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    Old 03-12-2004, 08:44 AM   #1
    Liseesmom
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    Smile New Here with APS- Hughes Syndrome

    Hi Everyone!
    Any APS'ers out there?
    I am 35 yrs old and new to the board. Briefly here is my story. Thank you for reading. Despite the diagnosis, I feel very relieved to belong somewhere finally!

    All my life I have had weird tingly sensations as well as Mitral Valve Prolapse. Always written off to anxiety.

    At 30, I had an uneventful pregnancy with my daughter. Five months after her, I began getting huge angry bruises all over my lower body, painful burning hands and feet, fatigue, angina and shooting heads pains and weight loss. Thousands of tests later including a bone marrow biopsy, everything was normal except a bone marrow chromosome deletion which indicated that yes, I had a plasma disease. They put me on Zoloft saying I had post partum depression and told me to put the chromosome test out of my mind, b/c obviously all of my blood levels were fine.

    So, in an extraordinary effort for my daughter, marriage and career, I put the test out of my mind and blessedly went on with my life without symptoms until two recurrent miscarriages later-- the fetuses died late in the first trimester. My OB kept saying that he wouldnt refer me for specialized testing because "the standard was 3 miscarriages" and I only had two, but I fought and got it. The specialist picked it up right away, and a week later, here I am on baby aspirin.

    I still have many questions which hopefully will be answered by the specialist on APS that I am going to see soon. I feel very blessed to have finally been diagnosed-- I hate to say it, but the "I told you so's" to my husband, family, pscyhiatrist and doctors have been very rewarding-- I just knew that depression was not the cause of these symptoms. It is only by the grace of God that I survived that first APS episode-- I keep thinking how alone I felt b/c my family was fed up with me after the tests were normal-- moreover, how devastatingly close I was to a stroke or some blood clot dislodging-- and no test or doctor had a clue, and I went to some of the best around. Now I know I was "flaring" at the time.

    Anyone on the East Coast of the USA? Would love to get in touch with you--seems like those APS'ers in London are very well organized. We need to get the word out!

    Thanks for listening!
    LiseesMom

     
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    Old 03-12-2004, 12:50 PM   #2
    SandyGirl
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    Re: New Here with APS- Hughes Syndrome

    Hi LiseesMom,
    I am happy you were diagnosed. I am still trying to find the root of my problems, I have posted on many boards (Lupus,Lyme,MS,Neuropathy). The reason I am responding to you is because of your "tingling sensation". That happens to be my worst symptom, I have it in my legs & feet really bad, and my arms & hands really bad. I was tested for APS and it came back negative, I was wondering if you were tested for it & that is how they found it or if they just diagnosed you based on your symptoms? My family is really starting to think I am just nutty, and I am getting very depressed over not being able to find the root of my problem. My symptoms are many, but the tingling is awful, I also get this numb feeling in my face. They ruled out Lupus & MS. Anyway, if you could tell me how you finally were diagnosed I'd like to hear.
    (they only put you on baby asprin?)
    Hope your feeling well! Wish I was!
    ~Sandy

     
    Old 03-12-2004, 01:06 PM   #3
    Liseesmom
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    Re: New Here with APS- Hughes Syndrome

    Quote:
    Originally Posted by SandyGirl
    Hi LiseesMom,
    I am happy you were diagnosed. I am still trying to find the root of my problems, I have posted on many boards (Lupus,Lyme,MS,Neuropathy). The reason I am responding to you is because of your "tingling sensation". That happens to be my worst symptom, I have it in my legs & feet really bad, and my arms & hands really bad. I was tested for APS and it came back negative, I was wondering if you were tested for it & that is how they found it or if they just diagnosed you based on your symptoms? My family is really starting to think I am just nutty, and I am getting very depressed over not being able to find the root of my problem. My symptoms are many, but the tingling is awful, I also get this numb feeling in my face. They ruled out Lupus & MS. Anyway, if you could tell me how you finally were diagnosed I'd like to hear.
    (they only put you on baby asprin?)
    Hope your feeling well! Wish I was!
    ~Sandy
    Dear Sandy,
    I sympathize with your quest for diagnosis. The only thing that kept me sane is that the symptoms did subside (with Zoloft-- so I really did start believing I was depressed).

    I was diagnosed via a simple blood test (ACA =anticardiolipin antibody test), by a fertility specialist (Reproductive Endocronogist) following my latest miscarriage (two months ago). Like I said, I had been through thousands of dollars of tests including tests run by a rheumatologist five years ago, and he didn't pick it up either. I guess maybe just now they are starting to test for it. I was (and believe I still am) ANA negative and Lupus anticoagulant negative.

    I haven't seen a doctor for the APA yet b/c I was just diagnosed this week.
    The Reproductive Endo dr. said for now baby aspirin should be fine since I have lived for five years in good health with no problems except the miscarriages-- however, i am definitely going to get checked out by a specialist so he can determine what meds I should be on.

    Sandy, the one thing I can credit my feeling good to is eating well and constant exercise. Even though you haven't been diagnosed yet, your problems do sound autoimmune-- taking care of yourself is so important. Please do so!

    Liseesom
    PS:
    For Dana-- I noticed you are APS positive as well -if you are reading this, you mentioned that you have seen Dr. Hughes-- he recommended a Dr. Lockshin in NY who I hopefully will be seeing in 3 weeks if my insurance allows it-- Did you find it helpful to see Dr. Hughes personnally?

    Thanks
    Liseesmom

     
    Old 03-12-2004, 01:28 PM   #4
    Sampy123
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    Re: New Here with APS- Hughes Syndrome

    I'm here on the east coast with antiphospholipid antibody syndrome (aka Hughes). Our stories are so similiar that I really could have written YOUR post! I'm running out the door now, but would love to chat later on. Just glad you were finally diagnosed, that's half the battle. Talk to you soon. Shari

     
    Old 03-12-2004, 06:43 PM   #5
    SandyGirl
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    Re: New Here with APS- Hughes Syndrome

    Hi Liseesmom,
    That was the test I had too, the Lupus Anticogulant, it was negative. So the test (ACA) is a different test? This also tests for APS? Is it something any doctor can give or only a fertility specialist? I also get bruises on my legs for no reason. My doctor thinks I am nuts that I walk in there and tell him what to test me for! But he is not trying to figure out whats wrong with me, so I have to! Dana (Angelic) had mentioned once before that I could be seronegative, which means I have APS but don't test pos, and when I said that to my doctor he looked at me as though I WANT something to be wrong with me! I can't stand it anymore. Anyway, my battle is still ahead of me, but I do take a baby asprin everyday just in case!
    take care!!!
    ~Sandy~

     
    Old 03-12-2004, 09:43 PM   #6
    lovemythreeguys2002
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    Re: New Here with APS- Hughes Syndrome

    Sandy...the tingling and bruising can be from thyroid disease...and even if you have been tested and told you were normal, that can be very innaccurate
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    Old 03-12-2004, 09:57 PM   #7
    Deda
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    Re: New Here with APS- Hughes Syndrome

    Quote:
    Originally Posted by lovemythreeguys2002
    Sandy...the tingling and bruising can be from thyroid disease...and even if you have been tested and told you were normal, that can be very innaccurate


    OMG, LM3G, I was just about to post the same exact thing, and then saw that you did! Weird.

    Yes, check for hypothyroid. My hands and feet were killing me, AND, I had a numb spot on my cheek as well!! Sometimes it would tingle, sometimes it was numb. And I went on with those pains for 2 years, because when they tested my thyroid, they only did a TSH. (Twice tested and it was 3.5 and 3.6) Little did I know they had a full thyroid panel that should have been done. Also Antibodies! Mine came out 1000, with under 35 being normal. I was treated by my docs like I was a mental case too, (they always try to give us antidepressants, don't they?) but you know you're not imagining symptoms like painful hands for 2 years!!! Finally I came to the thyroid board here and read hundreds of messages and determined by myself that I indeed had hypo. (Before that I would only read a few mess., and lots of people were talking about their weight gain, and as I hadn't gained a lb., I thought there was no way I was hypo, [not everyone gains weight]). So thank God for these boards.

    If you do get tested for hypothyroid, make sure they check not only TSH, but free T3 and FreeT4 as well, AND check for antibodies to see if it's autoimmune.

    I wish good health to all of you ladies..
    DEDA

     
    Old 03-12-2004, 10:57 PM   #8
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    Re: New Here with APS- Hughes Syndrome

    Hey all!

    I did indeed see the "big guy" himself! I found it extremely helpful to travel from Canada to London England because I spent 10 years waiting for these guys to figure out what was going on with me. I have become a self- professed expert now and my goal is to educate educate educate!!! Seeing Dr. Hughes was the most amazing experience. He is the most dignified, amazing, and sweet man I have ever met. The best part of him is that he has NO idea how truly awesome he is! He had me diagnosed, and with a treatment regime within half an hour!

    I am so happy that you found us LiseesMom. As you can see, I am trying SO hard to get people familiar with APS and its symptoms. APS is responsible for 40% of strokes in women under the age of 50!! I think that this is my journey! I am just so happy that you were diagnosed, that in itself is a miracle. We can go SO long with the positive blood work and no one knowing. Its crazy!


    Sandy- The anticardiolipin antibody test and the Lupus anticoagulant are two different tests. People that have Sero-Positive APS can be positive on one, or both of those tests. That is why it is recommended to have both done. If you havent had the Anticardiolipin done- I think that its a good idea. I do think that you may have Sero-Negative APS indeed because of your symptoms.

    For everyone- REMEMBER that APS can exist WITHOUT the positive blood work. Dr. Hughes feels that since medical science is not perfect, a person would have to be tested every DAY for years in order to get that one positive test. A negative test result does NOT indicate that you don't haev APS. The best way is to speak to your Rheumatologist or other specialist about going on anticoagulants as a trial to see if your symptoms improve. If they do, then you have it. That is what Dr. Hughes does with his patients that he is convinced have it but don't have the blood work. SO many doctors depend on the blood work when it comes to Lupus and APS when truly they should be doing what Dr. Hughes says.. "Ask the patient, for they will tell you the diagnosis". Too bad they aren't as wonderful and patient centered as he is!!!

    I hope that I can help many people get diagnosed and treated properly through my medical training and expertise. If you do have any questions about APS, chances are I can answer them. You guys know that I am here- night or day! I actually just spent a couple of days in the hospital because my darn blood sugar was dropping so low and I was acting really weird. My GP stuck me on an IV of glucose. THey aren't sure if it is inflammatory or stomach related. I do have Diabetes so I have confused. You guys take care, and I am so glad that APS is coming up so much more often than it did! I have 43 people diagnosed because I helped. I hope that I can help all of you guys get diagnosed and treated too. I always say that things aren't done in OUR time, they are done in God's time Take care you guys.. you are all in my prayers!

    ~Luv, Angelic (Dana)

     
    Old 03-12-2004, 11:00 PM   #9
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    Re: New Here with APS- Hughes Syndrome

    P.S. Any other autoimmune disease can go with Lupus and APS. If you have one autoimmune diseases you are way more likely to have others. I have 5 actually, all of them are related!~ Thyroid is a major one in many people, I don't actually have that but I am blessed with Iron based anemia AND B12 deficiency related anemia (pernicious).

    ~Dana

     
    Old 03-13-2004, 01:27 AM   #10
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    Re: New Here with APS- Hughes Syndrome

    Quote:
    Originally Posted by AngelicBrat
    P.S. Any other autoimmune disease can go with Lupus and APS. If you have one autoimmune diseases you are way more likely to have others. I have 5 actually, all of them are related!~ Thyroid is a major one in many people, I don't actually have that but I am blessed with Iron based anemia AND B12 deficiency related anemia (pernicious).

    ~Dana


    Hi Angelica--

    I see you keep yourself really busy on this board, and I think it's great how you try to help so many other people.

    Yes, I know how having one auto immune disease makes us likely to get another one. Scary ! My late brother had at least 5 of them, including, pernicious anemia, vasculitis, Hashimoto's, Idiopathic pulmonary fibrosis, and extremely rare, Wegener's Granulomatosis. The IPF took his life at 46, and my mothers at 56. So, you know I worry about this a lot, but what can I do, other than try to take good care of myself, and pray. What are the symptoms of this APS AND the pernicious anemia, if you don't mind me asking? I have researched a lot of these disorders on the net, but you know how they always print the most common, classic symptoms, like they do with hypothyroid? Most of the symptoms I'd see whenever I'd look it up, made me think I didn't have it, as my symptoms were so bizarre. I find that hearing it from people that actually have the disease, seems to be the best way to learn about it.
    God bless you, Angelica, and keep up the good work here. BTW, do you feel pretty good? You always sound so upbeat in your postings.

    Best wishes..
    DEDA

     
    Old 03-13-2004, 09:22 PM   #11
    Liseesmom
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    Re: New Here with APS- Hughes Syndrome

    Hi Sandy
    Yes it was the positive anticardiolipin test w/ the recurrent miscarriages that led to the diagnosis. As far as I know I am ANA negative and Lupus Anticoagulant negative. But everything that everyone says about having more than one of these autoimmune diseases scares the heck out of me. I am so scared of feeling bad again-- apart from the sadness of the miscarriages, I haven't had any really troubling symptoms for nearly five years.

    Thanks Dana for telling me about "the big man!" I called his office and recommended a Dr. in NY, which is an hour away from me.

    Liseesmom

     
    Old 03-13-2004, 10:47 PM   #12
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    Re: New Here with APS- Hughes Syndrome

    I am so happy to hear that you are going to see a recommended Doctor! Dr. Hughes is so brilliant. He recommended one of his collegues for me close to home too, so I am content! AND I get to go back to England to see him in the summer or fall

    You asked about how I was feeling earlier. I am quite sick actually, I really try to keep positive and help others. I am not a big fan of the "pity pot". I figure that the Lord put me here for a reason.. and I am pretty sure it is to help others with this sort of stuff! You can read my story in this forum if you want.. it was a heck of a journey for me! I am just glad that your doctor recognized teh symptoms and blood work for APS. I don't know if you know this, but you can have either Primary or Secondary APS. If you don't have symptoms of Lupus then my bet is that you have Primary APS. Even so, I hope that they keep a good eye on you in case you develop symptoms of Lupus too! 70% of us Lupies have APS! I am so glad that you found us here too Talk to you soon!

    ~Luv, Dana XO

     
    Old 03-21-2004, 06:12 PM   #13
    Krazykcio
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    Re: New Here with APS- Hughes Syndrome

    Hi Liseesmom,
    I live on the east coast....in Vermont. Does that help? Hope all's well. Kathy
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