Sticky Blood-Hughes Syndrome Support
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Brain Fog please help me!

Brain Fog please help me!

Hi Everyone! Mary Lure 2 Kerstin all of you have helped me so much! I can't tell you how much! My dear sister Lynn/ Nanny 23 had been trying to understand my illness so has joined! I've begged her to get tested! Because of you wonderful people on here she has symptoms! I without being tested know I have the JAK Gene that causescAPS! The reason is for this site! There was one other woman on hear that has PV/Polycythemia Vera along with APS! I went to PV sit which I havnt in 10 years since 2 years b4 I went to Hemotologist and asked him if I had PV! He wanted to know how I knew is such a rare blood disease ! Research cuz no one tuk my serious! A lifetime of Pyschosematic illnesses! Oh By The way I want that Person who also has PV to know thatvThe JAK 2 Gene causes both! Kerstin/Lure 2 said a wor like she is a phenomenon! I don't know how to get bak to that site to speak to Kerstin or the person with PV and APS! Also the person who recommended A Dr Caroline C or Crowly I have sever brain fog! I'm very confused lately! To the point where I think I have just taken my meds cuz bottle ther but don't remember if I actually tuk it! I don't do that wit Coumadin or Plavix! My sis and I did something the other day and I had no memory of it whatsoever! My cymbalta I've taken sinc my Beloved son passed in Dec. 6,2006 which helped! This has been going in for a couple of years my sis too! Maybe it's cuz 9th anniversary of my only child(had trouble with pregnancy, hi risk and hi BP! , premature by 3-4 weeks!)! I'm unwell and in bed every other day and in a rush to get things done b4 Dec 6 for Xmas! I'll be decorating this weekend and also most done with Xmas shopping! I very hard on myself! I also must tell Y'All about my experience with 2 docs my Hemyand my Primary! Went to primary and told him APS WAS RARE! O no he says and I wanted to tell him Wat Mary has told me about Vit D and B 12! Wen I said Vit. D he said Wat are u kidding me Vit. D has nothing tondo with APS, you must mean Vit K! Instead of T gelling the Gods they're wrong I

shut up! But write him a letter cuz I can't afford THE $30 cause of THE DESPISED OBAMA Problems! I of course was ne in that insurance DEBSCLE 2yrs ago and wound up getting private care 4 $700 a month! He also lost me my leg! I never cried over my loss of leg just accepted my fate! Now I can't stand the site of it! I cry! Cud I be having PTSD or is I cuz I lost my son and loosing a leg was a piece of cake! I've become bulletproof since his Passing! I just forget everything &!0people get angry at me for that! What shud I tell them w/o insulting them??Wat can b done about the BRAINFOG! I try to write things down, but my sis got That Carilyne C's phone number I wrote Caroline in my phone and lost paper! Omg she was from NY! Also Kerstin replied to the PV & APS PERSON! I don't get many replies Mary am I doing it all wrong! Thx pls explain!!!GODSPEED!!!

This Photo was one mint b4 I lost my leg! I was 61 at the time! I now look 73! Lol... Lost 30 pounds! Absolutely NI APPETITE! Hate meat and chucke all of a sudden! Eat fresh veggies and carbs and still loosin!!Dont tell my Non Educated in APS DICS! I also aske my Hemotologist if my itch was caused by APS No he sai and it WUD be weird if it was! I live him but will give him book and enlighten him about it!!! Lol. Plus a letter cuz I don't want to embarrass him about it in person! Lol... Yes I'm way too kind! GODSPEED TO ALL MY NEWDOUND ß DVR bdbfb f b

4 Replies

In any autoimmune disease it is good to check levels of vitamin D, B12 and iron and if they are low you will feel worse, same for checking out the Thyroid, keep well, and if you are stressed about the awful things that happened to you, do consider counselling to talk it through a lot of people do. Best wishes. MaryF


Hi again,

Sorry you are feeling so bad. I can understand how you feel.

I wonder have you tried to find an APS-Specialist yet? AnnNY told you that there is a special surgery in Manhattan that is a center for APS. You have to get to a Specialist of APS!

We are so many on this site and with a bad memory I do not remember if you have got an anticoagulation drug? These two things are important. Try to get copies from your op and other papers of importance so you can show your Specialist. As I live in Sweden I do not know of all the rules there are to get referred.

Try to write things down every day. I must do that or else I have forgotten it. Important to write drugs down also and if you change. You will see everything will soon be better when you have got a Doctor to talk to who understands. We all have had to fight and I know how it is when you feel crazy and also afraid.

Best wishes to you from Kerstin


Yes I've been on Lovenox self given shots for first 2 wks of diagnosises and now 10 mg a day of Warfarin, plus Plavix everyday! I'm not stabilizing very well! This past time my INR was 1.7 when normal people are 1.9! I can't understand with all those meds getting an INR like that! I fell twice and feel real bad! The balance issues are bad for me! Wen my doc cald me I explained that he was wrong about the itch and he asked me what do they do about it! I told him nothing! He was very good about it! Most WUD take offense! Thx Kerstin for replying! It's difficult to get answers and wen people reply it helps me to cope! GODSPEED!!!


I use to repeat myself by always saying: Get an APS-Specialist and a diagnose and a drug to thin your blood properly. That means it should be a INR high enough to prevent clots and it should also be stable (within the therapeutic level set by the Specialist of APS) . If it is possible try to selftest.

These two things (anticoagulation that works and an APS-Specialist) are the most important things with APS I have found. You also have ev other issues but still you need that APS-doctor who will listen to you and know what is APS and what is something quite different. Then that Specialist can refer you to other Specialists. I for ex have a Cardiologist also. But they all will listen to what the APS-Specialist tells them and act according to his knowledge and wishes.

Best wishes from me and Good Luck



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