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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@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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Thyroid been looked at?

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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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Yes multiple times and everything comes back negative.

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

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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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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.

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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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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.

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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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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.
gl

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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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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!

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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

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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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