APS Symptoms

I have a appointment with a Rheumatologist this week. I was diagnosed with APS 2 years ago and am on 4 mg of Coumadin and a ASA 81 mg. My symptoms seem to be more nervous system related . Just wanted to see if any one had these symptoms before seeing the rheumatologist and sounding like I've lost my mind. Nerve endings going crazy on the scalp, facial tingling and numbness, every day my legs from the knee down are so heavy I can barely lift them, tightness in the back of my legs, deep muscle pain in my deltoid muscles of my arm for about 3 months. These are symptoms I have everyday. I just wonder if these are APS symptoms are should I be looking for another diagnosis also. Some of the symptoms are difficult to explain to someone who hasn't had them. I believe I read somewhere in a post that it is possible to have nerve type symptoms instead of the blood clots. I do have 4 cardiac stents but unsure if this was related to APS or bad genes, was before the APS diagnosis. Have had 1 TIA.

14 Replies

  • Do you know if this Rheumatologist is familiar with APS as so very very few doctors are? It sounds good that it is a Rheumatologist and not a Neurologist. They often do not "get" what APS is about with our very thick blood etc.....

    I wonder how often you are doing bloodtests at the lab and if you usually are in your therapeutic range and also what therapeutic range the doctor has put you on??

    To me it sounds as if you are still having symptoms like you are not proper anticoagulated. It is very important to be well anticoagulated. We usually feel good at an INR of 3.5.

    Have you read "Sticky Blood Explained" by Kay Thackray. She has APS and writes about all the different symptoms with this illness. Very good book.

    Good luck with your next visit to the Rheumatologist. Believe me you are not crazy. In that case we are all crazy here.

    Kerstin in Stockholm

  • Hi, where are you located? Is the rheumatologist you are due to see, fully up to speed with Hughes Syndrome/APS. As well as looking at your full history and symptoms regarding this disease, you also need to look at your Thyroid, plus your levels of B12, D and iron. MaryF

  • I am tested every 2-3 weeks and keep my INR from a 3-3.5. Im afraid to go any thinner with the aspirin, if I cut myself Im very thin.

    When I was first diagnosed I read all of the books I could get my hands on, seems like symptoms vary A Lot. I've waited 3 months to see a rheumatologist, her nurse had never heard of APS but the Dr. said she treated it. I'm not going in with great expectations but hopefully she will be up on APS, as my cardiologist and neuro were not at all. Can't wait until physicians in the US include APS in their Conferences and their Continuing Education Classes they take yearly. It might explain some of their hard to treat patients who cant seem to get well.

  • Hi Sue

    I can relate to all your symtoms mostly on right side as I use it more and DVT are right leg.....but I have now justg got a letter from rheumatologist that says spine mri shows nerve root compression in neck and lumbar....both of which cause probs to right limbs so until 24th june appt not sure what is causing what now....

    will keep you posted


  • But prof Hughes also sights case study where patient had APS and spine nerve damage but being property antigoaculated seemed to help both conditions. ....???

  • The APS Action site has a list of US doctors who are familiar with APS.

    Remember to make a bullet point list divided into symptoms ( possibly a timeline?) and questions. It also helps to bring a friend or relative to the consultation. ( I have noticed doctors are less likely to assume a condescending air with me if someone else is in the room.)

    And my 2cents? It's better to wait and drive to see a doctor familiar with APS then one not familiar.


  • When I read Ginas answer to you it seams as if you are in the US. Are you?

    I agree with Gina. We know from our own experience ....... it must be an Expert of APS otherwise we have small chances to be safe and also feel better.

    I do not know how old you are but I guess your life is worth it.


  • Hi

    I also have the same symptoms. The thicker my blood the more intense the symptoms. The live do is more prominent. When I saw Prof Hughes in April I was great. Now I am up & down. I know I am not thin enough but the Drs. Here in the USA do not get it. If I don't get better soon I will contact Prof Hughes.


  • My legs feel EXACTLY the same way. I also have the scalp twitches and what i call "popcorn twitches" because they feel like popcorn going from one area to the next. I would say 90% of my symptoms are neurological. The leg thing is so hard to describe like you said. They feel at some times like they will explode or that sonething really tight is on them. And always kinda weak, numb and heavy in a weird way. You are not alone

  • I was beginning to think I had MS or some other neuro diagnosis. You get tired trying to find the right words to explain how your legs feel. It's hard to put one in front of the other and it is every day, the INR really doesn't seem to matter. The crawleys in your scalp are hard to explain as well. Are you on Plaquinil ? I hope when I see the rheumatologist tomorrow she will suggest it. I'm willing to try it. I am a nurse and walk all day, the leg thing with every step is really difficult

  • I also have the same symptoms mostly down the right side but now it is affecting my left slightly in my legs. However, I noticed you are on asprin?? are you on warfarin at all? I found that with asprin it didnt solve the symptoms much and eventually had to go on warfarin. This I found to be much better for me and I am now in more control. I have my bloods taken every week - if I feel well enough once a fortnight but this I can decide myself as I know when I feel worse.

    Best of luck but you really must get a consultant who understands APS.

    Regards Diane

  • The thing is to be enough high in INR so you feel ok all the time. I suggest you always test every week and visit extra if you do not feel well.

    You can be lucky that they have accepted to test you every week in the vein. Some clinics only test every two weeks or even less. Here in Stockholm we selftest as it is important to always be in range to avoid clots. My therapeutic value is 3.2 - 3.8 at present.

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin,

    It took the doctors years to finallhy admit there was something wrong with me and when they finally did I was really very very poorly. My consultant actually stated that if he hadnt seen me when he did I would not have lasted another 3 months. Because of this I seem to have scared the medics this end. This causes untold problems that if I have to be admitted to hospital as emergency no doctor will see because they are afraid to and do not understand APS.

    On the other hand it also means that my gps will let me self medicate on warfarin as I need and that I can have blood tests as an when I want them. Im trying to do them now every two weeks. It may work if not I can just go and get another in between.

    My consultant refuses to let me self test. He says they are not accurate enough for me so though its a bind I do have to go to the docs. and have my bloods taken out of the vein.

    My INR is the same as yours 3.2 - 3.8 but I cant maintain it at present and it keep slipping to 2.00 not good but I will keep persisting with it.

    Regards Diane - Norwich.

  • Hi Diane and thank you for your answer!

    It must have been terrible for you what you have been through. I do not know in which country you live (I guess England) or how old you are but it must have been terrible what you have gone through and hearing that you had only had 3 month more to live unless you had not seen your Consultant when you did.

    Are you diagnosed by positive antibodies or by symptoms only?

    One thing I do not understand is how your Consultant (does he really understand APS?) dare to let you have that high INR (3.2 - 3.8) and let you decide yourself how often you need to test your INR.

    Have you told him you slip down to 2.0 in INR? What did he say?

    Have you read "Sticky Blood explained" by Kay Thackray. She has APS herself and writes about the different symptoms of this illness. It is very good and informative also for relatives.

    Take care!

    Kerstin in Stockholm

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