I am not sure if any of this is related to the antiphsopholipid diagnosis I was given a couple years ago or not. But does anyone else ever have this happen? My primary care doctor has done numerous blood tests for many different things, including lupus and goodness only knows what else, and everything has come back normal. I have had problems in the past with my potassium level dropping but that has been quite well the past few months when she has checked it and I do take medication every day for that. I am also a diabetic. I really don't know who or where to turn for help. Any advice would be greatly appreciated.
Leg swelling and pain, also constant ... - Hughes Syndrome -...
Hughes Syndrome - APS Support
Hi, where are you located? And also what medication are you on for Hughes Syndrome/APS? If you are in the UK there is a list of specialists that your GP can refer you to with ease, and if not in the UK often members or ourselves as Administrators can help you further. Swelling of the legs can be for a number of reasons but does need checking out. Please be aware that the charity website carries a number of books for sale which are informative both for yourself and your doctor and Professor Hughes himself regularly writes about the trio of disease which are Hughes Syndrome/APS, Sjogrens Disease and
Thyroid problems. Clinicians frequently miss Thyroid problems as the tests are unreliable
and in my own opinion the training for diagnosis poor.
Headaches can occur of course for a number of reasons, but certainly if the medication is not quite right headaches with Hughes Syndrome/APS are far more likely to be a problem. MaryF
Actually I am not on any medications for the Hughes Syndrome/APS at the moment. The hematologist is just monitoring me. I live in the United States and I really don't think my GP knows a great deal about the whole APS thing. I did make an appointment this coming Monday with my hematologist to discuss things with him. I will check into the charity website and look at the books. I do have a Thyroid problem as well. I had a partial thyrodectomy due to a nodule on the right side many years ago and take medication daily. I guess at this point I am just totally frustrated at feeling so bad and have no answers as to why. It is just such a chore to get out of bed in the morning and do anything at all. Between the cramps on the legs and the headaches, life is really hard.
Thank you for your comments Mary.
We have quite a few members from the USA on here, hopefully they can help you if you say whereabouts you are, in the mean time there are names on here you can contact: apsaction.org/ It is important that you get help. Many people on here are on anticoagulants of one sort of another which relieves their symptoms and makes life safer, some like myself get by on Aspirin, and others also take something for the fatigue. MaryF
I'm down in West Virginia and was diagnosed by a doc in Ohio.
Where do you live. I live in New York City. I seem to get what seem like sinus headaches and it almost seems like I get at least one a week and it lasts for a whole day--unpleasant. I'm also getting leg pains--specifically in my left leg muscle-calf. I have APS and undifferentiated connective tissue disease with an ANA of 1280--with a stroke in March. I'm on Plaquenil and Warfarin. My lupus test comes back normal but they test me every few months to make sure I'm not developing anything else. I wish you the best.
I live in Pennsylvania. I do get sinus headaches, but the headaches I have been getting the past couple months are true migraines, complete with the sensitivity to light and sound. It seems like I get one at least once a week and they have been lasting 2-4 days with nothing getting rid of them, except a trip to the local emergency room for shots of strong pain medication and I don't want to have to keep doing that. The leg pains I am having are mostly in my leg muscle calf also. That is the leg that I had my total knee replacement done on. I have been back to my orthopedic surgeon to have it checked out and he did do some surgery on that knee in July to remove some scar tissue, but the pain in the calf is still there, if not worse and nothing I do seems to ease it at all. I am just so tired of being in pain everyday, all day long. It is really interring with the way I live my life. I do have an appointment with my hematologist this coming Monday to discuss things with him. I am praying he can guide me in the right direction.
Is the swelling around your ankle? In nursing school we were taught this is sometimes a sign of kidney problems (your potassium issue might cause this) or cardiac issues (heart failure in early stages may present like this). It is likely not related to APS...
And few MDs know a thing about Hughes. I am near DC and a NEUROSURGEON spotted it in me by my skin. I'm mid 50s and had been rolling up my sleeves and pointing for 30+ years!! And nothing! This guy says offhand, "you DO know you have Hughes, right?" Me: huh? This has a name?!?! Him: "Good God, and you being a nurse! Who in the He** takes care of you?" Me: "No one apparently..."
Lesson: be your OWN advocate. Be relentless!
I do have swelling in my ankles but also in my lower legs. The only way this was found in me was I was scheduled to have the total knee replacement and my Pt/Ptt came back very high and the ortho wouldn't do the surgery until I was seen by a hematologist. The hematologist did the lab work and said that I had Hughes/APS, but didn't put me on anything, just said I would need to be put on a blood thinner for 6 weeks after any surgery I ever had. That was it. He never even explained anything to me. I had to look it up on the internet to see what it was. He has since left town and someone new took over his practice. I go to see him this Monday. I have a list of questions for him that's for sure!
I live in Nebraska and see a rheumatologist in Omaha. He diagnosed me. I love him. He takes time and listens to me. I also have a great neurologist in Omaha but I only see him once a year or so.
I am supposed to be referred to a rheumatologist, but have no idea when. I am really hoping it is soon and I can get some answers. This is really driving me crazy!!
Where do you live Becca?
make sure it is a rheumatologist who understands Hughes Syndrome/APS and the associated conditions. MaryF
I never thought of that before. I will have to call my GP and tell her that. Thanks for the tip Mary
You could ring one of the names on here, and ask if they know of anybody nearer, also try putting a question on the forum asking if anybody knows of anybody in your area, people have found care using this type of approach, best of luck to you: apsaction.org/
Hi, I guess you have already read the books written about APS available here on the Hughes Syndrome Foundation charity website. I prefer "Sticky blood explained" by Kay Thackray. She has APS herself and that book is very good.
If you have APS you must be on a bloodthinner.
Best wishes to you and hope you will soon find your APS-doctor and feel a lot better.
Kerstin in Stockholm
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