Discussions By Condition: I cannot get a diagnosis.

Been to 60 Doctors cannot get help

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: Hello Kitty
  • October 30, 2006
  • 03:00 AM

I have been dealing with a plethora of symptoms on and off for the past ten years and I CANNOT get a diagnosis. I am normally 108 lbs. and healthy and active woman who is a raw vegan, which means I eat no animal products or cooked food either, and I have bouts where I will literally blow up to 165 lbs. in less than 6months and have nausea, darkening of my skin, pregnancy mask, migraines, fatigue, achy joints,loss of libido, numbness in my hands, cold hands, cold feet, weepiness, depression, loss of hair, PMS, puffy face, puffy fingers, heart palpitations, acne, and hot flashes. I have seen every type of specialist and my blood work comes back normal. I am interested in finding a doctor who deals with hormonal imbalances in either the New York City and/or New Jersey area. If someone has an idea please contact me with some information. I will even travel out of state for a good doctor. :rolleyes:

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17 Replies:

  • Must start a regular healthy diet including meat....If you try this symptoms will resolve
    Anonymous 42789 Replies
    • October 30, 2006
    • 05:18 AM
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  • Thanks for you input, however, these symptoms began prior to me becoming a vegan. So, I think it is a hormonal glitch. Thanks again. Must start a regular healthy diet including meat....If you try this symptoms will resolve
    Hello Kitty 6 Replies
    • October 30, 2006
    • 05:24 AM
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  • I have been dealing with a plethora of symptoms on and off for the past ten years and I CANNOT get a diagnosis. I am normally 108 lbs. and healthy and active woman who is a raw vegan, which means I eat no animal products or cooked food either, and I have bouts where I will literally blow up to 165 lbs. in less than 6months and have nausea, darkening of my skin, pregnancy mask, migraines, fatigue, achy joints,loss of libido, numbness in my hands, cold hands, cold feet, weepiness, depression, loss of hair, PMS, puffy face, puffy fingers, heart palpitations, acne, and hot flashes. I have seen every type of specialist and my blood work comes back normal. I am interested in finding a doctor who deals with hormonal imbalances in either the New York City and/or New Jersey area. If someone has an idea please contact me with some information. I will even travel out of state for a good doctor. :rolleyes:Hi. sorry to hear about your problems, Your symptoms sound very much like mine, and i too have not been able to find out what it is, should you find out please could you let me know, i have posted on here too to try and find out what it is. if i find anything that relieves it i will glady let you know.
    witsend 1 Replies
    • October 30, 2006
    • 03:45 PM
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  • I have been dealing with a plethora of symptoms on and off for the past ten years and I CANNOT get a diagnosis. I am normally 108 lbs. and healthy and active woman who is a raw vegan, which means I eat no animal products or cooked food either, and I have bouts where I will literally blow up to 165 lbs. in less than 6months and have nausea, darkening of my skin, pregnancy mask, migraines, fatigue, achy joints,loss of libido, numbness in my hands, cold hands, cold feet, weepiness, depression, loss of hair, PMS, puffy face, puffy fingers, heart palpitations, acne, and hot flashes. I have seen every type of specialist and my blood work comes back normal. I am interested in finding a doctor who deals with hormonal imbalances in either the New York City and/or New Jersey area. If someone has an idea please contact me with some information. I will even travel out of state for a good doctor. :rolleyes:I know it seems simple, but I just got back from the Mayo Clinic (I waited a year to get in!) and the doctors there are big and vitamin B shots. They say that alot of people with our problems are low in vitamin B and that their body just doesn't absorb it. Have you ever had your levels checked? If not I would. If your levels are low, they can cause many of the symptoms you are having believe it or not!!! And the treatment is simple, you just go in once a month for a vitamin shot. Good luck to you.
    captwife38 8 Replies
    • October 30, 2006
    • 04:07 PM
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  • The darkening of the skin (especially) and some of the other symptoms you mention are typical of Addison's disease. This is a problem with the adrenal glands. I am not sure what would explain your huge variability in weight though. An endocrinologist would be the best person to consult. Quite low blood pressure (on standing) is another symptom of this disease and it can be identified through high potassium and low sodium levels in the blood. But only an endocrinologist would know which are the correct tests (and these involve the levels and response rates of various hormones).
    Anonymous 42789 Replies
    • October 30, 2006
    • 05:15 PM
    • 0
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  • The darkening of the skin (especially) and some of the other symptoms you mention are typical of Addison's disease. This is a problem with the adrenal glands. I am not sure what would explain your huge variability in weight though. An endocrinologist would be the best person to consult. Quite low blood pressure (on standing) is another symptom of this disease and it can be identified through high potassium and low sodium levels in the blood. But only an endocrinologist would know which are the correct tests (and these involve the levels and response rates of various hormones). I agree with this poster that you need to see an endocrinologist. They are familiar with your symptoms which sound hormonal related. Addison's, PCOS, Cushings and other conditions are more commonly diagnosed by an endocrinolgist. Good luck.
    fdgarrett 4 Replies
    • October 30, 2006
    • 08:42 PM
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  • Hi. sorry to hear about your problems, Your symptoms sound very much like mine, and i too have not been able to find out what it is, should you find out please could you let me know, i have posted on here too to try and find out what it is. if i find anything that relieves it i will glady let you know. Hey thanks for the compassion, it is nice to know I am not alone, but I will let you know. I am a very persistent person and I am seeing a nutritionist tomorrow and then I am going to a woman who deals with hormonal imbalances. Have you ever been tested for a hormonal imbalance? Let me know what you have been tested for.
    Hello Kitty 6 Replies
    • November 1, 2006
    • 02:17 AM
    • 0
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  • Please have your physicain rule out Chiari Maformation by taking an MRI. Please do a google search on Chiari malformation for an exact definition, but basically, a chiari malformation is where the tonsils at the base of your brain (where the nerve endings are) are compressed into the top of the spine. People can live like this until any number of symptoms come out. It is treatable with decompression surgery, and sometimes the patient goes completely back to normal. I was not going to register on this web site, but I had to let you know of this treatable condition. A member of my family was misdiagnosed for two years, because she kept coughing and spitting up saliva. She also started to have a problem walking, just as times. The doctors were treating her for acid reflux or alliergies. One physician even became annoyed, and said, I only have 15 minutes, tell me about one thing. Yet, everything was related. It was not until much later, on her own she discovered she had this condition. She had the surgery and thank God she is better now.
    Anonymous 42789 Replies
    • November 1, 2006
    • 03:00 AM
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  • I have been to endocrinologists, neurologists, gynecologists and many other physicians. I have been tested for everything and all of my blood works come back normal. I am at my wit's end with this, but thank you for your suggestion. The darkening of the skin (especially) and some of the other symptoms you mention are typical of Addison's disease. This is a problem with the adrenal glands. I am not sure what would explain your huge variability in weight though. An endocrinologist would be the best person to consult. Quite low blood pressure (on standing) is another symptom of this disease and it can be identified through high potassium and low sodium levels in the blood. But only an endocrinologist would know which are the correct tests (and these involve the levels and response rates of various hormones).
    Hello Kitty 6 Replies
    • November 1, 2006
    • 03:26 AM
    • 0
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  • hey- first off, get a SALIVA hormone test, these are more accurate. they are expensive but worth it. You can usually get them from a real pharmacy, like those in hospitals and clinics. I would advise finding a good naturopath doctor in your area......another resourse to look at is:Doug Kauffman's The Fungal Link; its a book. check out his website.www.knowthecause.comI wish you all the best, I know how frustrating it can be.....FizzyD
    Anonymous 42789 Replies
    • November 1, 2006
    • 04:16 AM
    • 0
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  • hey- first off, get a SALIVA hormone test, these are more accurate. they are expensive but worth it. You can usually get them from a real pharmacy, like those in hospitals and clinics. I would advise finding a good naturopath doctor in your area...... another resourse to look at is:Doug Kauffman's The Fungal Link; its a book. check out his website.www.knowthecause.com I wish you all the best, I know how frustrating it can be.. FizzyD HI, I am definitely going to do a saliva test and thanks for the link, it seems really interesting and worth a shot. I appreciate the advice. have a good one.
    Hello Kitty 6 Replies
    • November 1, 2006
    • 04:31 AM
    • 0
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  • I have been dealing with a plethora of symptoms on and off for the past ten years and I CANNOT get a diagnosis. I am normally 108 lbs. and healthy and active woman who is a raw vegan, which means I eat no animal products or cooked food either, and I have bouts where I will literally blow up to 165 lbs. in less than 6months and have nausea, darkening of my skin, pregnancy mask, migraines, fatigue, achy joints,loss of libido, numbness in my hands, cold hands, cold feet, weepiness, depression, loss of hair, PMS, puffy face, puffy fingers, heart palpitations, acne, and hot flashes. I have seen every type of specialist and my blood work comes back normal. I am interested in finding a doctor who deals with hormonal imbalances in either the New York City and/or New Jersey area. If someone has an idea please contact me with some information. I will even travel out of state for a good doctor. :rolleyes:Have a doctor test you for B12 vitamin deficiency. I never realized what a part of our overall health this particular vitamin plays. I have been thru a lot as well. Let me know how it goes.
    Anonymous 42789 Replies
    • November 1, 2006
    • 05:19 AM
    • 0
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  • Have a doctor do some bloodwork to check for a B12 vitamin deficiency. I never realized how IMPORTANT this particular vitamin is to our overall health until I was diagniosed. Hope this helps.
    Anonymous 42789 Replies
    • November 1, 2006
    • 05:25 AM
    • 0
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  • Have a doctor do some bloodwork to check for a B12 vitamin deficiency. I never realized how IMPORTANT this particular vitamin is to our overall health until I was diagniosed. Hope this helps. you are the 2nd person to suggest this and I have had it checked and it was a little low, but I will get it checked again. thanks for the information.
    Hello Kitty 6 Replies
    • November 1, 2006
    • 05:33 AM
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  • TO hello Kitty:YOur symptoms are similar with mine. DO yourself a favor, get checked for an inflammation protein called beta 2 microglobulin. If it comes back normal, you can rule out any sort of inflamation disease. THis is an infamous indicator of viral infections as well. Get checked for HHV viruses,(1-7) and HIV If not normal, then speak to your PCP about vascular/neurology doctors. Skin can turn red when nerves are being damaged underneath the skin or veins are being damaged.
    Anonymous 42789 Replies
    • November 2, 2006
    • 01:44 AM
    • 0
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  • Your sympton's sound a lot like mine, im also fairly certain mine is hormonal related. My main sympton though is when i get around anything that smell's strongly my lung's fill with fluid and i cant breathe to good for a few hrs after. Ive been tested for asthma and allergies but those are negative. The tube's going from nose to ear keep collapsing and the left one is not coming back up now and it's also sucked in my left ear drum. They tried thru medicine to get it back up but it didn't work and now they say i need surgery to fix it. The left ear also bleed's a lot probly from the ear drum that's down. My gland's behind the ear's are swollen, 3 in my neck are swollen, and 1 in my leg. I also seem to have no immunity anymore, last year i had 14 cold's and 2 flu's and they last a long time. Im also non-stop getting fungus and bacterial infection's, i have 4 going right now. My body temperature is low has been for 3 yr's, averages about 97.6 the only time it's above 98 is when im sick. My blood pressure is suprisingly low only about 94/64 and i also smoke so that seem's oddly low. My hair is falling out and going grey, i have a lack of appetite a lot, very tired and fatigued, lot of thing's. Ive been to about 23 doctor's now and been tested for diabetese hiv vitamin b deficiency viral infection cancer asthma allergies few other's. The last doctor was a total loss, he wanted me to start taking prozac for my depression wich is just another sympton i have, i told him ill be undepressed when we find out what's wrong. I also needless to say lost my job, no matter how good a worker you are, you leave work 12 time's in a month for medicated oxygen your gone.
    Anonymous 42789 Replies
    • November 2, 2006
    • 02:16 AM
    • 0
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  • Hi, There are some really awesome docters at the Houston,Texas area you should try looking there. They have figured out the craziest things. Youu should look around there f you can or I can find out from my Aunt and post it She went there before.
    LAS707 5 Replies
    • November 2, 2006
    • 02:52 AM
    • 0
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