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Frustrated and still no diagnosis

Cancer | Last Active: Nov 7, 2012 | Replies (43)

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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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Replies to "Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I..."

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.

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.

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.

Thyroid been looked at?

Yes multiple times and everything comes back negative.

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.

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.

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.

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!

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.