Sticky Blood-Hughes Syndrome Support
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Update on tummy trouble and new diagnosis

Hello again! I finally had the endoscopy on Tuesday and was told I have a large ulcer probably from the NSAID I've been taking for years for osteoarthritis. Also, while the tummy stuff was going on my right hip started giving me a lot of trouble. Not moving properly, severe pain in the groin and outer thigh. All started early December and by February I could no longer walk my big dog or move freely. Getting in and out of chairs (all I do at work all day in Kindergarten), bending down causes pain. It all came on so very fast and go so bad very fast. I've been using a cane for 2 weeks but it's not helping at work so I bought a wheely walker to try next.

When I don't know who to go to for a doc I always make an appt. with my neurologist because he is so wonderful at diagnosing my weird stuff and I've been with him for almost 20 yrs. now (I tell him I've known him since he had hair and he chuckles). I had an MRI done of my hips and it was the most awful test I've ever had because the pain in my right hip and leg from laying there still was so unbearable I asked for the test to stop so I could get up and move (I'm no wimp either but it was horrible). I saw the neuro a couple days later and it now turns out that I have what is called AVN (avascular necrosis) in both hips (femoral heads) - meaning they aren't getting any blood flow from inside the bone and are dying. I am needing a total hip replacement on the right now at age 53 and will need the left done when the pain moves over there. I do not know if the lack of blood flow inside the bone is related to the APS since I mostly clot in big arteries.

So here we go on another adventure. I go to see a private orthopedic surgeon on Thursday and hope he will help me even though I'm on the blood thinners for the APS. It's been a big deal before but hopefully now things have changed.

Will keep you updated! Everyone hang in there please. I've gone for almost 10 years now without any major APS stuff happening (strokes, PAD, etc.) It does level off sometimes. Just take each thing as it comes and get as much info as you can and keep in close touch with the group for support. It works for me and it will for you. Will ask all who pray to throw in a few for me about this ulcer healing and the hip issue (I'm in a great deal of pain). I pray for all of you too. Hugs, Laurey

11 Replies

Hi if I was you, I would see a Rheumatologist as well if not first, they know a lot about or at least should know about Hughes syndrome . I have some Osteo necrosis, caused by Hughes syndrome in my right wrist , also padgets disease are you taking something for your stomach problems?

You need someone who knows about blood clotting, if you need an operation, that will have to be addressed as well, so save time see a rheumatologist first

Good luck


Dearest Daisy - thank you for your comment. After my neuro gave me the AVN diagnosis he called my Rheumatologist and I was seen the next day. So all hands are trying to work together even though they are not connected insurance-wise!

As far as the ulcer goes, the GI people just do the test and tell you what's wrong - now I have to wait for my primary care doc to tell me how to manage "the beast" (which is what I am calling it). LOL. In the past 2 weeks my vomiting and stomach upset has calmed down. I have a pretty good handle on what to eat, in what order, and at what time to help but I'm sure there are medical ways to handle this too. I can't get in to see my primary until 5/17 though so I will muddle along and take each day (each meal, I mean) at a time and pray for the best. I am just so happy to know what is wrong and to know that it can get better. As we all know - when you don't know what's exactly wrong my mind was wondering all over the place (and all over the internet) and I was going to scary places. So, even though this is not wonderful news to some folks, to me it is!

Take care and thank you for sharing with me about your wrist sweetie. Hugs, Laur


Hi there, this all sounds very painful, and I am pleased that you were able to go to somebody you trust and get to the bottom of it, this has happened to other people and it is something that Professor Hughes himself has written about.

Please do let us know how you get on. Mary F x


Dearest Mary F - thank you so much for the wonderful article! What a blessing!

Hugs, Laur


Keep us posted, I hope you feel better soon. Mary F x


Sorry to hear that you have even more to contend with but good to know that you have a great doctor supporting you. Keep in touch with us and your progress x


Thank you Lissylou! I will let you know what the orthopedic says on Thursday. Hugs, Laurey


I want to say thank you too to Lynette & Kay for putting this online support group together so we all can share and get information. In 1997 when I first started searching for a diagnosis for my APS (after almost loosing my arm and leg to clots and strokes too) there was nothing like this available to me. It was hard to research but I made my way around and eventually found people "in the know" especially Lynette back then when we were both on another support forum. She told me about Hughes Syndrome and I had to tell my rheumatologist and he got hooked on the website after that. We all are so blessed to have each other and to have this outlet for the people just starting to find out they have this. Hugs, Laurey


Im not sure if you are muddling us up with another support group because there is no one with the names you mention on this group which is run by the Hughes Syndrome Foundation in London on the HealthUnlocked platform and was started around 21 months ago.

I do agree with you however on the need for this type of support media and I thank you for your lovely comment. x


Dear APSnotFab: I'm sorry if I was confusing. I meant Kay Thackary (sp?) - they ladies I mentioned were in the "old" group - which became this wonderful group 21 months ago. I just assumed they were still with this group. I am sorry to mix up stuff. I am just so grateful to ALL of you here who answer questions and support each other. Hugs, Laurey


Hi Laurey

Just wanted to wish you all the best for Thursday and to let you know I'll give you in my thoughts and prayers.

I wish I had such a good relationship with my neurologist - yours sounds lovely

Take care x


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