Never Got Tested for STICKY BLOOD in 25 years

[Twitchyeyeguy]

Ok now this is totally UNBELIEVABLE!! I was hospitalized in 1992 for thrombocytopenia because of platelets below 10. I was in the hospital and the Hemotologist put me on a corticosteroid called Prednisone to help so I wouldn’t bleed to death and my blood levels improved over weeks and months. I had a DVT in one of my legs and hospitalized and ended up wearing prescription compression stockings to help the circulation in that bloated leg. Time passed and I ended up with having a huge seizure. Was put on meds for that too. I was monitored regularly since the first mishap over the years and regularly had fatigue, major dizzy spells and vertigo. These instances would occur randomly. My family dr at the time said it was depression I had and prescribed me antidepressants. They didn’t seem to work at all for the few years of taking them. Even in 2017 I visited an Ear, Nose,Throat doctor and I got tested for balance issues to maybe to have something to do with the inner ear. Tests for that showed up nothing. From about the age of about 27 until 52 I thought that my mind was playing weird games on me due to frequent dementia-like feelings that lasted a few minutes long. I thought that I was losing my mind! Anyway I got another DVT around 10 years later on my other leg. Meanwhile through the years I was on Prednisone to thicken up my blood or Warfarin to thin it which depended on my bloodwork results. In 2017 my kidney doctor sent me to a Hemotologist colleague of hers to get a blood test for something because she had a suspicion I had a certain autoimmune disease which she wrote it down on a piece of paper and gave it to me. The Hemotologist that she sent me to did blood tests and the result was the disease that the kidney doctor wrote down for me. She was BANG ON! All these years had passed and I told about my main symptoms to the original specialist and I didn’t get tested for STICKY BLOOD (anti phospholipid syndrome) My blood thinner was immediately increased and now I barely have any of the symptoms anymore. Thick blood not circulating in the head would definitely cause all of those cognitive problems and luckily I didn’t have a stroke in the past 25 years or more of not being properly diagnosed for it. Now what is the ;@#%!! EXCUSE of not figuring this out when the pieces of the puzzle are all there??!

[Hidden]

well its great that now you found out the answers to all your health issues.

hope now you can start enjoying your life , dont forget that a good healthy diet will go a long in preventing unnecessary health issues.

[Buchaboy in reply to Hidden]

Yeah I have to be on a healthy diet because I got diagnosed for kidney disease last year too the same year I got diagnosed for APS and have watched my intake of potassium,salt,phosphorus and other foods and now stabilized.

[andyswarbs]

Diagnosis of auto-immune illnesses can be notoriously difficult. I have come across several people report poor diagnosis that has gone on for 10 years or more. Well done for finding what your illness is and very glad you are stroke free.

[Penel]

Unfortunately it’s a fairly rare autoimmune condition, and as Andy has said, it can often take years for these things to be recognised.

Perhaps the Sticky Blood / Hughes Syndrome group on HU may be a useful one to visit, if you haven’t already?

I also came across this site on line.

aps-support.org.uk

[Hidden]

Which antibodies were you positive with? Another question is, did cog problems disappear since you were put on the right treatment? If you wouldn't mind me asking, that is, of course.