Undiagnosed for nearly 4 years, need some quality of life back!

Thanks for the reply. So sorry to hear you're suffering too. At the start I lost a huge amount of weight, about 2.5 stone, so I was put on liquid nutrition drinks, which I still take and have gained weight.

I'm in the UK, and the last time I saw a gastro was 2 years ago. I made a complaint against the hospital as they took a year to order a gastroparesis breath test, with no appointments in between, so now they say there's nothing more they can do for me.
I've already exhausted any funds I had going private a couple of years ago, which was just online appointments during Covid, in which the Dr said I could possibly have multisystem dysautonomia, then through them I purchased a parasym to stimulate the vagus nerve, which did nothing. He also prescribed tablets for gastroparesis, not knowing I didn't have it, which led to awful body tremors, diarrhea, and pain.

I did wonder about autoimmune diseases, especially lupus, but not sure how I'd get tested for them when I have no doctor?
Also,.I did have a test for gut inflammation, but it came back negative.

So sorry you're going through this. I know I've had a pancreatic elastase test which came back negative, but I just don't know at this point. It feels as though I'm no closer to a diagnosis than I was nearly 4 years ago. Do you experience constant nausea or just during the episodes?

I'm also in the UK (Manchester) and fed up of the NHS. For almost a year now I have severe vomiting, abdominal pain, major weight loss, alternating constipation and dighreagh, severe tiredness and more. I was referred to specialist but when things didn't move for months I also went private a couple of times for him to put me on the urgent list in Salford Royal Hospital. Had Colonoscopy, Gastroscopy, MRI, Ultra Sound, Pill Cam, Barium Follow Through, all came back reasonably clear. Had stool test done recently, showed minor inflammation. Dr's still being lazy. I'm now 20 and missed almost complete year of college and no idea how i'm gonna cope in Uni this coming year. Been on Liquid nutrition (Ensure Plus) for 3 months now. Spent a week and a half in hospital mainly due to weight. Dr hasn't considered anything out of the box a bit, seems like there is a major problem in the English health system!!

You're right, we've been so let down by the NHS system in the UK, it's broken beyond repair and people like us are suffering because of it. It's like you're constantly Googling to try and find the problem yourself, ,when that's their job!
I think one of the big hurdles here is finding a doctor who actually cares enough to invest the time and effort into thinking outside the box, not just the obvious, which seems to me to be found more in the major hospitals in London.
So you were in hospital for a week and a half and they didn't investigate any further?
I've been to A&E a few times, but they just said if you're under a consultant they should be working to get to the bottom of it. But, what if they're not?
I haven't seen friends or family for such a long time now, I'm so Ill all the time and it's really taking a toll, as I'm sure it is you too. Feels like my life's been put on pause for the past almost four years, and I'm not sure that's going to change any time soon.
GP told me not to come back to him as there's nothing else they can offer me.
I've recently started getting some unexplained yellow bruising on my legs, but when I asked the Dr about this, he said he doesn't deal with bruising. Just at a loss as to what to do next.

Hi Sandy, this is a similar article to what I read that said that there is a type of pancreatitis that doesn't confirm any diagnoses, there is a specific test for these problems apparently;

Also maybe you could look into Shwachman-Diamond syndrome, it is a rare disease in adults, however, it is increasingly diagnosed in adults, I feel that when something is not common they don't look into it because the possibility of it being a rare disease is so slim that they don't bother.

Also, have you been tested for Lupus? This can be tested through a urine and blood sample, I would definitely get tested if you haven't to rule out things.

When I have my episodes I get horrible nausea and usually end up vomiting. I wouldn't say that the nausea is constant, there are days I experience nausea but not all the time. Before I get my episodes I feel very sick, my stomach bloats as if I was 9 months pregnant and then the pains come, they usually last around 15 min and then disappear.

If I read anything that could help you I will be sure to send you the link, I understand completely what you are going through. If you have any more questions don't hesitate to ask.

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Hi its ridiculous that no doctor can diagnose. You need CBC with differentials, thyroid profile Liver and pancreatic enzymes. Lipid and hepatic profile. Hpylori test. Have you ever had endoscopy? Renal function profile. Lymes and other tick born diseases test. You can be bit by a tick and not know it. From your picture of your scalp it almost looks like ring worm. It needs to be cultured. Go to dermatologist for that. I hope this helps. Your primary doctor or GP should be able to do blood tests. There are more blood tests that could be done too.

Hi there, thanks for replying. I've had pancreatic enzymes, liver and thyroid tested and CBC, diabetes and Addison's disease, though it was about 2 years ago. I've been tested twice for hpylori. I recently had a pilcam which showed healing ulcers and a small section of lymphangiectasia which should not be causing my symptoms, though this didn't show up a few years ago on barium meal and ultrasound.

My GP told me that he thinks the scalp lesions are connected to whatever is going on in the rest of my body, but gave me Trimovate, which didn't do anything.
GP seems totally disinterested and I now don't have a gastroenterologist so I'm not sure how to get more tests?

A good friend of mine had similar symptoms and went through many tests also.
She figured out, on her own, she is allergic to Carrageenan found in dairy products.

Just a thought - have any of your doctors mentioned a systemic fungal infection? The scalp lesion makes me wonder.

Sorry you are going through this Sandy1234,

You may want to do a bit of research on Mast Cell disorders. They can affect any system but mostly gastrointestinal, skin, parasympathetic, etc.

Another thing that gets overlooked a lot is Small Intestinal Bacterial Overgrowth. It isn’t tested for a lot and can have a whole host of symptoms.

Unfortunately many doctors are not well versed in rare conditions like Mast Cell Activation Syndrome so it can be tough to get diagnosed and it sounds like you may be without good healthcare coverage at the moment. Unfortunately, due to COVID, there are many more patients out there that may have mast cell disorders that cause multi-inflammatory conditions. Cytokine storms which are a mast cell degranulation situation has been found in those with COVID so more and more doctors are learning about this. There are some relatively safe over the counter treatments like H1 and H2 antihistamines that can help if your doctor were to suspect MCAS. I have also used a lot of steroids over the years which have helped tremendously but also come with risk. Definitely consult a doctor about possibility of MCAS. Testing for it is not easy either, but favorable response to treatment is part of the diagnostic criteria for having it.

Keeping a food diary and list of triggers is very helpful, if you haven’t already.

Again, no doctor here, but I have similar issues like you described and my journey down the rabbit hole started 20 years ago while I was in my 20’s and it has been a tough road. Took me about 20 years and multiple diagnosis to find the right treatments. Doctors threw around lupus, vasculitis, connective tissues disorders, some kind of autoimmune disease, etc. It is frustrating when you don’t know for sure what it is, because you don’t know what to treat it with. It can take persistence to keep going and advocating when you don’t feel heard. You know your body. I hope you can find a doctor that will listen, have compassion, and search for answers.