Hughes Syndrome & Breathing Difficulty

[Floss_28]

Hello, I'm just looking for a bit of advise. I've struggled with breathing difficulties all of my life, I have a severely deviated septum that's already been operated and also have Rhinitus and take several sprays and drops a day to releave the swelling. Over the last 4-6 months though, I have been having chest tightness and pains and feel like my lungs are struggling to get the air in. At first I was diagnosed as asthmatic and was given pumps to trial which have helped. However, my spirometer and peak flow tests came back as normal. My GP has since advised that 2 blood tests I had earlier this year for problems with my periods have come back with a high reading of Lupus Anticoagulant and that my blood is clotting too easily, and now thinks that has something to do with it. I have been referred to the hospital and am waiting my letters to come through, but have looked into this online and come across Hughes Syndrome. Is breathing difficulties and chest pains a common symptom of Hughes or any other blood clotting illness? I am quite worried it could be something more serious than asthma, but the pump does help relieve some of the tightness and pains. Any advise or help is greatly appreciated!

[MaryF Administrator]

Hi and welcome, if you have a positive test, then yes you do need further investigation with those symptoms, if you are in the UK here is the list of specialists:  hughes-syndrome.org/self-he...   Certainly if there is a suspicion of this disease coupled with test results, with the right consultant more detailed investigations are likely to take place.  ps there are three tests normally recommended two more other than the one which was done:  hughes-syndrome.org/about-h...   MaryF

[Floss_28 in reply to MaryF]

Hello, thank you for your response! So is it possible if it is Hughes that that's what's causing the chest pains and tightness?

[MaryF Administrator in reply to Floss_28]

We are not medically trained, we all get all sorts of pains, you do need to really have a sit down with a medical professional who is up to speed with the condition, autoimmune conditions can cause inflammation across the board.  I am not saying it is not possible, but you need help from the right consultant and GP.   hughes-syndrome.org/about-h...   hughes-syndrome.org/about-h...

  MaryF

[Lure2]

Hi and welcome to this friendly site!

If you get more new, severe and uncommon chestpain I think you should visit a hospital as an emergency-case. 

It is possible to have chestpain with APS. I have had that and I have Lupus Anticuagulant. I have done a lot of Echocardiografies with doppler. 

I think you should follow Marys advices and absolutely get a Specialist who knows what to look for. That is very important!

Best wishes from Kerstin in Stockholm

[Floss_28 in reply to Lure2]

Thank you for the advise! I'm currently waiting for my referral paperwork to come through before I can speak to anyone, but hopefully it will be soon!

[GinaD]

Ditto above comments.  APS has only recently been named and documented.  Most doctors have never heard of it, or if they have, they only know that it often causes heart attacks, ischemic strokes, DVTs  and pregnancy loss.  Doctors who have treated many APS patients have learned that (here is a duh! moment -- I mean "aren't  these people doctors who should figure this out?) the circulatory system goes nearly everywhere in the body, and clots can form nearly everywhere in the body (usually clots follow inflammation, and then create more inflammation in that spot, which then creates more clots in that spot.

So, experienced APS docs will accept that a patient's renal issues, hepatic issues, migraines, hip pain, GI tract issues, and more  -- can all result from an APS induced clot effecting that area of the body.  But doctors who are newbies to this disease only recognize that first big 4:  stroke, DVT, heart attack, pregnancy loss. And we, as a group, have experienced or read about fellow patients who had to fight like a pit bull to get a doctor to recognize that  -- say -- recurrent kidney issues were due to recurrent and persistent clots effecting the kidneys and all was resolved when the proper anticoagulation was achieved.  -- Which is why we as a group always urge patients recently diagnosed to seek the care of a physician experienced in treating APS.