1. < Cancer

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.

Interested in more discussions like this? Go to the Cancer Support Group.

LAL7792 | @lal7792 | Mar 21, 2012
In reply to @css "Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I..." + (show)
@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 .

Jump to this post

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.

REPLY
LAL7792 | @lal7792 | Mar 21, 2012
In reply to @stillsearching "Have you tried any food allergy testing? Celiac could be a possibility. Never give up. It..." + (show)
@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.

Jump to this post

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.

REPLY
Jude59 | @jude59 | Mar 23, 2012
In reply to @css "Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I..." + (show)
@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 .

Jump to this post

Thyroid been looked at?

REPLY
LAL7792 | @lal7792 | Mar 23, 2012
In reply to @css "Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I..." + (show)
@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 .

Jump to this post

Yes multiple times and everything comes back negative.

REPLY
jeffinmn | @jeffinmn | Mar 25, 2012

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

REPLY
arriba | @arriba | Mar 25, 2012
In reply to @css "Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I..." + (show)
@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 .

Jump to this post

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.

REPLY
arriba | @arriba | Mar 25, 2012
In reply to @css "Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I..." + (show)
@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 .

Jump to this post

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.

REPLY
Willow15 | @willow15 | Mar 26, 2012
In reply to @css "Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I..." + (show)
@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 .

Jump to this post

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

REPLY
Jude59 | @jude59 | Mar 27, 2012
In reply to @css "Hi, I went to Mayo after I was diagnosed with Churg-Strauss Syndrome, it's an autoimmune disease.I..." + (show)
@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 .

Jump to this post

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!

REPLY
serious headache | @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

REPLY
View MoreView Less
Please sign in or register to post a reply.