APS specialists

[Switch81]

Is there a link to U.S. APS specialists? I'm hoping there is one in Alaska. Thanks.

[Scottc]

I am looking for one in Louisiana or close but if you here of any specialist in the United States let me know. I hope there is one close to you in Alaska.

[MaryF Administrator]

HI, many from the USA are on here, so people do swap information, there is also some useful information on here: apsaction.com/research

MaryF

[Britchic in reply to MaryF]

I’m looking for an APS specialist in America (I live in PA) and the link here is not working. Can you please recommend a website or any doctors that you know of thank you . Just wanted to add this is the most amazing helpful website and has been such a comfort to me reading so many people who have the same experiences since I felt very isolated over the years I just couldn’t understand what was wrong with me. I’ve been rejected by so many doctors and only recently was diagnosed with a PE - I’d been having a lot of pain in my side and have been doubled over I was tested for everything from appendicitis gallbladder or kidney stones but they couldn’t find anything . My Gastro thinks it was probably a mesenteric blood clot Since they scanned my legs and other places and couldn’t find the original source of the clot. Have you heard of anybody else having a mesenteric blood clot (Jamming my excruciating pain last year they did an endoscopy to rule out a stomach ulcer and confirmed I did in fact have celiac disease. Now I feel that is been my focus on this but honestly all my symptoms since I was a young teenager lead me more to APS. My daughter turned 13 and then was having a POTS symptoms - listening to the rheumatologist diagnose her made me realize this is exactly what I had been suffering as a teenager . Since I have been on blood thinners I have felt so much better - But the oncologist has talked about stopping my blood thinners since I had only had one blood clot episode she is not very approachable and I haven’t talk to her about my thoughts of APS. I feel like most of the focus is now towards the celiac disease but for my daughter I really want to get all this information together since I don’t want her to suffer all her life as I have . A few years ago I was told I had factor iv Leiden and I discuss this with the oncologist who wants to take me off the blood thinners but she said it only gives me a 7% increase in blood clots which blows my mind because guess what I just suffered one!!! Yet she is saying the factor iv Leiden doesn’t increase my risk much. I am waiting to have my daughter tested for factor iv Leiden but I keep putting it off because I don’t want her to have it!! She is already a little resentful that she probably has the celiac she has now been gluten-free for the last four years and her rheumatoid arthritis improved due to this. Sorry I’m rambling! I am often all over the place with all the symptoms - About seven years ago I felt my body had a complete shutdown the doctor told me it was fibromyalgia but I managed to get an appointment with a neurologist because I was told so many of my symptoms were like MS - I was having muscle spasms from head to toe I was overheating was suffering terrible tinnitus and dizzy spells and migraines, Felt the pain deep in my bones like an ice heat all at the same time , I also have degenerative disc disease which causes me so much pain in my neck and back . I’d never felt so sick in my whole life . The neuroligist just walked in the room and said well at age 45 you’re not exactly a spring chicken we all have aches and pains and 45 Is too old to have an onset of MS. I had waited for six weeks for that appointment to be dismissed before he had even sat down at his desk . My confidence and specialists plummeted and honestly I have suffered so much in the last seven years but not really wanted to get any help because I feel no doctor understands. However as I say since being on the blood thinners I can feel a marked improvement in my health

[KellyInTexas Administrator in reply to Britchic]

If you are close to NJ border, call Rutgers and ask for Hematologist Dept. Or call dr Thomas Blom in Princeton. ( Hematologist) he knows perhaps who call at Rutgers - in New Brunswick.

A scan will show a mesenteric arterial clot.

You may be having smaller bowel vascular clotting. ( not arterial.) mesenteric ischemia. Vascular “ congestion”. Paralyric ileus.

[Wittycjt]

Go to HSS.com, look for their phone number and call to see if they can refer you to someone. They have a dr there that stays involved internationally and they may be able to assist you. Much luck and let us know how it goes.