggest that the GP is unlikely to fund anymore tests as you've had thousands of pounds worth with nothing discovered. I can understand why a GP is now saying no more fit notes as there's nothing but what you say as evidence, and anything too serious would have been found by now in the blood test scans etc..

Because before a disease is discovered, it doesn't exist.

Better_Days

OP, what's your sleep like?
Do you experience unrefreshing sleep, insomnia or sleeping most of the day?

Are you intolerant of alcohol?

When you engage in physical, cognitive, emotional activity is there a delay in symptom exacerbation? That is - is the full effect of activity on symptoms not felt immediately?

Do you feel absolutely ghastly after activity? For example how you might feel if you have flu?

Don't lose heart. I know what it is like to have a long road to diagnosis. It took me 4 years to get a diagnosis of ME by a NHS Consultant (and later confirmed by two other consultants), by which time I'd had 'treatments' that made my symptoms worse. IME some doctors assume there is nothing wrong or the symptoms are psychological if tests come back negative.

Try a different GP at the practice, and keep trying until you find a GP you like.

faerielight

I have m.e , fibro, osteo arthritis and autoimmune hypothyroid it took me a long time to get diagnosed too. I was self employed and my dr refused to sign me off. I spent thousands on private drs , tests and suppliments. the illnesses affected my digestive system and and my symptoms got put on mental health (anxiety), the NHS failed me on so many levels, misread test results when it turned out that I had had glandular fever a year before before which was when my health went wrong. Things came to a head when my bowel perforated from a bowel blockage and the pain was so agonizing but A and E put my symptoms onto mental health and refused me an abdo scan for 5 days and they only took me seriously when I vomited !!!!. I fell into a coma and they had to give me a colostomy and I fought for my life in ICU for a month. I'm telling you my story to encourage you to keep going for an answer. Doctors do miss things, it happened to me. I am lucky to be alive but all the damage of the sepsis that almost killed me cost me a lot..I don't have much bowel left and I'm waiting for my 5th bowel surgery now, the bag was reversed but all the scar tissue and recurrent hernias is a lot to deal with, plus the PTSD I suffer with now from all the trauma of not being believed.. keep fighting to get to the bottom of this. whether you have to get a loan to pay privately or use your local MP to help you fight the system, do what it takes to get some answers.I wish you the best of luck.

Kayslay

Hi all thanks for the replies I will reply to you all individually later on.

One key symptom I forgot to add is that I get these random bouts of fever which feels like when you have viral infections.

Also exercise and physical activities.... I get brain fog/light headedness for the next 5-6 days after I exercise.

And about getting a job... I literally can't predict when I will get the brain fog/dizziness, when I get these just walking straight is a tough task in itself, the abdominal pain I can endure but the light headedness is what destroys me.

Kayslay

faerielight wrote: »

I have m.e , fibro, osteo arthritis and autoimmune hypothyroid it took me a long time to get diagnosed too. I was self employed and my dr refused to sign me off. I spent thousands on private drs , tests and suppliments. the illnesses affected my digestive system and and my symptoms got put on mental health (anxiety), the NHS failed me on so many levels, misread test results when it turned out that I had had glandular fever a year before before which was when my health went wrong. Things came to a head when my bowel perforated from a bowel blockage and the pain was so agonizing but A and E put my symptoms onto mental health and refused me an abdo scan for 5 days and they only took me seriously when I vomited !!!!. I fell into a coma and they had to give me a colostomy and I fought for my life in ICU for a month. I'm telling you my story to encourage you to keep going for an answer. Doctors do miss things, it happened to me. I am lucky to be alive but all the damage of the sepsis that almost killed me cost me a lot..I don't have much bowel left and I'm waiting for my 5th bowel surgery now, the bag was reversed but all the scar tissue and recurrent hernias is a lot to deal with, plus the PTSD I suffer with now from all the trauma of not being believed.. keep fighting to get to the bottom of this. whether you have to get a loan to pay privately or use your local MP to help you fight the system, do what it takes to get some answers.I wish you the best of luck.

Wow sorry to hear that absolutely terrible.

I am continuously fighting but it's really disheartening being told it's all in my head. It's come to a point where some of my friends say I need to get out more and it's because I'm not as sociable as I was.

Little do they know the reason I'm not sociable as before nor do I go out as much is because of the pain.

merlin68

Kay you dont have joint pain, or happen to be very flexible do you?

Mojisola

Do your symptoms fit -
http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/