Still not anti coagulated after 6 months!!! Soooo distressed!

Hi just an update! Going to Rheumy tomorrow! I finally listened to y'all and went in ambulance to hospital! Unfortunately no one ther ever heard of APS!!! I laid there for 5 hours b4 Bing helped! They gave me 5 mg of morphine which barley tuk my agony away! Then had CAT SCAN only to find out my T-Spine ( mid-back is deteriorating due to my RA , which unfortunately had JRA as kid and thought I grew out of it! For sometime it was gone only to come back with a vengence! Plus since I've had 6 stomach surgeries had many adhesions from scar tissue! So better I stay on GF Diet cuz when I get hungry, which very rare, I seem to go off of it and pay dearly! I have Sojerns too and my sinuses are drying up too! My sis has APS, but without the blood clotting factor! I'm so relieved cuz the guilt that I gave it to her was overwhelming! Unfortunately she is allergic to cows milk and very upset cuz a big milk lover! I knew that was the case! So her dilemma is GF now, she lost ten pounds, is no milk in diet! Everything has milk! Any suggestions for milk free diet! I told her to drink almond or coconut milk which is D elisions!!!  But u can't have anything with milk! Now I'm going back to her allergy doc to have him help me find out my allergies! I'm allergic to many thing that my sis is! I have many medication allergies that send me into anaphylaxis!!!  So life becomes more and more complicated as Dr. ERKAN so diligently told me how complicated I was at least 3 times during our visit! Coming from a man of his stature scared the s..t out of me!!! My sis loves my Hemotologist and I'll stick with him instead of a man that just tells me how very complicated I am and just want me for research I'm not a number I'm a human! Lol... Sorry if I insult any of you , but that's how I felt after a while! I would have punched him if he told me one more time how complicated I was!!! It's something u really don't wana hear from a man of his stature! He's an Acadamien and a great researcher and probably wants to help me if allowed to, but his prices are way too high for his help! I just can't afford him! It's so sad, but medicine is a business and if not a big business a Godlike attitude and u become a statistic! Sorry I'm angry at the whole system after going to a hospital and being treated like you're a nut job!!!  Hope you all are doing ok and coping! I'm not coping well at all! I'm just fed up and can't deal and just wud like to go Hollistic and stop all meds! My INR being 1.2 on all that blood thinner! The headaches, the brain fog scaring me! My sis one day had to hang up on me cuz I wasn't making any sense! I couldn't remember the simplest words! She just said ur mat making sense and I don't know what ur talking about! Jumble words! The headaches are everyday and I spoke to Hemo and he's thing of putting me on other pills as soon as he sees they work, but he won't now cuz they're not proven to work???

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  • Hi Deb,

    I am sorry you find everything hopeless. I understand it is very difficult for you at present. If you are going to be on special GF diet I suggest you make notes of what you eat. At least to begin with ......  It is difficult to handle Warfarin if you do not know  how it works. You also have to follow others directives and I have heard that mostly they want to change the tablets a lot and then it takes up to 3 days before any change. It will be like a rollercouster. Could Fragminshots be something ........instead of Warfarin?

    How does Lynn manage the INR and is she with Dr Erkan? 

    Kerstin

  • No she's with my Hemotologist Kerstin and she's being retested! Fortunately she tests positive for APS, but without the blood clotting factor! She need to be aware that, that cud change at anytime and seen a few times a year to be checked! She has the thyroid and the body aches, but Not the blood clotting factor, which put my mind a bit at ease cuz I felt like I gave it to her! I applaud you and Mary and the admins for helping us to get thru this rough patch now! Plus all you kind AWSOME people out there responding to me and my sister! I have no idea if I'm making any sense, but am sincere in my applause for all of my APS comrades out there! Thank you and God Bless You All!!!

  • If you come across medical professionals finding it difficult to understand the disease, give them these two links:   There are some names in the USA they could contact:   apsaction.com/

    and of course this website: hughes-syndrome.org/

    MaryF

  • I have a friend who is Lactose intolerant and is able to buy lactose free milk (UHT) which she can tolerate.  Otherwise a small amount of skim milk as in coffee is OK.

  • Hi Ozchick thx so much for ur reply, but THERS a difference between lactose intolerant and being allergic to cows milk! It's all milk products including cheese cookies anything mad with milk! Some are just lactose intolerant and then u just buy milk w/o the lactose! Unfortunately for my sis it wud be easier if it were just the lactose, but it's the whole cow!!! Lol... Thx again for ur reply it's so appreciated! You too Kerstin! 

  • Awe thx all of u! I'm not usually like I was in that post! I'm a tolerant patient human being! I feel like I'm becoming someone I don't recognize anymore and it's just scarey! I just wana be plain old Debbie again! Someone smart who makes sense wen she speaks, not a jumble of mish mosh I don't even understand! The headaches r becoming distress ive and intolerable! I don't like who I'm becoming and don't understand why I'm suddenly stupid!!! Lol.. Have a good night and hoe you all are doing well!!! Godspeed!

  • What do you mean with "blood clotting factor" for your sister? She has no blood clotting factor but is positive to APS you say. 

    You feel the way you do as you are not anticoagulated. Ask about Fragminshot like Dave and APsnotFab are on. You must take up this with your Specialist of APS.

    Kerstin

  • You are so right Kerstin. I told my sister this. With that low INR she is in danger of getting a clot. I tested positive for anticardiolipin antibodies. But have never had a blood clot before so I am being watched for symptoms and retested. Allergy dr. Tested for autoimmune antibodies in general and that was positive too. Kind of confusing! Thanks for the post and your concern. 

  • Aha, now i see what your sister means. Sometimes my English/Swedish makes it difficult to understand correctly. 

    I think you should be glad that you have been tested so you have it on "paper" if you get symptoms. She has now a bad consience because she thinks that she has given you this illness. Instead I think she has helped you to a Doctor who is known to know APS well. Dr Erkan it was I think. 

    Deb has been going a long time without knowing of APS, Sjögrens etc and now she must "claim" that the responsible Doctor gives her the right anticoagulation-drug. She is really fighting now I feel it in my heart and i feel so sorry for her that she does not get the right help that she needs. 

    Kerstin

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