I’m grateful for the luck I have : I had the chance to cross the road of 2 or 3 amazing doctors.
In my twenties, I have had two thrombosis (having even one is extremely rare on young people). The first time, in a public hospital, they made all the routine checks and on my blood and found nothing abnormal and kept me one week in hospital for diagnosis and resting.
The second time, 7 years passed, I’ve been in another hospital (a private one) emergency services. They gave me a medication to treat the blood clot and sent me back home 30 min later with crutches, anticoagulants for 6 months ("see with your doctor to get more") and painkillers.
So, there I were with what looked like some unfortunate condition and nobody to care for it.
In despair, I called the first doctor from the public hospital. On the phone, he acknowledged my situation and said that he would talk about it with his colleagues. Then he hung up.
The same doctor called me back a day after saying me that he had an idea about my situation but even if that would be pretty strange / rare, he wanted me to take a scanner, with some weird protocol to be able to see things in veins you normally don’t see without.
The scanner staff said to me that they barely never did this sort of things before (only one of them already did it).
Well: the result was that my inferior vena cava was malformed. The doctor said called me back and on my appointment he said : « I believe that, during all your life, you have been unable to walk a long time without having your legs tired, because your blood income have always been insufficient ».
Boy did that resonate in me : I always felt tired, never in pain just my tired legs, and always thought that I was just not sportive enough, neither I had enough willpower to do sports. No it was not lack of willpower : it was that my legs just cannot get enough blood for running or walking enough.
He offered me to undergo a surgical procedure to widen my vein. It was a rare enough procedure that another doctor, who didn’t knew it, said that I shouldn’t do.
It deferred my decision by maybe two years.
Then, I had enough to be constantly tired and I decided to do it anyway.
It was a pure relief in my life : I’m now able to walk like everyone else. I’m still too fat because I never had the habit to do sports during the (almost) three first decades of my life. But I feel much better than I’ve always been.
That is just because someone cared enough. Ironically, it was a doctor from a public hospital, who is not paid on the number of consultation he does. Don’t know if it’s relevant but my theory is that it is.
Neurogenic thoracic outlet syndrome is pretty difficult to diagnose if you don’t clearly have an extra rib. I have it, and it comes on when my neck muscles are tight - my scalenes are unfortunately just structured such that they “scissor” my brachial plexus. I have exercises and stretches that help, and in times of excess stress a good massage goes a long way.
A friend had the vascular form and ended up with a blood clot in his arm as the first symptom, which was fortunately picked up at the ER just before it developed into a pulmonary embolism - he was lucky to be in the hospital already when the PE developed. He was on blood thinners for months and still hasn’t regained totally normal function in his arm due to reduced blood flow.
Treatment for non-obvious disease is awful and slow. I feel mysteriously ill with severe breathing problems two years ago that was not COVID related and my doctors all scratched their heads. My last one just eventually shrugged and told me to live with it.
I can't afford a personal doctor who actually cares, so I've had to manually look up possible conditions and request tests and hope for useful results. My empathy goes out to anyone who has struggled with chronic illness.
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[ 2.8 ms ] story [ 27.3 ms ] thread(source: I am diagnosed with type 3 and can relate to many of the things in your story)
In my twenties, I have had two thrombosis (having even one is extremely rare on young people). The first time, in a public hospital, they made all the routine checks and on my blood and found nothing abnormal and kept me one week in hospital for diagnosis and resting.
The second time, 7 years passed, I’ve been in another hospital (a private one) emergency services. They gave me a medication to treat the blood clot and sent me back home 30 min later with crutches, anticoagulants for 6 months ("see with your doctor to get more") and painkillers.
So, there I were with what looked like some unfortunate condition and nobody to care for it.
In despair, I called the first doctor from the public hospital. On the phone, he acknowledged my situation and said that he would talk about it with his colleagues. Then he hung up.
The same doctor called me back a day after saying me that he had an idea about my situation but even if that would be pretty strange / rare, he wanted me to take a scanner, with some weird protocol to be able to see things in veins you normally don’t see without.
The scanner staff said to me that they barely never did this sort of things before (only one of them already did it).
Well: the result was that my inferior vena cava was malformed. The doctor said called me back and on my appointment he said : « I believe that, during all your life, you have been unable to walk a long time without having your legs tired, because your blood income have always been insufficient ».
Boy did that resonate in me : I always felt tired, never in pain just my tired legs, and always thought that I was just not sportive enough, neither I had enough willpower to do sports. No it was not lack of willpower : it was that my legs just cannot get enough blood for running or walking enough.
He offered me to undergo a surgical procedure to widen my vein. It was a rare enough procedure that another doctor, who didn’t knew it, said that I shouldn’t do.
It deferred my decision by maybe two years.
Then, I had enough to be constantly tired and I decided to do it anyway.
It was a pure relief in my life : I’m now able to walk like everyone else. I’m still too fat because I never had the habit to do sports during the (almost) three first decades of my life. But I feel much better than I’ve always been.
That is just because someone cared enough. Ironically, it was a doctor from a public hospital, who is not paid on the number of consultation he does. Don’t know if it’s relevant but my theory is that it is.
A friend had the vascular form and ended up with a blood clot in his arm as the first symptom, which was fortunately picked up at the ER just before it developed into a pulmonary embolism - he was lucky to be in the hospital already when the PE developed. He was on blood thinners for months and still hasn’t regained totally normal function in his arm due to reduced blood flow.
I can't afford a personal doctor who actually cares, so I've had to manually look up possible conditions and request tests and hope for useful results. My empathy goes out to anyone who has struggled with chronic illness.