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.

Liked by PeterE, China, emcris, bigluke

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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@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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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.

Liked by emcris

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Hi
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,

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@roxie43

Hi
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,

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

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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

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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!

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@garrykh

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!

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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.

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@garrykh

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!

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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.

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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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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.

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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.

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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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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.

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@stillsearching

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.

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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.

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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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