So confused and so miserable

Went to Florida to be snowbirds for the winter months I have MS, Lupus,Hughes and a few more. My 2nd hospitalization in less than one month. Was rushed into hospital as the Lupus attacked both my lungs after exposure to hugh quantity of black mold. While there I had the worst coughing spell ever. I felt something and heard something pop in my abdomen on right side. When it happened the pain was so excruciating that I screamed no tests or xrays were taken at that time things went downhill but my PT,INR was 2.7. I decided to sign myself out of the hospital AMA and my husband and I decided to drive the 1800 miles back up north ..i felt so sick and decided if I am to due, I'd rather do so near family. We arrived 2 days later during the night. We went to my daughters. By 7 am I couldn't walk two feet and be completely out of breath family drove me to my drs I was in severe respiratory distress and sent by ambulance to the hospital upon being evaluated, couldn't breathe and severe pain through my upper right abdomen unto my side, they noticed I was bleeding under the skin severely one of the areas was 14 inches long by 6 inches wide. They did a CT scan and found an extremely large hematoma with all the free floating blood they couldn't see if I was still actively bleeding. While in that first hospital, j definitely hurt something so bad to do this damage and no tests or pics were taken while there. I do have Hughes and on coumadin, my last unr before I left that hospital was 2.7 no Coumadin was taken during the ride home. While here they did pt,inr and found I was way too thinned out. The bleeding slowed down yesterday but during the night started again, now leaving all that brusung on my front of the belly. My vidt looks like a roadmap as they keep circling the bruses as they grow.this has been a nightmare, in the ER the Dr said I am so glad you made it here because just 24 hours later, we would.t be having thus conversation. I am now in good hands but with all these autoimmune issues and bleeding I am so scared sorry for the length of this post but really needed to be able to say what's going on. U dint gave much in support at home but for my husband and daughter but they are also stressed out with all of this.

30 Replies

  • Sorry for some mispellings on meds and a tiny handy phone

  • Hi, What a nightmare you have been through........!

    Now I wonder what your Specialist of APS says about all this? Is that the one who has diagnosed you both with Lupus and MS also?

    It is rather unusual to have both MS and APS. Many members here incl me also, have heard that we may have MS before a knowledgeable Doctor of APS understands that it has to do with our blood. It must be difficult to keep an INR in the right level when on a lot of different drugs that changes also.

    Did you have a diagnose of antibodies or on symptoms re APS? Hope you see a Doctor specialized of APS, perhaps a Rheumatologist who also knows Lupus.

    Have you read "Sticky Blood Explained" by Kay Thackray? She has APS and writes about how it is to live with this rare illness that so very few doctors know and also about a lot of its symptoms.

    Best wishes from Kerstin in Stockholm

  • All my dx,s were given by different specialists after varying tests were done. MS care new England was the MS dx in Florida was the lupus as those symtoms started showing up had the Ana testing fir the lupus both times positive with speckled patterns. After my second DVR and two TIA,s while hospitalized they had a hematologist,oncologist come in to do all the testing for APS,lupus anticoagulant etc. When results were in they also had me seen with rheumy. It's been tests drs hospitals but now with aging its not stopping. I want to do that reading that was suggested even Debbie suggested the reading so as soon as I get home I will also learn to better understand it myself...hopefully. It has definitely been so hard though and so damn frustrating, to the point where I would love to throw in the towel and just give up.

  • There are two things: 1) A Doctor who understands APS (he/she will also understand Lupus) 2) To be properly and also stable anticoagulated as we have too thick blood.

    This "Sticky Blood Explained" by Kay Thackray is also good for relatives to understand what APS is and its different symptoms and also how it is to live with it. We have it inside because our outside looks great.

    Get help from people as you must be exhaused. See to it that they take all the bloodsamples and get papers and copies and journals (whatever you get in your country) from what has happened even the bloodtests for APS and ANAs etc etc. Your husband can ev help you with this.

    The most important of all: Do not give up! Better times will come. You will see.

    I wish you have a nice, knowledgeable Rheumatologist to talk to who will know what to look for and what drugs you need.

    Best wishes to you from Kerstin in Stockholm and Good Luck!

  • Hi there, you really need some detailed care medical care, and I will add that, exposure to black mold will make even somebody without a compromised immune system very ill in some cases!

    Please let us know how you get on, you may take a while to recover and settle down.... MaryF

  • Hi Mary and Kirstin I have past the info on to my specialist. He never seemed relunctant to learn more regarding all this, so hopefully we will be able to get a better grip on things. I am so depressed since finding out today this will probably be the norm for me for the rest of my life and I am scared to death.

  • Dr was just in going for another ct scan as bleeding is ongoing. After many years of symptoms of ms I was finally formally diagnosed in 2000 with it within a year I had additional problems after ana positive twice confirmed lupus. During my childbearing years I had problems with blood clots at one point I had a mild cerebral hemmorage. In 2008 I developed 2 dvrs hospialuzed with both. Hematologist ran tests for lupus anticoagulant,antiphospholipid syndrome etc. I then was diagnosed with APS and placed on coumadin..this was also after having 2 tIA,s. It's very strange in my immediate family my mother, sister and myself have been diagnosed with all 3 autoimmune illnesses. What really makes it extremely scary my mother bled out and passed away with liver ishemia. I am only a lay person although I ask many questionsiam so overwhelmed and confused right now.

  • Do give your current doctors an email containing the charity website as the information regarding related conditions, medication and symptoms plus loads more is so useful:

    and of course some useful medical names on here, including in the USA!


  • Hi Mary don't recall if I told you, but decided to go to NYC to Hosp For Special Surfery! I wanted to test my wonderful Hemotologist and ask him if my itching goes with APS also? He said no and it WUD be weird if it did!!! He cald me that evening with a 1.7 INR! Not good feel real bad! I also told him about this site & told him it's from APS!!! He was quoted for a moment, then asked me what do they do for u! I told him nothing, it comes from the inside! He at first told me he wants my INR levels between 2.5-3.5! Now he sez between 2 & 3! Wen I was at 3.7 I felt great! Do I tell him how to treat me till I can afford NYC? Or do I continue in agony every night with leg pain! No longer cramps? Agonizing pain! I'm still awake in pain! No pain meds help it!!! What can I do???

  • Quiet for a moment! Sorry misspelled words! My

  • Remind me, have you and he also checked iron, B12, D and Thyroid....? This is important, any of those being low do not help. MaryF

  • I tried to but my primary DICTOR made fun of me! I use to studder as a child and the minute someone makes fun of me I shut down! My D levels at very low!

  • It is very important that you get your levels up. MaryF

  • When are you seeing a Doctor (Specialist) in NYC? Have you found him/her and do you have an appointment?

    I know members on this site that have suggested Specialists in NYC.

    I cannot understand why he lowered your INR to 2.0 - 3.0.

    Doctors do not like to be told what to do. At least most of them. He obviously do not know APS and you can probably not ask him questions about your sympoms either. You need a Specialist.

    Did he take the bloodsamples that Mary suggested are important for us with autoimmun illnesses. D-vit, B12, Thyroid-panel, Ferritin etc.


  • No and Kerstin I just love you!!! Thank you sooooooo much for referring me to The book by Kay Thackray! Omg I had CATOSTROFIC APS! She dedicated a whole chapter to it! She said DONT IGNORE BLUE TOES! My Dom told me I had several blood clots spewing from my heart and to my foot! Wen I got there they gave me life saving Clot Buster! I never understood Wat all the commotion was about! He was screaming orders to everyone there and on New Yesrs Night he told me he had to operate not only to save my foot or toes, but told my sister my life!!! He operated on my foot 4 times! He said in his history of being a vascular surgeon he's NEVER seen anything like I had! He said the clots I had not even he cud budge! He said he put chemical, he tried to cut them out and it was like I had crazy glue on them and he was sooooooo very angry at himself because he cud do nothing to save my leg, but by giving me the clot buster, he probably saved my life! He said I was so very lucky that the spewing clots didn't go to my brain! He couldn't believe they landed in my leg! He said lungs too! It was bad enuf the came from my heart!!! I can't believe he really did save me!!! Omg I'm so eternally greatful to him! To you Kerstin and Mary for helping me thru this! You have made me make up my mind, need a specialist NOW! Yesterday I had terrible pains in my toes and wen I tuk my boots off there was a slight bluing to the bottom of my toes! I shloffed it off to tight boots??? Maybe I shud call doc who saved me??? What u think! No have no appts yet, but the Lady on this site send me to Mt. Sai I or JohnHopkins or Hosp for Spec Surgery and they have whole Unit there!!! I think I may try that! I was going to wait till after holidays, but maybe I shouldn't? I have bad calf pain in rt. Leg and it feels like Phlebitus/DVT? I think I better call my doc! My INR IS AT 1.7 with all that medication! I just don't understand!!! Thank You Kerstin and Mary and all who have replied! It just is so helpful and reassuring! I don't know what to say! God Bless You All!!!

  • I do believe he saved your Life!!

    The most important for you is that you have people around you (incl your coming Specialist) that really UNDERSTAND APS. Talk perhaps to that surgeon who saved your Life, he must remember you very well. Ask him how to get papers about what happened in the hospital (incl bloodsamples and journals). When you see that Specialst who you must see urgent, you can show him what happened to you.

    I know how important it is to have papers so the doctors understand.

    Take care and see to it that you are well anticoagulated with warfarin or whatever ........-

    God bless you. Keep my fingers crossed now!!


  • Yes Kerstin I found on this site a female doc in NYC and will call today to see if she takes my insurance! My doc who saved me, I works with in St. FRANCIS THE HEART CENTER! I worked there for 7 years and also worked with his wife! Yes I don't think he'll ever forget my case! He was very angry at me for not calling him! I told him because he didn't take my insurance and he said he'd have seen me for free! With the OBAMA DEBACLE, I was right in the middle of it and unfortunately a victim of his and this country's medical crisis! It's sad, but true! I just can't yet come to grips with all that happened to me because of OBAMA DEBACLE! He now sees me for free! An amazing man! He was so upset and angry that he couldn't save my leg that he told my Hemotologist he performed an autopsy on my leg and found NO PLAQUE and that he was not surprised I had APS! The only Doctor who believed in me! I'm in pain every night and morning and a bit shakey today! I guess it's stress and just feel unwell! Why shakey tho? Guess I'm nervous! I think I'm at the end of my rope! Kay says don't give up, but I'm close at this point! I'm on antidepressants since my beloved son and only child passed away 9 years ago December 6th! He was 24 wen passed and I get very saddened at the Holiday Time! I can't thank you and Mary and you enough! Also everyone on this site has somehow comforted me in the fact that I'm not alone! GODSPEED!

  • Hi Kerstin I think I'm in trouble! I went to Hemotologist in my docs office, but he wasn't in and I saw his partner! I went cuz I fell outa bed and hurt my butt and I've had very extreme pain in my good leg, in calf! It feels like Phlebitus!!! Wen I saw this other doc he never looked at my leg or checked to c if I even had a pulse in that leg! This morning I woke up wit bad pain in calf and swollen ankle! Plus my calf very hard, but that cud be me getting muscular right leg cuz I use it more since I lost my leg to this dreadful disease! I go to NYC this Wedyto c APS SPECIALIST DR. Caroline Cromwell! Shud I call my vascular doc , the one who saved my life and believed in me, or shud I just wait til Wednesday! Also wen I saw this doc and he called to tell me my blood too low! He told me it was 1.7 and I told him it was the same 9 days ago 1.7! He said it was 1.4 which now my usual Hemotologist is lying to me! He told me it was 1.7 & this Hemotologist tells me it was 1.7! I blew my coop! I said well Wat u Guna do? I said I'm suppose to b between 3-4 with APS! He said do what I've been doing cuz it came up! I told him it came up 3/10ths of a point and that's not good! He then told ne to take one extra pill and come see my regular doc on Tuesday! They all just wana get me off the phone cuz they know I know more than they do! I'm so sik of our being treated badly and want to shout it on the rooftops! I don't wana be in danger of loosing another leg so I better call my vascular doc this time! He sees me for free and very good at diagnosises!!! Thx GODSPEED

  • If you want an answer tonight please put your own new question on the site.

    This is quite too difficult for me as i am not even medical trained. Sorry I can not help. Good Luck


  • Hi dar58

    So sorry to hear what you are going through, and I hope you get some answers and help asap.

    A similar occurrence happened to me recently.

    4thNov this year I had an gastric sleeve op, with infection and high blood pressure keeping me in hospital a few day extra than planned.

    At home I vomited a few times and coughed more than usual. By Mon the 16th Nov I had cramp like pains in my groin. As the week went on, the pain got more and more debilitating. By Thurs i didn't recognise myself in the mirror as I was so pale. I had not passed urine for a few days, plus I was unable to walk due to the pain. I did call the ambulance on Thurs, but they did nor consider me urgent, so sent a non medical team for me. transferring from trolley to bed was agonising. I begged for a catheter. After a few hours I was taken for a ct scan which showed internal bleeding, so they needed to do another with contrast dye. i also received several units of blood before being transferred blue light to king's college hospital, London. There I was taken to A&E whilst given more blood whilst they decided what to do. Eventually they operated band removed 4 pints of blood and clots, but they could not find the source. I remained in hospital for another week for observation and antibiotics. I have almost recovered but I am very fearful of doing anything in case it happens again. i am going to exercise class tomorrow,mon, but I will take it easy. scary or what? I am due to see my aps special ist on 17thDecember at st Thomas's, and hopefully they can answer some questions. Take care all.

  • I wish you the best and so sorry you have been having a rough go at thus also. It's scary and frustrating to say the least. I thank God everyday for these support sites. It is and can be do hard talking to family and friends, I know they get sick and tired if hearing about what we go through in a daily basis. Hugs

  • Are you in the Hospital at present? Talk to the doctors in the hospital and tell them you only have a GP and you want a Specialist of APS.

    Lupus Anticoagulant as you and I have is not Lupus but I guess they know that at the hospital.


  • Hi Kerstin, yes between 2 hospitals been a total of 2 weeks now

  • Praying for you and hope you're getting better! :(

  • Oh poor you & family - hope all is now being investigated properly and that you are on the mend

  • Thank you for all your support it has been horrible. I do k ow lupus and lupus anticoagulant,antiphospholipid syndrome, Hughes etc is not the same although many ppl do get dx with Ms prior to APS dx many of us have a higher than usual predisposition to multiple autoimmune diseases. A link with many family members being dz with 3 or more has been carefully watched for dime type if herditary markers. Good news is the blood transfusions are kn hold, the hematomer at present is stable pt,unr us in great theraputuc value now they di not want to advance with more counsdin right now but will bridge with livenox shots.

  • what state do you live in?

  • I am in Connecticut now Luisa. It took my husband almost 28 hours to drive me here. I really cannot remember the drive from Florida, but we made it here with no time to waste per drs words. My daughter took pics of the bleeding profusely through my abdomen, side and back to buttocks. I wish I could post them. The hematoma is stable now but huge internally. I am feeling better tonight so I am now in the mend and probably have been getting the best healthcare I've ever had since getting here.

  • Omg so sorry for your troubles!!! I have been misdiagnosed my whole life! At one point I started to believe myself that I was mentally ill and it was all in my head! Since I was born, 3 weeks old had many problems! Going for Hosp stays as a child for weeks and leaving as a child without a DX!! I lost my leg to incompetence! Had 4-7 bouts with DVT strike at 29! DX'd with MS, fibromyalgia! Telling my one friend I no something wrong , just hope not too late for me! My leg was to late!!! I totally understand and live in Long Island, New York! I'm always on this site if you need to talk my dear! My heart is so saddened to hear what you've been thru!! God is with us special people! He put this site hear to help us!!! I'm in NY and theirs a hospital for special surgery in NYC, that I must go to because I'm teaching my doctors/Hemotologist about this disorder!!! I also have Polycythemia Vera/PV a very rare sludgy blood disorder, but it affects all the other parts of my blood from APS! So I have double whammy! Only 65,000 people DX'd in USA with PV! MY prayers go out to you my dear!!! GODSPEED! Oh PV and APS are caused by same Gene so just know to tell my sis I don't need genetic testing! I have the GENE!!! The only thing good about this darn painful debilitating disorder!!!

  • This is nothing bad I said! I think it was me rewriting what I misspelled by sayin quiet a moment! I was just correcting a misspelled word nothing to offend you my dear! Sorry for this misunderstanding! How r u doing! I hope u r still being treated well! I pray for u Dar!

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