Discussions By Condition: I cannot get a diagnosis.

Mysterious multiple PE's No one can figure it out

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: blindwolfxing
  • September 12, 2009
  • 02:16 AM

I am a 26 yr old mother of 4 who doesn't smoke or do any street drugs and am not on birth control. I was Hospitalized on May29 for a PE in my Rt lower lobe. I was tested for factor V Liden and it was neg. I was sent home after a week on lovenox and coumadin. I have since clotted 3 more times also in my lungs. They have tested for several things all neg except my Protein S and Protien C which tested low due to the fact they did not take me off of my coumadin before testing. I was told this week(by my pulmonologist) that the severe pain i continue to experience and the shortness on breath I have is either all in my head or just plursey that was meerly "flaring up" as it never really goes away. I am at a loss and don't know what to ask them to do next as my primary doc is just as puzzled as I am. I also want to note that all tests have showed the clots did not come from my legs and I have no family history of clotting. Please help.

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6 Replies:

  • Hi Blind... I have experienced plursey when I was younger, about the same age as you (I'm now in my 40's). Eventually I stopped having the pain and attacks and the medical profession never did find out the cause. Personally, I believe that the symptons you are experience are nutritionally related. I've been told by Eastern medicine professionals that pain and symptons show up in the weakest part of our body - and most of these weaknesses are brought on by our lifestyles. Although you are doing a lot of great things health wise - no smoking, drugs. Foods you eat like cafinated beverages, soft drinks, etc. could be taking away nutrition from your body. Also, lack of exercise, water and not enough greens (the majority of americans don't eat enough greens) could add to a nutritional dificency that is making you more susesptable. Based on my own health issues and personal experiences I have a different suggestion and course of treatment to suggest (than most people). I am not a doctor or medical professional. This is just my own line of thinking...Western Medicine isn't working. So it's time to explore alternative medicine (which is typically Eastern). Thought #1 - your body is starved for nutrition. It needs to be able to use what you are eating. To this end I would suggest entering a raw food diet program that has helped many "uncurable" health cases. There are centers all across the US, the one I remember is in Union City, Michigan (I think they call the town Hodunk). It is called the creative health institute and can be found online (I do not work for or own this organization). I attended there in the past and made great progress. The raw food program, in the 1st week, put you into a detox and high nutrion program where you drink a ton of greens and nutritious liquids. Tastes terrible, but has been known to work miracles. It is possible to change your lifestyle and solve many of these illnesses. Let me just say though, that it is difficult to go 100% raw and can often take a number of starts and stops before it takes. That's okay. The idea is to make a significant change to your lifestyle. Thought #2 - in Eastern medicine, they don't look for a cure to the symptons, they look at the symptons and try to trace them to the root of the cause and treat the root. This is the opposite of Western medicine. I have found an accupuncturist here in Michigan who is amazing, in the last month she has gotten my vision so I can see again (and this is after spending 6 weeks with an eye doctor who couldn't get me a prescription that would work, as it turns it, it wasn't the prescription). The vision issue, according to her was a result of stress and a liver issue. (I had been in a major car accident.) Thought #3 - I am not saying that aren't facing major health issues, but while you are waiting to get into your next "specialist," why not spend a couple of weeks in a high nutrition program and see if some of these problems start going away. I'll be curious to see what you think.
    Salmey 3 Replies
    • September 12, 2009
    • 05:38 AM
    • 0
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  • Coumadin? Is it long term? My mother was told (For PE) that it was not long term. Its a year later and she is still on Coumadin. I work with coumadin patients everyday and sorry to say most PE is not short term. Good news though, I work for a company that provides home testing monitors for anticoagulation. So you can check your INR ranges at home more frequently to help you stay in range. It is just like a diabetic monitor. Sorry I dont have better news, but if you want to get a meter we work with insurance to get you a monitor. If you would like to get in touch with me for some information about getting a monitor email me at jsmusic1025@yahoo.com I am a 26 yr old mother of 4 who doesn't smoke or do any street drugs and am not on birth control. I was Hospitalized on May29 for a PE in my Rt lower lobe. I was tested for factor V Liden and it was neg. I was sent home after a week on lovenox and coumadin. I have since clotted 3 more times also in my lungs. They have tested for several things all neg except my Protein S and Protien C which tested low due to the fact they did not take me off of my coumadin before testing. I was told this week(by my pulmonologist) that the severe pain i continue to experience and the shortness on breath I have is either all in my head or just plursey that was meerly "flaring up" as it never really goes away. I am at a loss and don't know what to ask them to do next as my primary doc is just as puzzled as I am. I also want to note that all tests have showed the clots did not come from my legs and I have no family history of clotting. Please help.
    Anonymous 42789 Replies
    • September 12, 2009
    • 09:21 PM
    • 0
    Flag this Response
  • Hi Blind... I have experienced plursey when I was younger, about the same age as you (I'm now in my 40's). Eventually I stopped having the pain and attacks and the medical profession never did find out the cause. Personally, I believe that the symptons you are experience are nutritionally related. I've been told by Eastern medicine professionals that pain and symptons show up in the weakest part of our body - and most of these weaknesses are brought on by our lifestyles. Although you are doing a lot of great things health wise - no smoking, drugs. Foods you eat like cafinated beverages, soft drinks, etc. could be taking away nutrition from your body. Also, lack of exercise, water and not enough greens (the majority of americans don't eat enough greens) could add to a nutritional dificency that is making you more susesptable. Based on my own health issues and personal experiences I have a different suggestion and course of treatment to suggest (than most people). I am not a doctor or medical professional. This is just my own line of thinking...Western Medicine isn't working. So it's time to explore alternative medicine (which is typically Eastern). Thought #1 - your body is starved for nutrition. It needs to be able to use what you are eating. To this end I would suggest entering a raw food diet program that has helped many "uncurable" health cases. There are centers all across the US, the one I remember is in Union City, Michigan (I think they call the town Hodunk). It is called the creative health institute and can be found online (I do not work for or own this organization). I attended there in the past and made great progress. The raw food program, in the 1st week, put you into a detox and high nutrion program where you drink a ton of greens and nutritious liquids. Tastes terrible, but has been known to work miracles. It is possible to change your lifestyle and solve many of these illnesses. Let me just say though, that it is difficult to go 100% raw and can often take a number of starts and stops before it takes. That's okay. The idea is to make a significant change to your lifestyle. Thought #2 - in Eastern medicine, they don't look for a cure to the symptons, they look at the symptons and try to trace them to the root of the cause and treat the root. This is the opposite of Western medicine. I have found an accupuncturist here in Michigan who is amazing, in the last month she has gotten my vision so I can see again (and this is after spending 6 weeks with an eye doctor who couldn't get me a prescription that would work, as it turns it, it wasn't the prescription). The vision issue, according to her was a result of stress and a liver issue. (I had been in a major car accident.) Thought #3 - I am not saying that aren't facing major health issues, but while you are waiting to get into your next "specialist," why not spend a couple of weeks in a high nutrition program and see if some of these problems start going away. I'll be curious to see what you think. I want to start out by thanking you for your reply as any idea is worth looking into. However I was instructed to change my diet already due to the fact that I eat too many greens which provide vitimin K which causes your blood to clot and works against tje coumadin. I can not take myself off of this drug even though I continue to clot while on it I do not clot as often or present with as large of clots. So it is in my best intrest to remain on this drug and the required diet that goes along with it.
    blindwolfxing 3 Replies
    • September 13, 2009
    • 08:07 PM
    • 0
    Flag this Response
  • Coumadin? Is it long term? My mother was told (For PE) that it was not long term. Its a year later and she is still on Coumadin. I work with coumadin patients everyday and sorry to say most PE is not short term. Good news though, I work for a company that provides home testing monitors for anticoagulation. So you can check your INR ranges at home more frequently to help you stay in range. It is just like a diabetic monitor. Sorry I dont have better news, but if you want to get a meter we work with insurance to get you a monitor. If you would like to get in touch with me for some information about getting a monitor email me at jsmusic1025@yahoo.com I want to thank you for your info. I did just hear about that and am interrested in seeing if I can get one I am on medicaid tho is that something they cover?
    blindwolfxing 3 Replies
    • September 13, 2009
    • 08:10 PM
    • 0
    Flag this Response
  • Have they tested you for Heparin Induced Thrombocytopenia (HIT)?
    Anonymous 42789 Replies
    • September 14, 2009
    • 02:22 AM
    • 0
    Flag this Response
  • Have they tested you for Heparin Induced Thrombocytopenia (HIT)? No they have not due to the fact I had never received heparin until after the probelm began.
    blindwolfxing 3 Replies
    • September 14, 2009
    • 10:27 PM
    • 0
    Flag this Response
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