Advice PLEASE!

[DanaL13]

I haven't been active on the site since last year. I have been in poor health and just trying to get through each day has proven to be no small feat. I wonder if anyone else has had the struggles that I've had with inadequate medical care? I should be on anticoagulants for life but have been without them for a few months. I've had a pulmonary embolism and a 10" DVT in my left arm in the past. I also have had TIA's. The inability to take Eliquis and Xarelto due to abdominal bleeding and weight loss coupled with my doctors inability to understand APS and the conditions associated with it has left me to deal with the APS, Narcolepsy with cataplexy, and SLE Lupus without any treatment at all. I'm struggling and yet doctors don't seem to care or don't seem to grasp the importance of urgency when I'm having to wait 3-4 months for a referral to go through to see a specialist. My INR levels are consistently abnormal when I have blood work done and I have received the run around by my doctors for far too long attempting to treat one symptom at a time instead of looking at all the symptoms as a whole. Does anyone have any recommendations on how I can finally obtain some form of effective treatment? I asked this in the past and got some information. However, inquiries into the info proved fruitless because I never heard anything from the sources given. I know there are other effective treatments than just Eliquis and Xarelto and yet the hematologist I had seen in the past year did not suggest any of them and said I should stick with the Eliquis despite the side effects and that my rheumatologist or my cardiologist should take on the responsibility of treating my APS.. My rheumatologist said that considering I had a G6PD deficiency, any further treatment for Lupus would just be a waste of time and that he could not treat the APS if he know longer had recommendations beneficial in treating the Symptoms of Lupus. My cardiologist said he dealt in cardiovascular but did not specialize in blood disorders. He did send a referral to another hematologist that specializes in APS but my appointment is 4 months from now. In the meantime, I'm having to wait four months for an appointment to see a specialist for Narcolepsy because the neurologist I was seeing didn't feel comfortable treating the condition with all the other medical issues involved. So in the meantime, I'm living with all of the symptoms associated with all 3 conditions with no treatment while trying to raise a child by myself who has recently in the past few months started exhibiting signs of autoimmune issues that I had at his age.. Not to seem paranoid but wouldn't all this make you wonder just what is going on here??! Just my thoughts.. thanks for any help anyone might have.

[MaryF Administrator]

Hi, remind me are you in the UK, as at the top of our forum on the right hand side, pinned posts, are our list of recommended consultants, you need one of them and so does your GP, it is also about testing your Thyroid, also D, B12 and Iron, and coming up with a medical plan for your other medication, really your GP needs to be moving on this fast, unless he or she is prepared for something to happen to you, which could be avoided: Some consultants also on our charity website, you need to take somebody with you to the GP and push harder for a quicker referral to a specialist who actually understands your mix of disease. MaryF