Betchets Diagnosis

[Suzywhizzo]

Hi Everyone, I haven't posted in a while, as I have been struggling for 8 years to try to get a diagnosis. My symptoms were similar to Betchets, but as I did not have a lot of mouth ulcers, I was told in 2016 from the Betchets Centre in London, that I did not have Betchets.

Wind forward 7 years, my symptoms of scleritis in both eyes, ocular hypertension, pain all down left side, flares and main pain in left, upper quadrant still persist. Luckily, I was referred to the Amyloid Centre at the Royal Free Hospital, where they found a gene called the TNFA13P gene, also known as A20, in a variant form of Familial Betchets.

I have no idea what this really means and have lots of questions, but I cannot get to see anyone until the end of June. I just wondered if anyone can shed any light on this particular variant. My main problem is my digestive system, as I feel I have a blockage or ulcer in my stomach/ spleen area.

I had a very strange experience in December 2020 when I was Lying on my left side in bed. Something popped/burst, I could feel liquid being released, like in slow motion and I felt severely sick. I could not move, as I had no idea what was going on. After about an hour, I had a bowel movement, felt nauseous all day, but by the evening I felt amazing!!!! All the pain on my left side had disappeared and I had a great sense of relief. Unfortunately, by the morning I could feel the pressure build up again and the pain returned.

Due to all these problems, I went privately to see a Doctor who deals with the liver, as my bloods pointed to this area. He arranged an exploratory laparoscopy, where he found lots of adhesions. He said this was strange, as I have never had a stomach operation or anything that he said would cause this. He cut some of the adhesions, but said I would need to see a Gastro surgeon, as he was getting near the bowel and didn’t want to perforate it.

This is where the story ends and I cannot find anyone to continue the search into an ulcer or find the root cause of the ulcer or pressure build up.

Unfortunately, my private health care has been exhausted, as I only work part time and the search has gone on too long now.

I apologise for the War and Peace message, but I felt I needed to give some history around my story. If anyone can give any advice on Familial Betchets, or the reason for my pain/ pressure in my stomach area, I would be really grateful. Basically I am trying to find a really good gastro surgeon who can help.

Thank you for reading

Suzy

[012703060610]

Hi there - you have certainly been on a roller coaster. I am actually getting that genetic test done this summer due to ongoing fevers. My doc thinks I may have Behcet's but also familial Mediterranean fever. My bowels kicked off all of my issues. I lost 40 pounds in 6 months because I was too afraid to eat. I had upper quadrant pains. I had EVERY GI test done twice. Tests on pancreas and gallbladder too. It took me paying out of pocket to swallow a camera. This is the only way to visualize the small bowel. Long story short, the camera took hours to leave my belly and it is paralyzed. Total hot mess on top of Behcet's and I have one more autoimmune disorder. My Rheumatolgist was totally convinced I had some form of IBD and that my immunosuppressive meds would help clear up. No luck. I really encourage you to explore all GI tests. I am a little more than three years into dealing with my stomach and it is a total life quality issue. I circle the toilet like a hawk in the morning for hours. Please keep us posted. Listen to your body on the autoimmune issues in case you need different medications etc. Personally I use an oral rinse steroid for oral sores and it takes it from two weeks to just one week of pain....I'll take it!

[Suzywhizzo in reply to 012703060610]

Hi, thank you so much for replying. I feel so sorry for the issues you are having, as the GI issues are unbearable and unless you are dealing with them, no one really understands, as we look fine.

Thank you for letting me know about the camera in the small bowel, as I think that is where my issues are.

I will definitely keep you posted. I was sent to the Amyloid Centre to check for Mediterranean Fever like you, but it came back with this.

Take care

Suzy

[012703060610 in reply to Suzywhizzo]

I just started LDN and it is already helping the belly A LOT. Suggest reading up on if you have no idea! I had to beg in the states for it, but seems readily prescribed in the UK. I suffer from a paralyzed stomach so I am on soft food diet. I do bruise easy as well. I found that my daily vitamin D dose turns my urine yellow. I have pelvic prolapse so am doing a ton of therapy there on that. Feel free all to keep asking questions. Nothing too personal. I have to use a an insert to be out and about for urinary incontinence and I have installed a mini toilet in our mini van! No shame here. We do what we have to do!

[Suzywhizzo in reply to 012703060610]

I am so pleased the meds is helping you with your stomach. What is the full name of LDN so I can look it up? Thank you for explaining why my urine is ye, as I take Vit D daily. I agree with asking all different questions, as each of us may have tips to help others . I also agree nothing is too personal when you are living with this illness. You have gone past caring, as you just want good, honest information. Thank you for reaching out and I wish you continued improvement with the meds. Take care Suzy

[012703060610 in reply to Suzywhizzo]

No problem. This article describes LDN (low does naltrexone) and is incredible for so many diseases. It is micro dosing of the drug you use to revive a narcotic over dose. I saw a custom pharmacy in the US. It is very easy to get in the UK and very cheap. I brought this to my Rheumatologist as I am on another forum for Relapsing Polychondritis. It is another great resource site called stuffthatworks.heatlh.....Behcet's has a forum too. It is real patients outlining their treatments, etc. Once I saw so many people were on LDN, I had to ask the doc. He agreed after I sent him all of the research. The article is a little sales pitch for one doc, but it was the easiest post to understand the chemistry of the drug and why it helps autoimmune!

drfabio.com/healthblog/long... 

[Suzywhizzo in reply to 012703060610]

Thank you so much, I really appreciate your help with this. I always find the U.S is ahead of the UK with their medical care!!!

[Polaris_Ab]

Hi Suzy,

I'm sorry for all of the health troubles you are facing. It is very hard to go for so long without a diagnosis. I've also been searching for answers to explain my health issue for years - and also wondering about Behcet's (although I don't get the ulcers).

I seem to have a lot of symptoms similar to yours (e.g. upper left quadrant pain, possible poor blood flow, etc.). I read in one of your earlier posts that you get yellow bruises. Do you also have strangely yellow urine and/or flank pain? (So sorry if that is too personal to ask!) Since I am getting nowhere by visiting doctors, I've been trying to learn from other people's experiences on this website, and also on reddit, and it seems that people who present most similarly to me also have this odd phenomenon of developing bright yellow urine despite adequate liquid intake and no dietary changes or sudden excess B vitamin intake.

Sorry for the strange message!

I hope you are doing well.

[Suzywhizzo]

Hi Polaris-AB, thank you for your reply. They have found this Familial Betchets and like you I do not get the ulcers. All my pain is upper left quadrant and my blood flow on the left side is poor. It’s just bizarre, as I have seen numerous Rheumatologists privately and via the NHS and they said I don’t have Betchets, as I don’t have ulcers, but now I have been told I do have it.

I do get the yellow bruises and I get yellow urine, so I seem to have very similar issues to you. No question is too personal when you are trying to get to the root cause of a long, ongoing illness, that no one can diagnose, so no worries there.

I hope you are doing ok and I really hope you manage to get some answers.

Take care

Suzy

[Polaris_Ab in reply to Suzywhizzo]

Hi Suzy,

Thanks so much for your reply. It must be so frustrating for you to have a semi-diagnosis (w/ genetics), but no full explanation or treatment yet. Hopefully this summer (?) you will have luck in those regards.

For 4 years, I've been thinking (like you) that these health issues are somehow related to poor blood flow. If I ever get a diagnosis, I am going to try to post it somewhere on this website in case it ever may help someone else.

Best wishes,

Polaris

[Suzywhizzo in reply to Polaris_Ab]

Please keep me posted on any updates of the poor blood flow and I will keep you posted if I find anything out. I have a good Rheumatologist now, so I will question her in depth to get as many answers as I can.

Take care

Suzy

[Polaris_Ab in reply to Suzywhizzo]

I will do my absolute best to update you! I saved this post to remind me.

Hopefully we will have answers soon.

Sincerely,

Polaris