Is there anyone out there that has had a swollen Lymnode as a result of the APS?

l have already had a stroke in 1991 which had left scar tissue on my brain that now causes me to have seizures mostly at night , this all depends on what kind of drug they have me on to control this problem. l have been told that T.I.A's are something l will suffer for the remaining of my life l am conditioned now to where l don't even noticed it anymore it only happens while l sleep. When l was younger l have had so many DVT's in my right that the blood could not flow properly to the point that l ended up with uclers (ouch) they stripped the veins out so now l wear a compression stocking most of the time.So l go to see to my specialist in Hamilton Ontario Canada and ask him about trying this new drug in my treatment (Xarelto) turns out he suggests to me that they wanted to do a study anyways for someone like myself to join a study in talking Rivaroxaban so they see the results of course l am all over this information l am sick of taking coumandin. I have told my Doctor of this site he knows of it as well as St.Thomas Hospital this condition is not one of the big problems where alot of money is being invested here in Canada like other issues are due to it being so rare. The Lymnode issue l have now concerns me because l really want to try to this new treatment l want to eat normal food. l have my testing to see what this thing is l see its a normal problem alot people get l just don't it to affect my new treatment with Rivaroxban l don't see my specialist till April the funny thing last time l went to see him l seizured during our conversation ( well its not funny ) these Doctors are busy guys so getting to see them here in Canada , l live over 2 hrs away from this Doctor. l was looking at this site this morning and seen that they are looking for people for the same study over there for the same study that is great maybe this is a good sign of good things to come ....l love this site your Canadian friend Darrell

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  • Hi there Darrell, thank you for taking the trouble to engage with us all with your history to date, I am really glad to hear that the site is good for you. Please do show your doctor the actual charity website also - hughes-syndrome.org/ It is very good for information, and also has many really useful books for sale, which are great for doctors and patients alike. You question about lymph nodes. I think anybody can get these, either due to infection or being run down or a virus, however if they are troubling you, do get them checked. Some people with Hughes Syndrome also have Sjogrens Disease and that can cause swollen glands and things. An an unusual swelling of a lymph glad not normally there, I would probably think to go and get that checked out. Welcome to the site, you will find many others on here with similar histories and you are not the only one from Canada.

    There is also this sheet of information, which has a name, (bottom left) for Canada.

    MaryF x

  • Thanks Mary l have looked at your posts many times your links were very helpful l will show them to my specialist when l see him l have already printed them...thanks again for your very helpful advice even though l have had this all my life l am still learning more...all the best keep up the good work thanks again.

  • Thank you for taking the trouble to give us such good feedback re the forum and charity, it is always good to hear that we are making a difference, if you need any specific papers I can often hunt down unusual things. Also over on the charity website there is a list of useful books for sale. I certainly issued a few to medical staff caring for my own family! All the best to you over in Canada. MaryF x

  • I used to have chronic lymph node swelling. I was diagnosed with mononucleosis, caused by the Epstein Barr virus, 7 times within 14 years. Nowadays, my current doctors believe I had mono and then a series of lupus flairs. Epstein Barr virus seems to have proven itself to be a major factor in the development of autoimmune issues.

    So: in my case, the swollen lymph nodes came prior to the Hughes Syndrome symptoms or diagnosis, and these incidents are now attributed to mono or lupus or a bit of both.

    Hope this info helps. I'm sure your doc will run look tests to confirm the Epstein Barr virus ( back in the day it was called the " mono spot," ) or lupus or Hughes.

    Good luck.

  • Wow GinaD thanks you just gave me something else to investigate on my own first just to check out why l am feeling the way l am before l see my doctor so l have an ideal what educated questions to ask weather or not l should have certain tests done.l have had just about every tests going that l know so this is interesting information Lupus in in my mothers side of the family even though l don't have Lupus but l do have APS l am thinking maybe its a drug l am taking for seizures called Dilantin that may be doing it however,doctor yourself with a doctor is good thing l thing l think thanks again GinaD

  • Good luck, and tell us how it works out. Dont forget to make a list of questions and, ( as Mary frequently and wisely recommends,) a blullet point list of symptoms Doctor apts can be stressful and having things written out makes it less likely that you will only remember as you are getting in the car for your trip home that important thing you meant to ask about.

  • Hi I have APS or Hughes Syndrome as it is also known as, I also have Sjogrens Syndrome which is dry eyes, mouth and arthritis. My lymph nodes are very often swollen as are the glands in my neck, I would advise you to get this checked out by a Rheumatologist to put your mind at rest. Good luck and keep well regards CaroleJ

  • Thanks Carol-J Sjogrens hmm interesting....well just logged on and having my morning coffee here in Canada its only 9:15am just finished watching my daily news of the day (what a life ) l will check that thank you l do already have an appointment to see my Rheumatologist coming up l will be getting blood work before that anyways lets see what tree branch this my APS takes my next ...chow :)