Over 3 years no diagnosis, lymphangiectasia PoTS??????

[Lennon_21]

Hi there.

it's now been over 3 years with no diagnosis. I've been pretty much bed bound since a quite sudden onset of symptoms, which include upper abdominal pain, extreme nausea, fatigue to the point where i can barely move, heat intolerance, flushing, lesions on my scalp and a wide variety of other random symptoms. I waited a year for a breath test to show I didn't have gastroparesis, as I feel as though everything gets stuck and when i gently massage my stomach i get a quite loud get whooshing sound of air bubbles. I had the results of a pilcam sent through the post back in March, which showed intestinal lymphangiectasia and a healing pyloric erosion. It was at this point, before even speaking to a doctor about the results that they discharged me from their care.

I have also been taking my blood pressure three times daily as I've just had a first phone consultation with a cardiologist, who asked me to do this. 5 to 10 minutes after standing my blood pressure is elevated by 30 to 50 beats per minute, and sometimes displays an irregular heartbeat.

I just don't understand how I'm still in this situation over 3 years later, and why this is affecting every aspect of my body? I don't have the money to go private but every appointment or test I've had done on the NHS has been an uphill struggle to get done, and my complaints fall on deaf ears. I was 19 when I fell ill and I'll be 23 this year, and haven't been able to move from my bed. From what I can gather online lymphangiectasia is extremely rare and can be either primary or secondary, but I don't know where to go from here!!! Any help or suggestions would be greatly appreciated!

[specialmom]

Gosh, I was going to go to a galbladder issue as I have had very similar symptoms based on GERD and galbladder issues. I changed my diet and lost some weight. But I was literally miserable and plagued with these same type of issues for quite a while.

Three years is a tremendously long time to suffer.

Intestinal lymphangiectasia does appear to be rare. It's diagnosed by biopsy. The pilcam gives a visual but biopsy is usually indicated. I would think they need to do this for you to know. Your life is impacted in a debilitating way. IF this is going on, it CAN be treated by finding if there is an underlying cause they can treat. Diet changes can help but you need guidance and surgery can change the course of things which based on being bed bound, while I hate surgery, that would be preferable than this current situation! They say it is the GERD that possibly caused this intestinal lymphatic damage? Are they effectively treating the GERD?

[Lennon_21]

Hi, thanks for the response.

I have been told that I don't have GERD, and no inflammation in the gut, other than this. I started off at the GP years ago and tried Lansoprazole and Omeprazole, etc, but they did absolutely nothing to relieve symptoms. I had a barium meal about two years ago and an ultrasound, and MRCP, but nothing was found on these. So i'm not sure if the lymhangeictasia was missed or if it's developed over the past few years?

I'm not on any medication, just drinks to keep my weight up as when i first got ill I lost so much weight, and sleeping tablets to help me sleep through the pain and nausea. I've tried all antiemetics but none of them helped. I'm now worried that if i have to go back to my GP to start the whole referral process again, as my gastro discharged me, it could be the best part of a year before I even get any kind of information about the lymphangeictasia, and it could be getting worse in the meantime.