???Sujay, madwolf or ac77, picking your brains

Discussion in 'Fibromyalgia Main Forum' started by kooky, Jul 22, 2003.

  1. kooky

    kooky New Member

    Hi everyone: Would appreciate your thoughts on what are left ventricular dysfunction and mitral regurgitation. Both conditions diagnosed at once on an echocardiogram.

    I was not aware that I had both (since 2001) until I went through my medical record from a local hospital. I immediately sent a copy to my GP and was referred once more to a cardiologist. Further tests will be made to ensure that this has not developed further.

    Is left ventricular dysfunction and mild regurgitation acually the same as heart failure? Or can it lead to heart failure if not monitored? Can these lead to valve damage?

    I should have been given antibiotics when having tooth abcesses over a period of two months earlier this year! Am just very worried that this could have led to further deterioration......

    Also, I recently became breathless, chest pain and nail bed of the left thumb turned blue. I went to A & E and the oxygen saturation went down to 93% walking a few steps. The duty doctor mentioned that I should see a respiratory specialist???? According to him, it could be blood clots from my varicose veins in both legs attacked to the lungs and causing some sort problems with the pulmonary artery!

    I saw a cardiologist last week. An ECG came back normal, a chest x-ray I do not know the result yet. A cardiac MRI is in the pipeline and the cardiologist suggested a stress treadmill test. I am not sure that I will be able to do this though. I do become breathless on minimal exertion.
    The cardiologist mentioned that the episode when my nail bed turned blue in the left thumb, this could be angina!

    Many thanks for explaining what the two main symptoms are? It is quite important to be informed and therefore, self monitor and find out how best to maintain a fair baseline ... Regards. Kooky.
  2. kooky

    kooky New Member

    Am just putting this back on top of the page once more on the off chance that I do get a reply.
    If not, well, will just have to stop worrying I suppose!
    Thanks. Kooky.
  3. kgg

    kgg New Member

    I'm not a cardiac expert, and these really should be answered by your cardiologist. They would be the one looking at the reports on your tests and have actually examined you. They would have the info to answer your questions more accurately. Try calling the office and talking with their nurse. Ask these questions and see what they have to say. I understand the desire to have more info to be better informed. It is the only way to approach our health care. Keep us up to date how your tests go. -Karen
  4. sujay

    sujay New Member

    Don't give up too soon! We don't all get a chance to check the board every day, and some days I get interrupted before I've gotten very far. Also, I've been following your posts since my name came up, but I don't like to butt in unless I'm invited. (I do break that rule, but only when I think it's critical.)

    I haven't got a lot to add. So much depends on the degree of the problem and the overall clinical picture, something your own GP is in a much better position to judge. You may need to see a cardiologist, though. (I don't like the way your blood desaturates.) I also hope someon has considered the possibility of Anti-phospholipid Antibody Syndrome. That's pretty easy to check for, if your doctor thinks about it, and they might also be willing to do an ISAC Panel if they realize your symptoms might be due to a variant of APLA Syndrome induced by a pathogen. If they don't seem interested, let them know that the tests on the ISAC Panel are used to monitor DIC, and that you may have a non-overt form. This is not rocket science, just basic pathology, but if your doctor is already overworked you may be out of luck.

    Some of the other board members from the UK do seem to have thoughtful, dedicated physicians who are really trying to find out what's wrong. You may want to try to cannect with one of their physicians if you can. Doctors may be more willing to look into more unusual possibilities if more than one of their patients is asking about them.

    Good luck, and let us know how you fare. We're all rooting for you, even if we don't always have time to respond to your posts.

    Cheerio,
    Sujay
  5. kooky

    kooky New Member

    Many thanks for your response. I am sure you are extremely busy and am thankful nevertheless for your input.

    I will certainly mention this to my GP saying that I read an article somewhere and thought that it might be worth checking. I thought it could be due to pulmonary hypertension or old clots from the veins in the legs, thighs and groins somehow causing lung problems.

    There is still the desaturation of oxygen in the blood when walking though. I will have to ask docs if this could be due to angina, or LVF or pulmonary problems. It will certainly take a year or over to get these things investigated!


    The only 'nice' and understanding doctors' I have met are those who charge $200.00 hour!

    When I saw the cardiologist a week ago, he said I would have to wait 6-8 months for a cardiac MRI on the NHS (socialised health care system), but privately within a week. I have no choice but to wait and having it done on the NHS.

    I do belong to several ME groups here in the UK, and as yet, have not met any other CFS sufferer reporting a co-operative GP, except for private consultations.
    There is ample evidence of restrictions of health care at present. The UK spends 5% of its GDP on health care, France, Germany and Italy etc... spend 11%. Of course I have met nice and understanding doctors, but when it comes to referal to specialists or request further investigations and tests, they simply will not do it, not on the NHS anyway.
    I will try once more to find another GP which is very difficult. I did try two years ago and was not successful.
    I will certainly post message again when results come through. Take good care and thanks once more. Kooky.
  6. kooky

    kooky New Member

    Many thanks for your response. I am sure you are extremely busy and am thankful nevertheless for your input.

    I will certainly mention this to my GP saying that I read an article somewhere and thought that it might be worth checking. I thought it could be due to pulmonary hypertension or old clots from the veins in the legs, thighs and groins somehow causing lung problems.

    There is still the desaturation of oxygen in the blood when walking though. I will have to ask docs if this could be due to angina, or LVF or pulmonary problems. It will certainly take a year or over to get these things investigated!


    The only 'nice' and understanding doctors' I have met are those who charge $200.00 hour!

    When I saw the cardiologist a week ago, he said I would have to wait 6-8 months for a cardiac MRI on the NHS (socialised health care system), but privately within a week. I have no choice but to wait and having it done on the NHS.

    I do belong to several ME groups here in the UK, and as yet, have not met any other CFS sufferer reporting a co-operative GP, except for private consultations.
    There is ample evidence of restrictions of health care at present. The UK spends 5% of its GDP on health care, France, Germany and Italy etc... spend 11%. Of course I have met nice and understanding doctors, but when it comes to referal to specialists or request further investigations and tests, they simply will not do it, not on the NHS anyway.
    I will try once more to find another GP which is very difficult. I did try two years ago and was not successful.
    I will certainly post message again when results come through. Take good care and thanks once more. Kooky.
  7. kooky

    kooky New Member

    Yes, finally!
    would you let me know briefly the meaning of the Anti-phospholipid Antibody Syndrome and an ISAC Panel "if they realize your symptoms might be due to a variant of APLA Syndrome induced by a pathogen. If they don't seem interested, let them know that the tests on the ISAC Panel are used to monitor DIC," ... and yes, doctors here in London, are overloaded, overworked and under budgeted. However, I may be able to do this privately if you think it may help.
    I will also check a medical library or the internet for the above. Many thanks.

    Cheerio. Kooky.
  8. klutzo

    klutzo New Member

    If you go to the Hemex Labs website, I'll bet they have an explantion of the ISAC panel for you.
    There is a recent article in the library right here about left ventricular dysfuntion in CFS. Just click on "Library" and search for it there.
    75% of FMS patients have a Mitral Valve Prolapse (MVP) and many of us have regurgitation. Most doctors will not tell you what you can do to help this condition...I honestly think they do not know, and that scares me.
    You should do a websearch for Mitral Valve Prolapse Syndrome (MVPS), since this includes Fibro in it's symptom list and many of us have it. There is a weatlth of amazing info on it on the web.
    Here are some things to do now and in future to help make the regurgitation less of a problem:
    Drink one quart of water daily for every 50 lbs. body weight (sorry, I don't know your metrics!).
    Take at least 60 mgs. of the supplement, COQ10 with food that has some fat in it every day.
    Don't lift heavy weight items.
    If you have high blood pressure, make sure it is adequately treated, since high BP makes the regurgitation worse (boy did I find this out the hard way!).
    Klutzo
  9. nickname

    nickname New Member

    Just felt complelled to butt in here as I am a UK'er too. Yep, entirely agree with the GP/NHS situation - been there only too often, and have been forced to go private in the last three years to get some life. Have been bedbound with severe m.e. since 98, but had it since 91. Thats enough of me.

    I cannot even begin to try and help you with your post, but I can advise just a little on the ISAC panel/antiphospholipid syndrome. The ISAC panel was developed to look into the problem of hypercoagulation and how this leads to fibrin coating the blood vessels etc, therefore leading to reduced blood flow. The blood does not really become sticky per se, it is the formation of this fibrin and this tests looks for this, plus clots. With the antiphospholipid syndrome, also called Hughes Syndrome after Dr Hughes who discovered it, the blood becomes sticky, but this is different to fibrin formation. They are kind of similar but different.

    The ISAC panel is not available in this country, but was developed by Dr D Berg from Hemex in the USA - check it out on the web. The antiphospholipid syndrome test is available in this country, also via a GP if he thinks it is warranted.

    I know that the APL syndrome can be linked to Lupus - usually this will be positive in this disease. My very closest friend has lupus, has the APL syndrome, and is under the care at Guys/St Thomases, where Dr Hughes has his clinic. This is how I know about this problem, and I personally have the hypercoagulation problem, as diagnosed by my private consultant via live blood analysis. I do believe that this APL problem can be positive in other diseases.I read in one of the national newspapers fairly recently about someone who was misdiagnosed with MS, but who found out about the APL, and it turned out to be this - heparin was prescribed to thin the blood. You'll have to do a bit of googling yourself and find out more to present to those ever lovable GP's who seem to know not a lot about anything.

    M.E. has been referred to being a variant of this antiphospholipid syndrome, but to recap, the ISAC is quite a different test to the APL test.

    Best wishes
    nickname
    [This Message was Edited on 07/24/2003]
    [This Message was Edited on 07/24/2003]

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