Hello everyone
Just wondering if anyone has been diagnosed with this. ?.I would love to know how was it treated, symptoms and if it did eventually go?. My GP has just given me this diagnosis as an explanation for sudden nausea and strong abdominal pain!. It is very painful!.
I'd love your experiences good and bad . Hope your all as well as possible.
Many thanks
MistyX
Hi misty, before i was diagnosed with Sjögrens my lymph nodes became swollen all over my body. I had pain in my stomach and auxila nodes in particular. I did have to have biopsy and scans etc. It was only after i had rituximab infusions that the lymph nodes reduced, though I still have flares still . What advice/ cause / treatment have you been given and have you contacted your rheumatologist . I hope things start to improve for you 🌸
Hi weathervane
Thanks for your very helpful and interesting reply. Only advice he's given is lots of rest, fluids and paras and that the better times will get longer but it's so painful and making me feel poorly. I'm seeing him tomorrow as he said I could go back if not better. I'm seeing my Gastro Consuktant on Tuesday as I also have colitis. Hope he can help with this. I did do research on it and it said its linked to lupus and colitis!. Sorry you suffered a lot too before rituximab infusions helped. What scans did you have?. Have you had your back op?. Do hope it's helped and your recovery is going well. X
I just wrotr you a long reply and it went into The either !! I had an ultra sound scan , then a biopsy followed by a mammogram and an mri - all was clear. I might be having the scan repeated as I still have upper arm and uder arm pain . I had the back op and all has gone well , im still a bit stiff and sore as he had to remove more of the bone and disc than he thought he would . Its never ending LOL ! I hope your gastro can give advice and help re the lymph nodes and you get some relief 😀😀🌸. Xxx
Hi weathervane
Gosh you had a lot of tests that luckily were clear!. Fingers crossed for your repeat ones. So glad your back op was a success, no wonder you were in so much pain!. Hope you'll be skipping about soon. Lol!. It does seem to be one problem after another with us with no breaks that can get us down. I feel that way with this because of the added pain. See what my GP says tomorrow first!. All the best for the bank holiday and thanks for your replies. X😊👍
Keeping us updated on how you get on xxx
Oh ! Misty that sounds sooo nasty. I have never heard of this condition but thanks for drawing attention and awareness to it . It’s just so unfair that you not only have to deal with Lupus but you also get the other conditions too!!! I wish I could help you feel better.🌻😊🌻♥️
Thank you midge for your lovely reply. I must admit it's something I can do without but we don't get that choice always do we?. You make a difference for being such a lovely friend and I'm sorry at what you are facing too. I see my Gastro on Tuesday so hopefully will get his help. Keep me posted about your news too and enjoy the bank holiday. X
Here's a little update on my post. I saw my GP today who has prescribed antibiotics in case the added pain is an infection. He said I will get benefit in 3-5 days in time for my Gastro appt on Tuesday. I do hope so as pain is so strong and making me feel poorly!. It's tough isn't it when we're poirly at bank holidays!. Thanks for your lovely replies. X
Hello my lovely I’m glad you went back to your Gp yesterday, fingers and everything else crossed that the antibiotics give you some relief over the weekend and that awful pain eases🤞.
Big hugs 🤗🌸xx
Hello Diane
Thank you for your lovely messages. You will be pleased to know that the antibiotics are working and pain much better!. I'll be able to have a good chat with my Gastro on Tuesday about all this!. Hope you are feeling a lot better and will enjoy the bank holiday too. Will email you soon. Big hugs. HelenX😊💚💐
Oh Helen that is good news I’m so pleased.
Yep be in touch soon, take care and hope you are able to have a pleasant weekend now.
Love Diane 😘💕🌺 x
Hi misty , glad to hear you are feeling a bit better on the antibiotics 😀 i hope you are able to enjoy a lovely sunny bank holiday , but don’t over do it !!! 😀😀😀
Thank you weathervane for your lovely reply and bank holiday wishes. Hope your enjoying it too. Always the way though, I've swapped abdomen pain for leg nerve pain as my injections are wearing off now. Can't go mad!. There's always something for us to cope with isn't there. I'll update what my Gastro says on Tuesday. Do hope your back is improving. X
Here's my Gastro appt update. I didn't see my usual Consultant as he'd been suddenly called away that afternoon. Luckily I saw another consultant Gastro who decided I was still getting too many U. C flares despite a new drug Budesomide helping symptoms!. So he's booked me in for an urgent camera test with a view to changing my treatment if they find inflammation. The biologic drugs were mentioned for the first time!. I did ask about Mesenteric lymphadenitis and he said its diagnosed by abdominal ct scan . He said to finish the antibiotics and not have anymore for the test!. Fingers crossed the pain stays away as I finish them tomorrow. On the other hand they may do a scan if I've got the awful pain back and they need to investigate what it is as it's got worse!. Should hear within 2-3 weeks for it. Not a nice prospect but only way to get better treatment!. X
Fingers,toes and anything else that can be crossed! Do hope you don’t suffer anymore pain. To be fare I think it would be good for you to have further testing /scan done then they can really see where and how much inflammation there is and maybe temper your treatment better Misty xoxo 🌻🙋🏻♥️
Thanks midge for your lovely reply. You've summed up the plan brilliantly. I am starting to get abdominal pain again as I'm finishing the antibiotics, just hope it doesn't escalate but proves its right to see what's going on!. It's six years since my last test so due really!. How about you?. Any news about your op?. Hope your having a good weekend. Xx
Hey Misty, Just waiting for a date. It’s supposed to be before July 16th 🤷🏻♀️ On the positive side though it’s sunny 😎 in Scotland can you believe it?! Please keep well xoxo 🌻🌻🌻
Just another update that I'm having the Gastro camera test on 19/6 and been given instructions to stay on 8 mg steroids till outcome. They've also said they'll see me earlier in clinic so fingers crossed I get a good treatment plan from it. Luckily the abdominal pain hasn't come back after the antibiotics !yet. Fingers crossed it doesn't!. Hope your all as well as possibleX
That’s great news Misty!
Will be thinking about you .🙋🏻🌻♥️
Just a quick update to my Mesenteric Post. I've had the Gastro camera test and no nasties found which is fab relief. They have found visible redness/inflammation that's very mild but have biopsied it !. Resukts in a month when my Consuktant will see me and also my GP will have them when I go on the 6/7. It looks like further treatment is needed for my Ulcerstive Colitis as its in the part of colon that the condition can affect!. Also don't now think I've got this Mesenteric lymphadenitis. Pain is better but still affecting me. Will do another post when I know more.
Thank you for all your support and take care everyone in this heat that we're going to have. X
Great news Misty 🌻♥️🙋🏻
Thanks midge. I'm trying to ensure I see my usual Gastro consultant for the results as he started this . Not easy as he gets so booked up. I'm making lots of phone calls!. Any news for you?. Take care in the heat this week. X😊💚👌🏻💃🏿
Hi midge
How are you and how did you get on with all that heat?. Glad it's cooler now I bet!. Hope you've got some health news by now too!.
Just thought I'd let you know I saw my fab Gastro consultant and had good news from my biopsy results. No active inflammation at that time for colitis so he thinks the abdo pain, nausea is pain predominant IBS caused by stress!. He's recommended several drugs to try and I'm back to juggling all my pills and reducing the steroids!. I felt a bit foolish to be honest and disappointed as was hoping for better colitis treatment as had been symptomatic!. I know you'll understand as so often we're left coping with symptoms that don't show up but leave us suffering!. Onwards and upwards I guess. Keep me posted and have a good weekendX
Second Opinion Next Week 😓
Doctor appointment next week - worried.
Never Ending Back Pain
