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

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@astaingegerdm

@sandy1234 - I recognize some of your symptoms.
I have nausea, feeling full, bloating (always), exhaustion and an increase in heart rate with minor effort. I also have on and off mid and lower abdominal pain. I don’t have pain when I sleep.
I think I have a relapse of gastrointestinal autoimmune inflammation, but it has not been confirmed. I’m trying to get a GI appointment.
I had similar problems about 10 years ago- always better if I for some reason was given prednisone. Eventually, I was treated with immunosuppressive meds and recovered for a few years until 2-3 years ago.
It sounds as if most of your symptoms are GI related. Fatigue and exhaustion are common with autoimmune diseases.
How long ago did you see a gastroenterologist?
There must be some explanation for your persistent nausea, pain and bloating.
Has your weight changed?
Has anyone offered trials of any medications- including prednisone- to see if you feel better?
In my case I pointed out to the doctors what I had noticed when given prednisone for my asthma- I felt better and bloating subsided. That’s probably one of the reasons they tried me on Budesonide by mouth- it’s given for intestinal inflammation.

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Replies to "@sandy1234 - I recognize some of your symptoms. I have nausea, feeling full, bloating (always), exhaustion..."

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.