The call from Rheumatologist/Hematology was short.

[SWAlexander]

A week ago, after blood was drawn, I sent my Dr. this APS-related article:

B9 and B12 vitamin status in patients with antiphospholipid syndrome, its relationship with the course of disease and lesions of the cardiovascular system​

https://www.rheumatology.kiev.ua/en...nya-ta-urazhennyam-sercevo-sudinnoi-sistemi-2​

The call was short.
dr: “You have APS and nothing will change that. It has to do with the immune system.”
me: Yes I know I have lupus, VWF and APS among other diagnoses.
dr "Yes, that has something to do with lupus."
dr "All the best Mrs. X."
me: Thank you for calling.

I know she did not read the article because she did not understand that folic acid (B9 ) would help some since my folic acid is very low.
Now I have to find another hematologist.
Oh well. By now I´m used to this.

 

[SlamDancin]

Not surprised to read this at all. I can tell my doctor that I made a complete recovery from CFS miraculously and that may not even get charted.

 

[Wishful]

I can tell my doctor that I made a complete recovery from CFS miraculously and that may not even get charted.

Of course, for him that just proves that it was psychosomatic.

 

[Judee]

Just a thought and I don't know if you can do this but you might want to search for a hematologist/oncologist. The two I've dealt with...one with my job at an answer service and another when my Mom needed a hematologist were both very nice people. I think because they are dealing with so many sad situations maybe. ??

Of course, I could be wrong but it's just an idea.

 

[SWAlexander]

search for a hematologist/oncologist

This would be a very good idea, but the next specialist is 150 KM (one way) away. Thank you.

I had a very good oncologist but he left after a run-in with his boss. He was the one who discovered herpes, low folic acid and confirmed lupus.
(Folsäure is Folic acid.)

I overheard his boss telling him in the hallway not to make so many tests and spend so much time with me, because "she is not a private or self-paying patient". It is all about making money.
The (good) problem is, the numbers in the blood test results are going steadily down and I believe APS is slowly reversing because I´m taking B9. However, I can´t be sure since I have no way of checking the progress.

I wish I could find out where this oncologist is working now, but I can´t get this information.

In other words, it is always the patient who is royally screwed.