Discussions By Condition: I cannot get a diagnosis.

I am tired of being told its all in my head... 12 yrs...no diag yet

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: grabski17
  • April 28, 2008
  • 01:33 AM

:(Hello,
It all started 12 years ago, I was a healthy 17 yr old girl, active, happy, etc. I began to just feel tired all of the time, lost my appetite, and just didn't feel like doing anything. Then I noticed a lump on the right side of my neck. Went to my doc, cause I just wasn't feeling right, and then I was in an oncologist's ofc with my mother and they were telling me we needed to perform a biopsy. Lab results came back negative for lymphoma. Then I saw a infectious diseases doc, and they ran every test they could think of, even HIV, and they all came back negative. My symptoms subsided, so we thought nothing of it...
At 19, Had two more lumps, one on the left side of my neck and one on the left groin side. Had another biopsy to be sure, and it was also negative. Didn't think anything of it after that.
At 20, began to get really bad tendonitis in my shoulders, wrists and elbows, both sides....Just thought it was playing the flute for so many years, and subsequently gave it up....
24.... Began getting migraine headaches...started as once a month, then twice, then once a week, until it got to the point where I was getting them one every other day. Began taking Topomax daily...
24..Diagnosed with endometriosis. This was after 8 yrs of doctors telling me that my cramping was completely normal, and that 7=9 days for the bleeding was normal. This was when I began to become an advocate for my health and not listen to doctors when they told me nothing was wrong...
25...dagnosed with arthritis, both knees and ankles....after the ANA and RF tests came back inconclusive...
27....Diagnosed with GERD and Barrett's esophagus..., yes, at 27....My GI doc was shocked... THen I was also diagnosed with Asthma, and also began to have panic attacks.
All during those years, I would have severe abdominal cramping that would land me in the emergency room and would go away as quickly as it came. Thy have run every test possible for the abdominal pain, but everything came back inconclusive.

28...began to think that there was NO way I was this unhealthy and everything was unrelated...started to look into seeing my PCP to see if there was anything we could do...
Now I am 29, going on thirty in about two months... I have seen two rheumatologists, three GI docs, an allergist/immunologist, neurologist, and my PCP (which I have switched) and everything has come back negative. Thyroid disease and diabetes runs in my family, but I have tested negative for these as well as testing negative for Lupus, RA, immune deficiency disorders, I am not allergic to ANYTHING......
Also, I have an enlarged lymph node on the right side of my neck that has been there about 9 yrs, and another one on the left side that has been there about 6 yrs, and one on the right groin side that has been there about 6 yrs. I wake up every single morning stiff and in pain, I have a dull headache every day, I am dizzy every day, I have IBS, terrible heartburn, my hands when they get warm swell up like sausages and are bright red, almost purple, and now I have a new symptom... I am beginning to bruise very easily. I have about 10 bruises on my body, and I have no idea where they came from...
Also, not to mention the terrible fatigue...
I am being tested once again for thyroid disease, Lupus, RA, diabetes, and scleroderma... They are also doing another MRI, EEG, and they will be performing an ultrasound on my thyroid.... I just hope I can get some sort of an answer... I can't see myself living like this for the next 30,40, 50 yrs? It is somewhat bearable now, but I just want to feel normal again... I want to be able to go out and play with my daughter and not have to stop after 10 minutes because I am in pain or too exhausted....
I am sorry this is so ling, but I guess I just needed a place to vent, because I have had so many people close to me tell me that it's all in my head, and asking me how many tests are they going to run before you give up and accept it...?
I will never accept it, and I will keep looking until they give me a diagnosis and then I can be treated.....I am so tired of people telling me it is in my head.
Thanks for listening, and ig you have any advice, please pass it on.
Thanks!
Michelle

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16 Replies:

  • just a few questions...Do you also have memory and concentration issues as well????? Does activity make your symptoms worst????? or do they come on more post excertionally? Do you also have sleeping issues eg needing to sleep excess hrs or waking up tired still when you have slept okay? or insomina? Do you get a sore throat or fever as one of your symptoms which comes on with everything else at times?? (this symptom may of just been at start of illness if you can remember back or present now). Is the dizziness made worst by being upright or upright too long?? i have an idea of what your problem may be.. but need those questions answered first to see if it's likely to be relevent or not.
    taniaaust1 2267 Replies Flag this Response
  • Just curious, I know you've had your thyroid tested, but have you had your adrenal glands tested, particularly an acth stim test as a lot of your symtoms could be explained by a form of adrenal hyperplasia(my guess would be 11 beta hydroxylase deficiency)have you had your electrolytes checked recently as I beleive easy bruising can be related to low potassium levels?hope this helps in some way.
    Anonymous 42789 Replies Flag this Response
  • I am so sorry you are feeling so poorly for so long! And I have been in the seat where the docs tell me it is ALL IN MY HEAD...good grief....I can't imagine that ANYONE would want to "think" up such suffering! I can understand as I have not been myself for about 8 years now....started with Graves Disease....I have a few ideas...you may have already explored these but let's give it a shot and it is possible that you have several things going on: One idea: orthostatic intollerance (my daughter had this) Second idea: with thryoid conditions in the family, do not rule this out yet. The American Association of clinical Endocrinologist recommend a TSH of between 0.30-2.5 and over that or under worthy of treatment. I hope you were tested for FT4, FT3 and the antibodies for Graves Disease and or Hashimotos. I hope you are paying close attention to your lab results just to be sure. Also Elke on this site has an interesting thryoid story and you may want to research the threads on that. And...you may have something cyclical going on with the thyroid as well. Third idea: ovarian hormones do seem to be a problem for you. Have you been to a pituitary specialist by the way? I wonder if you have something going on there as you seem to have lots of things going on with the endocrine system. Fourth idea: diet....what is you diet like? Have you ever been tested for Celiacs disease? Have you ever tried elimination diet? Fifth idea: candidia Also: chronic fatigue I am not suggesting that just ONE of these on this list is the cause of all that is going on. All the things I mention will have a total body impact....yours is a tough case. I wonder if in your case a good doctor who deals with total body issues like a DO or some similar profession doctor, might be a good choice for you? It sounds like you need a doctor who can help you take control and get total body care: diet, exercise, vitamins, acupuncture, sleeping habits, stress reduction and so forth. It seems to be that for this complicated case, total body care may work well..... I understand how frustrated you are....hope I helped a bit. Joan
    Joan5555 316 Replies Flag this Response
  • just a few questions...Do you also have memory and concentration issues as well????? Does activity make your symptoms worst????? or do they come on more post excertionally? Do you also have sleeping issues eg needing to sleep excess hrs or waking up tired still when you have slept okay? or insomina? Do you get a sore throat or fever as one of your symptoms which comes on with everything else at times?? (this symptom may of just been at start of illness if you can remember back or present now). Is the dizziness made worst by being upright or upright too long?? i have an idea of what your problem may be.. but need those questions answered first to see if it's likely to be relevent or not.I definitely have memory and concentration issues... My hubby gets so upset with me because I will completely forget to complete a task, and he ends up doing it...Yes, activity makes me even more tired. I try to go out and take a walk with my daughter and it lasts maybe ten minutes, because I get really fatigued...not just physically, but mentally as well. As far as my sleeping issues... I don't have insomnia, but I never feel well rested...ever...I have never noticed that a sore throat precedes my problems, but I do get a scratchy throat periodically..Dizziness.... yes, If I stand too long a time, I will sway even more than usual. Typically, when I stand up, I just sway my body on purpose from side to side so I don't feel as dizzy.Hope you can provide some insight! As to the Lymes possibility, I have a blood test being run today where they are looking for Lyme, Thyroid (again) Scleroderma, Lupus and RA (again).Thanks!Michelle
    grabski17 6 Replies Flag this Response
  • There is no question you are dealing with an infectious etiology. Obviously the big question is what is it. This is not in your head, and you should not entertain such thoughts :cool: -this only pulls your immune system down! We must pray for wisdom, knowledge and understanding. I have suffered with similar symptomologies and yes it is frustrating but there is hope, we are just looking in the wrong places. I think you are going to have to look outside Western mainstream medical thought to get some answers. Much of the symptomology speaks of CFS or CFIDS or FM. There are a few doctors that specialize in this. Some names come to mind, Dr. Majid Ali, Dr. Leo Galland, Dr. Sherry Rogers. There is quite of bit of research from the NIH and CDC concerning CFS. There can be several pathogens that could cause this havoc -for instance some of the herpes family of viruses come to mind like HHV6 and cytomegleovirus. Mycoplasma infections have also been implicated in disease patterns like this - see Dr. Garth Nicolson, MD. There is a good possibility that the GI tract is harboring some infection (parasites, yeast/fungus, bad bacteria). Testing for parasites can be difficult and there appears to be conflict on proper testing methods. You might want to take a look at badbugs.org for some reference information. Supporting the body with nutritional intervention is key to maintain some balance. Some of your symptoms (migraines, GERD, joint pain) speak of a magnesium issue. I am dizzy every day, I have IBS, terrible heartburn, my hands when they get warm swell up like sausages and are bright red, almost purple, and now I have a new symptom... I am beginning to bruise very easily. I have about 10 bruises on my body, and I have no idea where they came from... I just read about these very symptoms from http://beyondwellbeing.com/ibs/ This site comes from Eastern thought and not Western thought, so some open-mindedness is necessary! But do remember that the Chinese have about 5000 years of doing this, so I wouldn't discount this as being invalid. I just did a consultation with him and he quite affordable, knowledgable and kind. I think he might be able to help you. Or at least give you a piece of the puzzle.
    LINENUP 122 Replies Flag this Response
  • Have they checked your thyroid ANTIBODIES yet? Although it wouldn't explain the lymph nodes in your groin, an unrecognized thyroiditis or even Hashimoto's Encephalopathy could explain many of your symptoms. I was reassured over and over that my thyroid gland was okay, because my thyroid hormones were okay. But eventually, I got my antibodies checked and found out that indeed I had a thyroiditis. Doctors are trained not to check thyroid antibodies unless hormones are off, first. I found out the hard way that only looking at hormone levels will mean some cases of thyroiditis are missed. If you have a family history of thyroiditis (and type 1 diabetes), it might really be worthwhile looking into the antibodies (to thyroglobulin and thyroperoxidase).Best Wishes.
    Anonymous 42789 Replies Flag this Response
  • You are not alone. I have very similar symptoms along with some others (rashes & such) and haven't had a sufficient diagnosis or treatment as of yet. I've been diagnosed with fibromyalgia, which is kinda bull crap, because look at all the other unexplainable symptoms. Autoimmune connective tissue diseases are hard to catch diagnostically - doctors do NOT have all the answers!!! I am lucky though in that my mother has similar symptoms and has a lot of experience with this. She never received a good diagnosis either but has found doctors that work with her symptoms to treat each individual one, which is what people who find the right diagnosis do anyways, because there's often no cure for what you have anyways. You don't always need a diagnosis other than just for the sake of letting other know it's not in your head OR making sure if you begin to face death that they know WHAT it is you need to be treated for (as is the case with scleroderma and lupus). It can be scary, because some people die before they find out what they have (a friend of mine's dad had terminal scleroderma by the time the doctors figured out what it was). I'm glad you're not listening to people, and you're not giving up. Because the fact is that your quality of life and the occupations of your life are disabled by whatever's going on in your body. After seeing what my mother has gone through all these years, I've finally realized that sometimes we don't need a diagnosis to validate what we're going through. I'd just find a supportive doctor that can admit (s)he doesn't have all the answers but that will try what he can to treat your SYMPTOMS as they come. Sounds like it's not getting any worse (like dangerous). As for your spouse, this can be very tricky. My dad verbally abused my mom about her health problems for a long time ("you're a lazy slob, it's all in your head, you enjoy being sick, you sound like a hypocondriac,"), because he was ignorant and frusterated, and no one knew what she was going through (until I got it too). There's a book called "Embracing the Wolf," which is comforting because she writes about the process she went through before her husband came to peace with her disease. Good luck with that! Hope you stay strong and your husband realizes what you're going through!
    BrendaOT 1 Replies Flag this Response
  • I definitely have memory and concentration issues... My hubby gets so upset with me because I will completely forget to complete a task, and he ends up doing it...Yes, activity makes me even more tired. I try to go out and take a walk with my daughter and it lasts maybe ten minutes, because I get really fatigued...not just physically, but mentally as well. As far as my sleeping issues... I don't have insomnia, but I never feel well rested...ever...I have never noticed that a sore throat precedes my problems, but I do get a scratchy throat periodically..Dizziness.... yes, If I stand too long a time, I will sway even more than usual. Typically, when I stand up, I just sway my body on purpose from side to side so I don't feel as dizzy.Hope you can provide some insight! As to the Lymes possibility, I have a blood test being run today where they are looking for Lyme, Thyroid (again) Scleroderma, Lupus and RA (again).Thanks!Michelle Was just making sure you had other diagnostic symptoms too ..before i suggested Chronic fatigue immunity syndrome CFIDS (also called chronic fatigue syndrome). To have it.. memory and concentration problems usually always feature in it too . http://wwcoco.com/cfids/bernesx.html (for a good list of CFIDS symptoms .. easy bruising can be part of CFIDS) CFIDS patients often have POTS (postural orthostatic tachycardia) or neurally mediated hypotension . Orthostatic intollerance which is a subcategory of Dysautonomia is quite normal in this condition (and hence why i asked you if being upright makes you dizzier). With this.. standing still can be real hard (head pressure, dizziness and nausea may come on).. moving about is easier. Get a doctor to send you away for a "tilt table test". This will diagnose the orthostatic issue. from what you've said.. it sounds as if you have chronic fatigue immunity dysfunction syndrome and hence many of the associated issues of it. (i've had my own hands (also feet) swell up due to all this at times). CFS can affect the whole body and many think it is a problem to do with the mitochondria in the body (cell level energy issue in the body). It can affect hormones etc etc and there are various tests which can help point to a CFS diagnoses. seek out a specialist or doctor who also has a CFIDS or CFS speciality . (local CFS support groups may be able to help you find one of those or try ringing your local arthritis or fibromyalgia association.. as sometimes they know of CFS support groups). with CFIDS.. it is important to learn to pace activities (so one dont get illner) .. and one usually just works treating the symptoms. Rest is very very important.
    taniaaust1 2267 Replies Flag this Response
  • You are not alone. I have very similar symptoms along with some others (rashes & such) and haven't had a sufficient diagnosis or treatment as of yet. I've been diagnosed with fibromyalgia, which is kinda bull crap, because look at all the other unexplainable symptoms. Autoimmune connective tissue diseases are hard to catch diagnostically - doctors do NOT have all the answers!!! I am lucky though in that my mother has similar symptoms and has a lot of experience with this. She never received a good diagnosis either but has found doctors that work with her symptoms to treat each individual one, which is what people who find the right diagnosis do anyways, because there's often no cure for what you have anyways. You don't always need a diagnosis other than just for the sake of letting other know it's not in your head OR making sure if you begin to face death that they know WHAT it is you need to be treated for (as is the case with scleroderma and lupus). It can be scary, because some people die before they find out what they have (a friend of mine's dad had terminal scleroderma by the time the doctors figured out what it was). I'm glad you're not listening to people, and you're not giving up. Because the fact is that your quality of life and the occupations of your life are disabled by whatever's going on in your body. After seeing what my mother has gone through all these years, I've finally realized that sometimes we don't need a diagnosis to validate what we're going through. I'd just find a supportive doctor that can admit (s)he doesn't have all the answers but that will try what he can to treat your SYMPTOMS as they come. Sounds like it's not getting any worse (like dangerous). As for your spouse, this can be very tricky. My dad verbally abused my mom about her health problems for a long time ("you're a lazy slob, it's all in your head, you enjoy being sick, you sound like a hypocondriac,"), because he was ignorant and frusterated, and no one knew what she was going through (until I got it too). There's a book called "Embracing the Wolf," which is comforting because she writes about the process she went through before her husband came to peace with her disease. Good luck with that! Hope you stay strong and your husband realizes what you're going through! Brenda.. i hope you saw my last post to this thread and check out the symptom link i posted. CFIDS can run in families..as there seems to be some kind of genetic predisposion/link to this illness. (in my own family.. both me and my young cousin who's in another state to me, who has same symptoms as me.. are on disability for it (she's just out of her teens..and i've had it since i was in my 20s).. my nanna and uncle have an overlapping illness to it (FM and MCS). Sadly.. studies have shown that the average time to get a diagnoses for this illness is 7-9 years!!! (thou it's getting better as doctors become a lot more educated in it.. thou most still dont know much at all and tend to get out bad advice on it as they are not up to date with the latest research). Try to seek out a doctor who specialises in this illness.. as with some with it.. certain other things can be done to help it some. Fibromyalgia is one of the overlapping illnesses to CFS. in fact.. one quarter of those with FM do have CFS!! and a half of those with CFS.. do have FM with it. I strongly suggest checking out the following site which specialises in both FM and CFS www.immunesupport.com
    taniaaust1 2267 Replies Flag this Response
  • I hope that you are still reading this because some of the stuff that you are talking about maybe resolved easier than you think. I have PCOS which is polycystic ovaries syndrome. Which affects my hormones. I am telling you this because:1) I have asthma2) I have Reflux3) I had sore throats and hoarse voice4) I would get so tired (not as tired as you, but real tired)5) I have pains-I had an attack with my stomach and was told it was IBS, but infact, it was my gallbladder (dr. after dr. told me it was in my head. But I pushed and pushed and then they did a HIDA scan and saw that my gallbladder wasn't functioning.6) Currently, I am having severe back pains that and again Dr. after dr. no clue.7) bowel problemsBut the things that I figured out how to better- asthma, reflux and sore throats and bowel problems. I found a nutritionist that works with hormonal issues. So, he put me on this "clean diet" where I only got my carbs from my veggies and I have to eat alot of green veggies and protein. (don't do this on your own--you need to find a nutritionist that deals with this) they use science and your blood chemistry to figure out what foods are right for you. after two months of being on this diet --I lost 15 pounds. I needed to lose weight and I need to lose more. But, I didn't have to take my reflux meds or my asthma meds. Basically, asthma and reflux go hand in hand. The more you cough the more it aggravates the reflux. If your reflux is bad it causes your asthma to be back. Vicious cycle. This diet also gave me more energy. I notice that when I "cheat" for a couple of days...I feel like crap.Also, before I was diagnosed with PCOS (which is a combo of Polycystic ovaries and insulin resistance Diagnosed by taking the three hours glucose test with insulin measured). I stopped eatting large amounts of carbs that my body craved. and my hypoglycemia symptoms went away. If you can't find a nutritionist that works with hormones (don't know where you live, but in NY Vinny Portera at 212-888-8988) pretty much has made my life alot more liveable. I have alot more to go and figure out what's wrong with my back. FYI, I do have arthritis throughout my body (not rheumatoid) I also have psoriasis (skin condition, not liver) my diet has alot to do with it. Our food in the USA alone has so many hormones and chemicals. Those of us that have autoimmune diseases (psoriasis, arthritis etc) I believe are more sensitive to these chemicals and we get multiple issues. If you can't find this type of a nutritionist, try to eat clean. This means-avoid processed foods.If you have a trader joes or Mrs. greens or whole foods, try getting food there. Example, bread at trader joes whole wheat-has five ingredients and none are corn syrup like at the regular supermarket. Try to eat organic as much as possible. (doesn't have to be everything) I eat Eggland eggs, more expensive but I find it to be a better quality and they are only fed by organic. Eat lots of fresh spinach cooked though. Very easy, put a little olive oil in a pan put in lots of spinach and cover. For about five minutes you will see it is soft and ready to eat. One bag doesn't make too much though cause it shrinks. Stay away from tomatoes,potatoes, and white flour.My nutritionist told me to buy this book--even if you are not trying to lose weight it helps you feel better. The Schwarzbein Principle: The Truth About Losing Weight, Being Healthy, and Feeling Younger.Good luck and please keep me updated. It may take over a month to start feeling the results. you need to detox your body.Tara
    Anonymous 42789 Replies Flag this Response
  • Hang on, can I just tell you - there's only one way that I've EVER been able to lose weight quickly and healthily without freakin' starving myself or taking pills...Forget LOW FAT, LOW CAL, LOW CARB - none of this crap works because you're basically starving yourself - then besides making your life miserable, you don't even lose weight!! Your body is too smart and it just re-calibrates your metabolism to match your new caloric intake...The only thing that has worked for me is "Calorie Shifting" - It works amazingly and just makes so much sense. My friends are getting annoyed with me saying I never shut up about it... that I sound like Tom Cruise, lol - but it's literally changing my life!! I eat a ton and still lose weight, so obviously I'm gonna be proud of it and tell people, yaknow?Anyway, you can check out the whole theory at http://www.consumerfilter.org/products/weight_lossbtw, Worst NAME EVER - "fat loss 4 idiots" - it's like: "hey thanks!!" wtf?? ...marketed by guys obviously ;)post here and let me know if you love it - we can track progress together... good luck - you can do it!!!
    Anonymous 42789 Replies Flag this Response
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  • Just curious, I know you've had your thyroid tested, but have you had your adrenal glands tested, particularly an acth stim test as a lot of your symtoms could be explained by a form of adrenal hyperplasia(my guess would be 11 beta hydroxylase deficiency)I am a carrier for 11-beta hydroxylase deficiency and gave it to my daughter. It took at least 9 years to get a diagnosis.But I remember when my daughter was 17 she almost ceased in an instant her female development. Also my son's orthodontics took twice as long because his Ortho told us his skeleton/bones prematurely hardened--characteristic of 11-beta type CAH.My daughter's 11-beta CAH symptoms include PCOS, very irregular menses, hirsutism, endless plucking of male type whiskers, days of heartburn, and more. Another daughter has migraines as well. My son has fatty tumors in several places. But both he and me, his father, may well have milder versions. 11-beta seems to strike females worse.To test for this deficiency demand your doctor blood test for 11-deoxycortisol, cortisol, and deoxycorticosterone levels. Pay for it yourself if you have to and if googling for "11-beta hydroxylase deficiency" tells you you have the major symptoms.11-beta is quite variable in its ability to afflict different people. Doctors don't believe much in 11-beta, but in the last 3 years, more research has come about.
    Anonymous 42789 Replies
    • January 15, 2010
    • 05:26 AM
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  • Poor you, I was told my depression was all that was wrong with me and I begged for help, after surgeon did wrong op and my health was never same again, see http://www.youtube.com/watch?v=zF6PK9TXG0E Doctors often make mistakes, trust your own instincts...I completely believe it is not all in your head, its a cop out for they dont know what is wrong, have you had your B12 checked? if this is low it can make you feel chronically tired. I had to keep going back to the doctors, emailing, phoning etc and all along I was correct, ive lost my colon now and my now surgeon says he cant believe in 4 years they didnt work out the condition i was left with dont give up hope
    crunchiejoe 61 Replies
    • January 19, 2010
    • 06:36 PM
    • 0
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  • When I read your post I got the chills, because for the past two years (I am 19 now) I've had nearly identical sypmtoms to yours: Chronic migraines and headachs, abdominal pain, GERD, constantly and easily fatigued, arthritic achs, bowl problems, asthma, panic attacks, easy brusing, enlarged lymph nodes, vertigo...but then also painfull heart paplatations and tingling in my limbs as time went on. My symptoms came on slowly at first as well, feeling tired with increasing headachs, but I was soon in too much pain to ignore them. I saw doctors, got MRIs, was tested for RA, Lupus, Thyroid Disease (my THS levels were always borderline hyper at around .35), but no answers were found. After being told I was just depressed with fibromialgia time after time, I put off seeking answers for while untill I began having heart palpatations and developed a thyroid nodule. A few weeks ago, even though my thyroid hormone levels had been normal, I was referred to an endocrinologist for a consultation and to biopsy the nodule. She was the first doctor that not only listened to what I had to say, but also took me seriously. After an hour of talking and reviewing my symptoms, she suggested I may have a vitamin deficiency, which can cause debilitating symptoms and syndromes. In addition to the biopsy, she ordered a number of labs to be done, testing for deficiencies, less common conditions, and other blood levels. The nodule came back benign, but as it turns out I have a severe vitamin d deficiency, B-12 deficiency, and iron deficient anemia. I haven't yet started treatment, being as I just literally got the results 1/20/10, but after looking everything up, my symptoms finally make some sense and I have hope. I hope I gave you a new possibility to check out, and if not I want to let you know that I know what it's like to be told to "accept the fact there's nothing really wrong." Stay strong, and best wishes.
    Anonymous 42789 Replies
    • January 21, 2010
    • 09:32 AM
    • 0
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  • It was a bit eerie and refreshing to read your post because I have all the same symptoms as you, and they all came on in the order that happened to you, too, all starting at age 16. Tiredness all the time, IBS, enlarged gland in neck (permanent), bruising, heartburn, palpitations, migraines, dizziness/lightheadedness, menstration issues. I am now 31 and all of my tests have come back clean all these years; I have done all the same tests as you. I don't take medicines either, nor take vitamin or herbals supplements.I was wondering if you have mercury fillings in your teeth? I'm actually going to the dentist to have all mine removed. I was thinking perhaps the mercury was poisoning my system. I'm hoping and praying this is the answer to all the mystery symptoms.Just like you, I'm running out of explanations and now trying to see if its elements I'm exposed to.Only other thoughts...have you done a sleep study? I have not, but I would like to. I do experience night terrors...so maybe not reaching REM sleep causing the constant tiredness?
    Anonymous 42789 Replies
    • January 30, 2010
    • 00:08 AM
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  • :(Hello, It all started 12 years ago, I was a healthy 17 yr old girl, active, happy, etc. I began to just feel tired all of the time, lost my appetite, and just didn't feel like doing anything. Then I noticed a lump on the right side of my neck. Went to my doc, cause I just wasn't feeling right, and then I was in an oncologist's ofc with my mother and they were telling me we needed to perform a biopsy. Lab results came back negative for lymphoma. Then I saw a infectious diseases doc, and they ran every test they could think of, even HIV, and they all came back negative. My symptoms subsided, so we thought nothing of it...At 19, Had two more lumps, one on the left side of my neck and one on the left groin side. Had another biopsy to be sure, and it was also negative. Didn't think anything of it after that. At 20, began to get really bad tendonitis in my shoulders, wrists and elbows, both sides....Just thought it was playing the flute for so many years, and subsequently gave it up....24.... Began getting migraine headaches...started as once a month, then twice, then once a week, until it got to the point where I was getting them one every other day. Began taking Topomax daily...24..Diagnosed with endometriosis. This was after 8 yrs of doctors telling me that my cramping was completely normal, and that 7=9 days for the bleeding was normal. This was when I began to become an advocate for my health and not listen to doctors when they told me nothing was wrong...25...dagnosed with arthritis, both knees and ankles....after the ANA and RF tests came back inconclusive...27....Diagnosed with GERD and Barrett's esophagus..., yes, at 27....My GI doc was shocked... THen I was also diagnosed with Asthma, and also began to have panic attacks. All during those years, I would have severe abdominal cramping that would land me in the emergency room and would go away as quickly as it came. Thy have run every test possible for the abdominal pain, but everything came back inconclusive. 28...began to think that there was NO way I was this unhealthy and everything was unrelated...started to look into seeing my PCP to see if there was anything we could do...Now I am 29, going on thirty in about two months... I have seen two rheumatologists, three GI docs, an allergist/immunologist, neurologist, and my PCP (which I have switched) and everything has come back negative. Thyroid disease and diabetes runs in my family, but I have tested negative for these as well as testing negative for Lupus, RA, immune deficiency disorders, I am not allergic to ANYTHING......Also, I have an enlarged lymph node on the right side of my neck that has been there about 9 yrs, and another one on the left side that has been there about 6 yrs, and one on the right groin side that has been there about 6 yrs. I wake up every single morning stiff and in pain, I have a dull headache every day, I am dizzy every day, I have IBS, terrible heartburn, my hands when they get warm swell up like sausages and are bright red, almost purple, and now I have a new symptom... I am beginning to bruise very easily. I have about 10 bruises on my body, and I have no idea where they came from...Also, not to mention the terrible fatigue...I am being tested once again for thyroid disease, Lupus, RA, diabetes, and scleroderma... They are also doing another MRI, EEG, and they will be performing an ultrasound on my thyroid.... I just hope I can get some sort of an answer... I can't see myself living like this for the next 30,40, 50 yrs? It is somewhat bearable now, but I just want to feel normal again... I want to be able to go out and play with my daughter and not have to stop after 10 minutes because I am in pain or too exhausted....I am sorry this is so ling, but I guess I just needed a place to vent, because I have had so many people close to me tell me that it's all in my head, and asking me how many tests are they going to run before you give up and accept it...?I will never accept it, and I will keep looking until they give me a diagnosis and then I can be treated.....I am so tired of people telling me it is in my head.Thanks for listening, and ig you have any advice, please pass it on.Thanks!Michelle See the thread in wrongdiagnosis about B12 from the author of "Could it be B12?" B12 deficiency goes hand in hand with (causes?) endometriosis. B12 deficiency is one cause of elevated homocysteine, which causes joint and bone problems (tendonitis? arthritis?), homocysteine (I thought due to low B6) can cause anxiety problems. Homocysteine should be 6. for every 3 points over 6 you have a 35% greater chance of vascular event (stroke, heart attack,...). Homocysteine can be caused by dietary deficiency or by genetic problems (for genetic issues, see http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Autism-Methyl%20Cycle.htm). Don't know about the lumps and swellings. Topical DMSO takes down swelling. I have tendonitis and DMSO takes the swelling down in 10 minutes. Ifyou use it make sure you have no lotion on and no clothes until it is absorbed. It will bring clothing fibvers right into your skin if you do -- it is very penetrating. Good luck.
    madanthony 1087 Replies
    • January 30, 2010
    • 09:59 PM
    • 0
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