Undiagnosed illness and ESA

Kayslay

Hello guys first time poster here I don't know how to start but here goes....

Last year June I quit my job to go travelling but a week before my flight I suddenly overnight started feeling pain on the upper right side of my abdomen, along with the pain I felt dizziness/light headedness with bloating/constipation/diarrhea/undigested stool alternating throughout the weeks as well as fatigue. I visited the A&E several times each time turned away with "it's nothing serious"

I've had an ultrasound scan, a ct scan, a bronchoscopy, endoscopy and a colonoscopy and several blood tests and everything came back negative. Though it's a good sign it doesn't help me find what's wrong!

Anyway for the last 8-9 months my doctor has been providing me with fit notes while I go through all these diagnostic tests but since everything came back negative he says it's anxiety, he prescribed me anti depressants and refused to give me anymore fit notes.

I decided to change GP's to a more convenient one closer to my house (my old gp was 30 mins away but that's another story!).

I had my first appointment today and after telling my story to this gp first thing she said was it's anxiety and I should try a stronger anti depressant. The first symptoms I described to the gp was the ones that bother me the most, I said I feel stabbing pain on the upper right side of my abdomen and I feel dizzy/light headedness.

The gp told me to start exercising and I explained how I can't because of the dizziness and brain fog and her reply was "okay that's a different issue you have to raise that to me at another appointment because you only get 10 minutes" .....i was seriously dumbfounded! I mean the first symptoms I mentioned was the pain and dizziness!

Anyway I asked for a fit note and she asked me am I one of those who will keep coming to her to get signed off? Before I had the chance to reply she said she'd only give me a note to cover a month and to take the anti depressants.

Sorry for the extra long rant but what I'm asking here is for advice on what to do about esa and also what the next step I should take regarding my health.

I know for sure my symptoms are not from anxiety, I take the medication in case it might help, I'm not anxious at all, if anyone were to see me they wouldn't be able to tell I'm sick because I put on a front and have sort of adapted to living around the pain, some days are worse than others especially when I have the leaks but I just soldier on. It's so frustrating I have the pain on one specific part of my abdomen but they can't find anything. And I have no idea what triggers off the pain, I could be sitting there comfortably watching TV and suddenly it hits along with the dizziness, of I could be asleep at night and wake up suddenly in the middle of the night with the pain.

I've done a lot of research and found there's a specific gallbladder scan called the hida scan which checks if the gallbladder is working properly, a lot of people online claim every other test they did came back negative until they did this test to check if their gallbladder was ejecting enough gall. I've asked this new gp if I can do the test they refused.

I'm thinking of looking for a part time job and somehow enduring the pain so I can afford to have a private consultation with a gastroenterologist. I'm all out of luck I don't know what to do about the ESA or my health.

Parva

I'm afraid that you're unlikely to get far with ESA given that you have seen two separate doctors who have both not agreed on a specific medical condition.

KxMx

It's the fit notes that are an issue here, not the lack of diagnosis.

I have no overall diagnosis (9 years and counting ) rather a preliminary diagnosis for 3 issues, but no main one.

I have successfully claimed IB then ESA in that time.

It's harder, as even with Dr support and evidence I tend to fail assessments, but come appeal I always win be it at Tribunal or upon re-consideration- my last 0 points medical was changed to 15 points, ESA WRAG for 2 years by the Decision Maker.

I'd take the meds and go back on a month stressing you are no better and need more help & another fit note. Is there another GP at the same surgery that you can see?

tomtontom

If your GP thinks it is anxiety related have they referred you for counselling? Everything you have described could be symptomatic of anxiety, possibly health anxiety, but also many other conditions.

Be careful with self diagnosis - you could be making yourself more ill through worry.

Kayslay

tomtontom wrote: »

If your GP thinks it is anxiety related have they referred you for counselling? Everything you have described could be symptomatic of anxiety, possibly health anxiety, but also many other conditions.

Be careful with self diagnosis - you could be making yourself more ill through worry.

Yes I am having counselling. I'm not counting anxiety out. I may sound cocky or arrogant but I very much doubt it's anxiety because my symptoms are too physical and specific.

Symptoms such as pain in one specific part of the abdomen, bloating, undigested stool, tongue coated white, also the brain fog and dizziness which I try to ignore but it's nearly impossible. Any little exercise I do I become light headed for days. Which really sucks I used to be an amateur boxer and loved working out.

Kayslay

KxMx wrote: »

It's the fit notes that are an issue here, not the lack of diagnosis.

I have no overall diagnosis (9 years and counting ) rather a preliminary diagnosis for 3 issues, but no main one.

I have successfully claimed IB then ESA in that time.

It's harder, as even with Dr support and evidence I tend to fail assessments, but come appeal I always win be it at Tribunal or upon re-consideration- my last 0 points medical was changed to 15 points, ESA WRAG for 2 years by the Decision Maker.

I'd take the meds and go back on a month stressing you are no better and need more help & another fit note. Is there another GP at the same surgery that you can see?

Yes there are other doctors in the surgery she was the one appointment was available for the quickest. Thing is she told me on my appointment to only see her from now on!?

Anyway although I'd like to claim esa my first priority is trying to get better. I hate being judged by people for not working thinking I'm a scrounger. I've worked since I was 17. I really don't know what to do next.

Is it really out of the realms of possibility that I could have a condition that doesn't show up on conventional tests?

Indie_Kid

Kayslay wrote: »

Yes there are other doctors in the surgery she was the one appointment was available for the quickest. Thing is she told me on my appointment to only see her from now on!?

There's nothing to stop you from seeking another opinion. I was told by one GP they can't put me on anything else and won't refer me to neurology. (this had been mentioned by another GP months before) I saw another GP who gave me something else and referred me.

Is it really out of the realms of possibility that I could have a condition that doesn't show up on conventional tests?

No

Kayslay

Indie_Kid wrote: »

There's nothing to stop you from seeking another opinion. I was told by one GP they can't put me on anything else and won't refer me to neurology. (this had been mentioned by another GP months before) I saw another GP who gave me something else and referred me.



No

I really appreciate all of you who read and replied to this topic and I mean this sincerely. It's so hard to get my doctors or anyone for that matter to just listen to what I am saying.

Also to add when I had my colonoscopy on the beginning part of the large intestine where it connects to the small intestines; that area of the small intestine was found to be red and patchy, the camera doesn't go up any further so they took a biopsy from that red part.

The initial report said "ileitis - mild erythema around the terminal ileum"

It's weird but I was happy they finally found something only for the biopsy result to come back negative. :mad:

Kayslay

Do anyone else find it degrading to ask for a sick note? I'm really embarrassed to ask for one because the doctors look at you like you've just committed some kind of taboo.

borkid

Kayslay have the GPs considered ME/CFS? Vareid symptoms may present and all tests come back negative.

benniebert

borkid wrote: »

Kayslay have the GPs considered ME/CFS? Vareid symptoms may present and all tests come back negative.

Of course, it must be Fibro.