Frustrated and still no diagnosis

Posted by LAL7792 @lal7792, 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.

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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

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@emcris

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

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

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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 leaking……it 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.

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@css

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 .

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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.

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@css

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 .

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Also Parathyroid and hypolthalumus

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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 🙂

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@emcris

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

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sounds like what my mom experiences when her dumping syndrome happens

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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!

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@emcris

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

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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

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