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Frustrated and still no diagnosis

Posted by @lal7792 in Cancer, Mar 13, 2012

Hello everyone, I am new here and been having issues for two years now with extreme fatigue, loss of appetite and weight loss. I have had extensive testing performed by every specialist you can imagine and still have no diagnosis of what is wrong with me. It has been suggested by a few specialists that I should go to the Mayo Clinic or Johns Hopkins. I'm afraid that I'll be wasting my time and money and they will just test me for all of the same things again. Anyone know of anyone else who has these symptoms and have no diagnosis? Everyone says that my symptoms are so vague it could be a million things but that's not helping with how I'm feeling.

Tags: Infectious Disease, womens health, Cancer

PeterE, bigluke, China and 1 others like this

Posted by @css, Mar 13, 2012

Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I had never heard of it and wanted to make sure I had the correct diagnosis. I didn't feel well for about 10 years. Even had a dr. tell me it was all in my head. You need to go to Mayo and keep trying to find out what is wrong. Please don't give up. You just need the right dr. to figure out what is wrong. Mayo was great. My drs. were very knowledgeable,listened to me, and were willing to work with my doctors back home. I was there 3 days. The appts. were scheduled quickly and there was no wasted time. I was impressed with the efficiency. Good luck .


Posted by @lal7792, Mar 14, 2012

Thank you for the encouragement. After two years of feeling horrible and going through doctor after doctor I feel like I want to give up. None of my drs. have told me it's all in my head but you can tell by the way some of them look at you that that is what they are thinking. I was even put on an anti-depressant and am going to a counselor because I really started thinking it was just me making myself feel this way but was confirmed by a counselor that there is something physically wrong with me. I still have not made my final decision yet if I am going to go to the Mayo clinic or not. I don't even know what kind of specialist to tell them I need.

emcris likes this

Posted by @arriba, Mar 20, 2012

You are me. I have had the same symptoms, extensive labs done, many trips to the doctor, finally ended up at a psych for extreme anxiety/depression. finally was tested for Epstein Barr Virus. There is a site for that if you are interested: chronic Epstein Barr Foundation forum. It is the virus that causes mono which I never had. 95% of us have it in our bodies but stress can allow activate it. even though there is no real cure, it was almost a relief to me to find the cause of my problems--now the fatigue is my worst symptom along with extremity weakness. I really thought I was a total hypochondriac and had the feeling my doctor was humoring me for awhile. Good luck. I hope you find an answer--it will certainly rule your life until you do.


Posted by @lal7792, Mar 21, 2012

Thanks Arriba. I was actually tested a few weeks ago for Epstein Barr and it came back negative. I have been tested for just about everything and it has all come back negative. It is definitely not depression as I am seeing a counselor and she feels there is something physically wrong with me. I've been told by several doctors that It's not normal to lose an extensive amount of weight like I have in a short period of time. Going to a neurologist in 2 weeks and then deciding if I want to go to Mayo or not.


Posted by @jude59, Mar 23, 2012

Thyroid been looked at?


Posted by @lal7792, Mar 23, 2012

Yes multiple times and everything comes back negative.


Posted by @jude59, Mar 27, 2012

They need to give you values. Not just "normal". Everyone has their own normal, basically. One doctor told me that at 5 I was normal and I should go see a counselor. For me, I have to be a 1 to be able to handle life, to get out of bed in the morning. Hope this helps. Health Partners totally gets this!


Posted by @willow15, Mar 26, 2012

Hi, good luck hope they find your cause, I also have fatique, I can get up at 7and by 9 can hardly navigate, I also have back issues and lie on my bed quite often to relieve it, so it helps with both issues, I do not have the loss of weight though wish I did, I have hypo thyroid so it works the opposite.


Posted by @ymmacym, Apr 7, 2012

Also Parathyroid and hypolthalumus


Posted by @arriba, Mar 25, 2012

Good luck! I hope you find the cause--it will give you peace of mind. At least you know what you are fighting. I think I would go to Mayo unless your neuro finds something definitive. I hope you let us know what happens.


Posted by @arriba, Mar 25, 2012

I forgot to ask if you have been tested for Lyme disease by a Lyme literate lab? Many people post on the epstein barr forums about this and all insist that the lab used is very important. another thing they mention is "babesia", I hope I am spelling that correctly(maybe barbesia)which is also caused by a tick bite I think.


Posted by @bigbird, Nov 7, 2012

i was tested at least twenty times for lyme disease including several times at mayo clinic, after researching the test they use for lyme disease I found out that eighty percent of the time it comes back negative whether you have it or not. The western blot is the only test that along with your symptoms will tell you if you have lyme or not, also see a lyme specific Dr. If it comes back positive because you need to get checked for about ten Co infections that you can also get from a tick bite. Many of them cause all of your blood tests to run low like vit. D, thyroid, testostirone in men and entrygine in women. If you cannot find a doc to get you the western blot test the right way let me know and I might be able to steer you in the right direction.


Posted by @anneinside, Apr 1, 2012

As to Mayo: You won't need to tell them what specialist you need. You will start by seeing a generalist who will look at all the labs/procedure results you already have and then set up additional tests and appts with specialists. I'm not sure but they might want you to send all your prior results in advance.


Posted by @roxie43, Mar 15, 2012

I know someone who has fibroids and has your symptoms but she's also in physical pain.
Also, have you thought of perimenopause or depression?
Just a thought and I hope you get answers. How's your sleep? Sleep apnea?
Take care,


Posted by @roxie43, Mar 15, 2012

Stress can also cause an array of physical symptoms. Immune disorders and migraine medications..
but I'm not a doctor...just some thoughts


Posted by @mermaid157, Mar 15, 2012

It may be carbon monoxide toxicity .. I would have a professional come to your home to check the furnace. I suffered 2-3 years then found heat exchanger in my Carrier furnace was leaking chronic 250 ppm No one bothered to inform me that it was recalled due to this happening to others. The only carbon monoxide detectors that are accurate cost approx. $70 and have a red digital LED. I felt like you did and was OD on Lithium because the Dr thought I was in depression. Good Luck I hope you can benefit from this Many carbon monoxide poisonings are misdiagnosed Chronic Fatigue Syndrome..that's what my only sister had and she died unexpectedly at 50. Also we lost our pet fox and cat


Posted by @garrykh, Mar 16, 2012

Sounds a lot like me. For years I had fatigue, body pain, and several other similar symptoms. I was treated for everything from gout to psoriatic arthritis. my blood work was perfect. then during a CT scan for digestive issues a sharp eyed radiologist noticed some slightly swollen lymph nodes. My GP did all the usual things but my blood work was fine. He dismissed it. Fatigue and pain continued. I occasionally went in for help but to no avail. Antidepressants were prescribed. The Dr. Recommended counseling.Then 3 years later a different MD prescribed a CT. It was read by the same radiologist who referred back to first CT and sternly suggested I be checked for lymphoma and leukemia. I then went to an oncologist who did blood work which of course was perfect. to shorten the drama I requested a biopsy and bone marrow analysis. diagnosis - stage 4 follicular lymphoma. Bottom line is find a Dr. Who will listen and don't let anyone tell you it's in your head. good luck!


Posted by @lal7792, Mar 16, 2012

Thanks Garry. So did you also have loss of appetite and weight loss with that? I did have a CT scan and was told it showed nothing. I believe I was also tested for leukemia but would have to double check on that. Everyone has told me my lymph nodes are fine.


Posted by @garrykh, Mar 16, 2012

Yes I lost 24 pounds. I had a hectic lifestyle in international marketing (constant travel) so its understandable the Dr thought I was exagerating. My main point is that you will need to manage this yourself using the Dr. as advisors. The unusual cases are the ones which often fall between the cracks. Good luck.


Posted by @stillsearching, Mar 21, 2012

Have you tried any food allergy testing? Celiac could be a possibility. Never give up. It took me 5 years to finally discover that i had a pancreatic cyst. Which then Turned into a very complicated tumor. I had doctor after doctor tell me I was making things up, I was depressed, I was hormonal, I was drinking to much (I drank maybe one beer a month) but they don't believe you if you tell them you don't drink (I still get the rolling eyes when I say I don't drink at all, my husband has had to tell them that I really don't drink). You have to remember this is a business! Treat it like one. You would never let someone walk over you in business, don't let the business of medicine walk over you. It's your LIFE and there are no do-overs. You have to be your own advocate. While some doctors are great and will go above and beyond, you can only imagine what they see and have to deal with on a daily basis. No one goes to see them saying they are great and feel like a million bucks. I wish you a positive resolution to your situation.


Posted by @lal7792, Mar 21, 2012

Yes, been tested a few times for Celiac and it came back negative. Wow, sorry to hear your story. If I decide to go to Mayo, I think I'll chain myself to a chair and tell them I'm not leaving until they have figured out what is wrong with me. Two years is long enough for me. I can't believe you had to go 5 years. I don't think I'll be able to take it that much longer.


Posted by @jeffinmn, Mar 25, 2012

I had similar symptoms and it turned out to be Graves's Disease. Look it up...


Posted by @seriousheadache, Mar 27, 2012

Both the Mayo Clinic and John Hopkins are great choices, they do a great deal of research that is why they usually know what something is before anyone else, and I'm sorry I think later down the page you mention a neuro, Both Mayo and John Hopkins should have a neuro availble as well, check websites


Posted by @emcris, Mar 29, 2012

I know the feeling.... I don't have the same symptoms but I have beenin and out of hospitals for a year and I still have not found what's wrong.... I keep passing out and having low blood sugars


Posted by @emcris, Mar 29, 2012

It really stinks when no one can figure out what's wrong with you


Posted by @klsxoxo, Apr 14, 2012

sounds like what my mom experiences when her dumping syndrome happens


Posted by @kacportaolcom, Apr 18, 2012

If you are passing out and have low blood sugars then make sure you intake enough carbs through the course of the Day and even throughout the evening!!! Do what ever it takes to not let your body get to the point of "passing" out !! it is quite unfortunate that sometimes there is no answer as to the cause... so one must treat the symptoms... Good luck


Posted by @marylynette, Mar 30, 2012

I have been to all the speciallists, had all the tests and still have no answers as to why my gut does not work properly. I had to have an ileostomy in 1983 becaue of pan colitis and it was supposed to be the cure. Instead I have since had to be on IV therapy numerous times, have been dehydrated to the point of acute renal failure, have a leaky ileostomy that the docs just say to live with because they don't know why it is seems that even the specialists don't understand much about the GI track...especially if yours doesn't fit neatly into their ideas of what should be wrong. Imagine the surprise they had with me when my blood count was normal but I had MRSA, ecoli, staph and one other infection....the docs have a hard time with those of us who don't fit neatly into the parameters of the medical guidelines for various illnesses. I will keep you in my prayers, hoping that you can somehow find comfort and relief from all your health problems.


Posted by @my, Apr 14, 2012

hi. i am really sorry to here this. i am experiencing simalair problems. for the past 3 years i have headaches . dizziness , pins and needles and muscle pain especially in my hips. i have been to numerous doctors but to no avail. i recently saw a doctor who diagnosed me with RA. i was on medication but saw no results. i visited another doctor and he said i have vitamin d deficiency. i just started the medication and i am waiting to see the results. hope we both get better soon 🙂


Posted by @mysterypatient, Apr 17, 2012

Hi! I can relate to you as I am experiencing the same things as yourself. I was reading through the reply's and wanted to share my story. Long story short: I have been dealing with health issues for the past 5/6 yrs. I have had severe stomach pain & a significant amount of weight lost in a short amount of time. Doctors have ran every kind of test imaginable including blood work on me. 2 yrs ago a women's health doc. diagnosed me with Celiac's Disease. I was tested for that same thing by a different doc. about a yr. or so before that and wasn't picked up. I have been following the gluten free diet since even though I cheat every now & then 🙂 Not only is it a HUGE adjustment but also is hard & expensive. I find myself having a hard time believing that's what I have because I am able to eat wheat most times and I am fine- my stomach does not seem to be in pain. It goes in spurts though. I have been experiencing back pain since Feb. that has returned again. My pain was so bad that I couldn't get out of bed and went to the doctor when they said my white blood cell count was HIGH & I had a kidney infection & put me on antibiotics. Then the doc. office called me back 3 days later telling me based on my culture results that I didn't have a kidney infection and I didn't need to take the antibiotics.I went back the doc. who then did 2 ultrasounds looking at my kidneys & galbladder, ect. then did a hipascan where they study/look at your galbladder. All of those tests came back fine.
I then went to my Women's Health doc. a few weeks later where they ran the same tests and said my white blood cell count was LOW! They told me they were going to retest me a few weeks later and haven't been done yet. Since my pain has returned I'm going to go back to the doctor and insist something be done.
I know how frustrated you must be- I feel the same way and am tired of being tired and sick everyday of my life!! Easier said than done but hang in there & keep me posted!


Posted by @china, Apr 18, 2012

How about Lyme disease


Posted by @uptopart, Apr 18, 2012

I'm flustrated, vexed, disappointed, outrage about my entire situation! Texas had the audacity to tried to kill, or demise my health totally; to get rid of vital evidence, DNA! However, TX didn't have the courage, will power to admit they were wrong, and be held accountable for their actions!


Posted by @uptopart, Apr 18, 2012

My health crisis is so bad, out of hand! Texas is refusing to offer me the following: social, emotional, legal, and medical attention! I have reach out to the USA, with my concerns, situation; but the USA including the President has refused, wont reach out, help, support me at all! Thats for sure!


Posted by @uptopart, Apr 18, 2012

Since June 09, I had tried to get answers, properly diagnose, treated, told the truth, closure, justice, and recompense for; the unnecessary harm, mental anguish, emotional trauma, neglect, endangerment, and collateral, punitive damages! I'm still waiting for justice in my situation! For real!


Posted by @willowsunrise, Apr 19, 2012

Hi, severe anxiety and drepression can cause a lot of problems. Trust me I know! Since my little girl has been gone, I have had a "mild cardiac episode" more or less a mild heart attack that was completelystress induced. I also had the vertibrae in my neck and back dislocate because of the stress. Mental definitly has a direct connect with physical. However, when it gets to the point of unexplainable torment and misunderstanding; I would sit down and pray. My experiences with things are more extensive than what I protray. I do understand.


Posted by @uptopart, Apr 19, 2012

In my case it's not like I'm not aware, or have some type of knowledge about what went down/happen! It just that the State of TX, Gov. Perry, The Criminals(Albertson's, Dallas Housing Authority, and Doctors/Medical Professionals), Don't Wants To Admit, Accept That a Crime Was Committed!


Posted by @uptopart, Apr 19, 2012

However, God Sits High and Looks Low, and Yet Sits On The Throne! He is All Knowing, Powerful, Wise, Lives Forevermore, Omniscient, Omnipotent, OmniPresent! What You Do, Did, or Done To The Least of The Brethrens/Littleones; God Said You've Did, Done the same got damn thing to Him!


Posted by @roxie43, Apr 20, 2012

How are things my dear? Hang in there you're strong. Here if you need to chat.
Have a blessed night,


Posted by @fedupwithfibro, Apr 24, 2012

Do you also have joint and muscle pain along with headaches too?


Posted by @sasseelady, May 28, 2012

Believe me I told my Dr to stamp me Hypochondriac, dig a6 ft hole & bury me or send me to an Endocrinologist. The latter has been the answer!


Posted by @melaniewa, Jun 1, 2012

I suffered from nausea, appetite loss and vomiting which is now under good control. In the early days it was awful, and to begin with no one could figure out what was going on. Mayo Clinic were unable to help me, and all of my tests kept coming back normal.

I found a great physician in NC who has been able to get to the bottom of my issues (which turned out to be motility related. I have SIBO, overgrowth of bacteria in the small intestine which causes nausea, weight loss, diarrhea etc.). My doctor is an IBS specialist, Dr. Drossman ( - he is excellent. I highly recommend him and he will work with you over time to get to the bottom of things.

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