New here, questions about aches and pains

I'll make the background information short: I am a 30-something woman who started having leg pains in 2011. I was given NSAIDS and blown off by the doctor, until I had a mini stroke later that year. Even then, I was treated horribly by arrogant neurologists (my least favorite type of doctor) who insisted I was having psychotic episodes. Eventually one of them told me to see a rheumatologist who tested me properly for Hughes (2 positive tests 14 weeks apart gave me my diagnosis) The neurologists kept saying I was negative because they were only testing the beta 2 glycoprotein instead of the LA and full anticardiolipin panel. I can only imagine what would have happened to me had I continued to remain untreated.

I am currently taking Plaquenil and aspirin, along with a calcium channel blocker for my secondary Raynaud's and an epilepsy pill for my nerve pains. My rheumatologist prescribes a round of steroids whenever I'm feeling particularly bad, and I'm wondering if I need a hematologist instead?

The Plaquenil is helping, but I still have memory lapses, joint pain, and sometimes leg pain. I have been reading about everyone getting their INR results, and that was never suggested to me. I have also begun to get bad headaches often. Can all these issues be related to the Hughes? How do I know if my condition is being properly controlled? I have only been diagnosed since September, so I'm still in the learning process.

9 Replies

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  • Hi I totally agree about neurologists, I think we need a poll about how many have been really helpful.I may suggest it.

    INR are for people who are on Warfarin, too see if they are having too much or too little Warfarin. It doesn't work if you are not on it as it just a test for that drug, Sorry if you already knew that.

    The medication you are on plaquenil and Asprin are for Hughes sticky blood. Rheumatologist

    Also see Hughes patients for blood testing.

    This is only my thoughts but if I were you, I would ask for a second opinion, only because you have had a clotting experience in the past.

    Please see other options as this might only be me.

  • I guess I don't know how the doctors decide who gets warfarin and who gets plaquenil/aspirin. Is there any method that helps determine how thin someone's blood should be? I hear all these success stories about people feeling better with treatment, so I suppose I maybe expected too much. I'm also terrified of having another TIA and I want to be sure it won't happen again.

  • Hi

    I agree regarfing Neurologists, in general. I have found them arogant and totally unaccepting that APS even exists. that said, the first one I saw was the Dr who first diagnosed me with Hughes.

    If you are having mini strokes and TIAs, and you are positive for APS, I think you should be pressing to be referred to an APS savvy consultant as my view is that you should probably be on anticoagulations, such as Warfarin or Heparin.

    Best wishes.

    Dave

  • Hi Momtomany,

    I agree with Dave and you that neurologists have difficulties in accepting APS and miniclots.

    It sounds like you need anticoagulations!

    Take care! Kerstin

  • I agree neurologist are just worthless for Hughes. I went to several neurologist for 8 years & they did nothing but give me drugs that made me worse or sent me to the hospital. My husband & I finally went to the Hughes center in London. We saw Dr. Khasmashta. He tod me neurologist are the dr. Not to see. I have never been to a rheumatologist, but I did recently see a hematologist. I told him when I took my blood pressure med. I would get leg pains & cramping in the middle of the night. All the other drs. Never could tell me why. He was able to tell me, that this particular medication affected my autoimmune system. My opinion is that you have only 1 body & it would not hurt to see one for another opinion. Listen I learned the hard way. I am in a wheelchair & walk short distances with a walker. My symptoms started similar to yours & if I had been treated years ago I may not be in this situation. Go see the hematologist, the rheumatologist may be missing something. Remember everyone's body works & reacts different than others. Listen to yourself. Designer16

  • First of all a big welcome to this site and its great that you have found us and landed here.

    Your symptoms are suggestive that not everything is being well controlled and perhaps the blood s still a little sludgy. Remember Aspirin is an anti platelet therapy so works in a different way to warfarin as does Heparin to warfarin.

    Not all Haematologists are fully understanding of the condition either so if I was in your shoes I would be looking to see one of the APS specialist that are on the list that the HSF have compiled on their website. They have shown a proper understanding of the condition so if you can be referred to one of them you will know whatever they advise will be something you can trust. You could also consider the private route to London Bridge and see Prof Hughes or Khamashta. Let us know how you are getting on. X

  • It seems a real shame to me, both for patients and the medical profession, that in general on here we hare such negativity regarding neurologists... When you talk to doctors or members or the public, it seems really obvious that sticky blood flowing through an organ as sensitive as the brain would cause at least nasty headaches, let alone everything else, or neurological symptoms.. whey they refuse to be able to in the main understand this... beggars belief. I hope some retraining of their entire profession can go on soon. However I am aware that one or two have been really good for some patients. Mary F x

  • I suppose I should have mentioned that I'm in The States. I am so envious of everyone who was fortunate enough to have met with the master himself (Prof. Hughes)! If I wasn't fearful of such a long flight, I'd love to be able to meet with him myself.

    Designer, what led to you being in a wheelchair? I am particularly interested because of my initial symptom being leg pains.

    I am so grateful to have found this group. I have learned a wealth of information by reading the blogs and questions, and of course it's wonderful to have people to chat with who understand our disorder. I will probably obtain a second opinion but I imagine I will be on a long wait list so it probably won't happen anytime soon. Thank you all for answering my questions and I look forward to learning as much as possible about Hughes.

  • Hi, I am in the states as well. It took me almost 2 yrs to be diagnosed. I tested positive for anticardiolipin antibodies twice 8 weeks apart. I HAD 2 miscarriages, a clot in my kidney, spinal fluid build up on my brain. i suffer from migraines, pain in my legs everyday, pain in all my joints. Because of the spinal fluid building up on my brain i can not take steroids anymore. I am blessed to have a neurologist that actually knows a lot of about APS(Hughes). I see a Rheumatologist, Neurologist, Primary Care Doctor, and once a year I see a Hemotologist. I was on Plaquenil and Aspirin until recently I was changed to Chloroquine 250mg. I got a second opinion from a Rheumatologist. It just so happens that my Rheumy has APS(Hughes) and my second opinion was given t me by her RHEUMY. I can try to help as much as possible with stuff in the states. They really don't have much belief in the disease. When i go to an appointment I go with info about the disease in hand. Unfortunately we sometimes have to educate the doctors.

    Jenn

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