Lost: Being sick and not knowing why wears on you

Posted by toomanyoars @toomanyoars, Feb 16 6:31am

Needing to vent. I am feeling like a human dartboard. I’ve been fighting something for years and my physicians have been little help. It’s like a specific set of symptoms present, they throw a dart and suggest a random diagnosis. I recognize they can’t know everything and there have been limitations to my ability to find answers…location, finances, insurance. So don’t get me wrong this isn’t a “I hate doctors” vent. To the contrary I have the utmost respect for really great doctors. I am just frustrated. This morning maybe, after another week of waiting I will hear back from my doctor on my blood work. He suspects a tumor. Obviously I don’t want a tumor. However I am not freaking out because I have ‘been there done that’ with false diagnoses so many times…lupus, chronic fatigue, cancer, fibromyalgia, MS hypothyroid, parkinson’s… You can only handle so much and I don’t know which is worse, to hear they don’t know what’s wrong or to throw a diagnosis at you, without any real testing and you think your life just came to a halt. Being sick and not knowing why for a really long time wears on you not just physically but mentally. It’s exhausting and day’s like today I just want to quit trying to find answers and just deal with the sick and deal with the pain.

@toomanyoars I’m glad you felt safe ‘venting’ here on MayoClinicConnect. We all need to do this sometimes. Just know that we’re here to listen. You mentioned that there are limitations on finding answers. Are you anywhere near medical centers but your insurance doesn’t cover? Would you mind sharing what makes your doctor think you might have a tumor?

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@toomanyoars You have been through the wringer. It's good you are taking a balanced approach regarding the recent investigation for your mysterious illness(es). Below I have linked three previous discussions with members that have been through similar situations regarding diagnosis identification. You may want scroll through the posts in search for information and member connection.

– In recovery. Too many symptoms. Autoimmune disorder? HELP! https://connect.mayoclinic.org/discussion/autoimmune-disorder-help/
– For anyone who still can't find a diagnosis https://connect.mayoclinic.org/discussion/for-anyone-who-still-cant-find-a-diagnosis/
– Undiagnosed and frustrated: RA? Lupus? https://connect.mayoclinic.org/discussion/hi-im-new-to-the-forum-and-want-to-share-my-journey/

May I ask when you will receive results for the possible tumor diagnosis?

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@toomanyoars I can really relate to your feelings. I too had a problem that went undiagnosed for a lengthy amount of time. It was not as long as yours apparently, it was about 15 months, but in that time I saw many different doctors — PCP (internist), hematologist, endocrinologist, but none of them figured out until I went to a neurologist. He suggested it was from my liver, and he was right.

What I learned from that was if I ever go a long time without getting a diagnosis again I will head to a major medical center, preferably a teaching hospital. Since then I have gone to Mass General in Boston for just about everything except my PCP. I live in southern NH so it is a bit of a distance but not too bad overall. Although my diagnosis was serious, resulting in a liver transplant, it was a relief to finally know what the problem was.

Have you been to a major medical center? If not is possible for you to do so?
JK

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@becsbuddy

@toomanyoars I’m glad you felt safe ‘venting’ here on MayoClinicConnect. We all need to do this sometimes. Just know that we’re here to listen. You mentioned that there are limitations on finding answers. Are you anywhere near medical centers but your insurance doesn’t cover? Would you mind sharing what makes your doctor think you might have a tumor?

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Hi. The closest decent medical center to me is a couple hours away. Insurance now a nightmare for me. I used to teach. Good insurance, loved my job more than anything but physically but was getting more difficult with the fatigue and pain primarily. Eventually I had to quit working. We live in a state where the medicaid/Obamacare has massive loopholes. We don't qualify for medicaid yet don't make enough for the marketplace so for me to have any kind of insurance I have to purchase 6 month policies, usually aweful insurance that covers very little and pray they will let me renew after the first 6 months. Last year they didn't. One of those use it and loose it situations. I honestly hoped that I could take a year off, get healthier and go back. That was three years ago.
As far as the tumor my physician is basing it as of right now until more blood work comes in on symptoms. Random BP spikes, flushing, sweating, headaches, abdominal pain and others.

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@erikas

@toomanyoars You have been through the wringer. It's good you are taking a balanced approach regarding the recent investigation for your mysterious illness(es). Below I have linked three previous discussions with members that have been through similar situations regarding diagnosis identification. You may want scroll through the posts in search for information and member connection.

– In recovery. Too many symptoms. Autoimmune disorder? HELP! https://connect.mayoclinic.org/discussion/autoimmune-disorder-help/
– For anyone who still can't find a diagnosis https://connect.mayoclinic.org/discussion/for-anyone-who-still-cant-find-a-diagnosis/
– Undiagnosed and frustrated: RA? Lupus? https://connect.mayoclinic.org/discussion/hi-im-new-to-the-forum-and-want-to-share-my-journey/

May I ask when you will receive results for the possible tumor diagnosis?

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Thank you for all of the info. I am supposed to get some of the blood work back tomorrow. Hopefully will get good news.

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@toomanyoars

Hi. The closest decent medical center to me is a couple hours away. Insurance now a nightmare for me. I used to teach. Good insurance, loved my job more than anything but physically but was getting more difficult with the fatigue and pain primarily. Eventually I had to quit working. We live in a state where the medicaid/Obamacare has massive loopholes. We don't qualify for medicaid yet don't make enough for the marketplace so for me to have any kind of insurance I have to purchase 6 month policies, usually aweful insurance that covers very little and pray they will let me renew after the first 6 months. Last year they didn't. One of those use it and loose it situations. I honestly hoped that I could take a year off, get healthier and go back. That was three years ago.
As far as the tumor my physician is basing it as of right now until more blood work comes in on symptoms. Random BP spikes, flushing, sweating, headaches, abdominal pain and others.

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@toomanyoars I’m sorry to hear that being able to get better medical care does not seem possible. I sincerely hope that the care you are able to get will diagnose your problem.

I’ve heard that sometimes the big medical centers/teaching hospitals will take patients with no charge. Despite the distance have you tried speaking to them?
JK

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Update: The blood tests were inconclusive for an adrenal tumor for the most part. Two of the tests he ordered weren't run and one came back with a negative result so he continuing down this course isn't productive. After a long discussion he agreed to send me to a new rheumatologist and endocrinologist. Right now I am fighting my insurance to cover because neither are in my area. They are both at a better hospital a couple hours away. Obviously I am a little frustrated, not that I want a tumor, that would make me insane but I want answers and the availability to get answers. He and I talked about going to Mayo and it not being cost affective right now. It's hard when you are in that rock and hard place when you are ill… no diagnosis but too sick to work and unable to get temporary disability to help pay for the medical treatment to get a diagnosis…living in a state where even though your income is minimal you can't get temporary assistance (Medicaid) to go to the physician and any decent insurance plans are too expensive so you pay less and pray it covers anything at all and accrue more and more medical debt. I had a pretty good life and a great career before all of this. I miss it but I am still getting up every day putting one foot in front of the other. It's just harder some days.

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@toomanyoars

Update: The blood tests were inconclusive for an adrenal tumor for the most part. Two of the tests he ordered weren't run and one came back with a negative result so he continuing down this course isn't productive. After a long discussion he agreed to send me to a new rheumatologist and endocrinologist. Right now I am fighting my insurance to cover because neither are in my area. They are both at a better hospital a couple hours away. Obviously I am a little frustrated, not that I want a tumor, that would make me insane but I want answers and the availability to get answers. He and I talked about going to Mayo and it not being cost affective right now. It's hard when you are in that rock and hard place when you are ill… no diagnosis but too sick to work and unable to get temporary disability to help pay for the medical treatment to get a diagnosis…living in a state where even though your income is minimal you can't get temporary assistance (Medicaid) to go to the physician and any decent insurance plans are too expensive so you pay less and pray it covers anything at all and accrue more and more medical debt. I had a pretty good life and a great career before all of this. I miss it but I am still getting up every day putting one foot in front of the other. It's just harder some days.

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@toomanyoars I am so sorry to hear of your continued frustration. It makes everything so much more stressful, doesn’t it. You mentioned you’re fighting with your insurance company because of needing to see a physician at a distance. Do you think the doctor, who recommended the new physicians, would be willing to write to the insurance company or call saying this is the best and only option for you right now? Might be worth asking him/her. Will you try?

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That's a really good idea. I will check with him and see if he is willing. Thank you

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Sick & in pain for a year. Many tests. No answers

I am a 66 year old woman who has always been healthy until last March, 2020. I got a virus (covid negative). It took a while, but after a couple of months, I was back to 80-90% of normal. Suddenly, my b/p spiked 220/110, I was dizzy, my neck hurt, my blood sugar spiked. My thyroid went from hypo to hyper and back to hypo. It normalized with medication. My neck continued to hurt. I felt like I had a lump in my throat and my head had ocean sounds. I was on a high dose of 2 different b/p meds which leveled out the b/p, but I still had high spikes. I had several tests to find the underlying cause of the high b/p, but nothing was found. About 2 months ago, I started getting weakness in my legs. I felt like they were rubber. And then I couldn't stand up from a sitting position with pushing myself up. My hands started to tremble. Tests include: MRI of brain, lung x-ray, CT scan of thyroid and throat, neurologist did blood work testing for muscle disease, EGD. So much has happened in the past year, I'm not sure I've covered it all. Have I mentioned brain fog? And uncontrollable yawning 2-3 times a day? I've had 4 covid tests and antibody test. All negative. What is wrong with me!?

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@fortshaw

Sick & in pain for a year. Many tests. No answers

I am a 66 year old woman who has always been healthy until last March, 2020. I got a virus (covid negative). It took a while, but after a couple of months, I was back to 80-90% of normal. Suddenly, my b/p spiked 220/110, I was dizzy, my neck hurt, my blood sugar spiked. My thyroid went from hypo to hyper and back to hypo. It normalized with medication. My neck continued to hurt. I felt like I had a lump in my throat and my head had ocean sounds. I was on a high dose of 2 different b/p meds which leveled out the b/p, but I still had high spikes. I had several tests to find the underlying cause of the high b/p, but nothing was found. About 2 months ago, I started getting weakness in my legs. I felt like they were rubber. And then I couldn't stand up from a sitting position with pushing myself up. My hands started to tremble. Tests include: MRI of brain, lung x-ray, CT scan of thyroid and throat, neurologist did blood work testing for muscle disease, EGD. So much has happened in the past year, I'm not sure I've covered it all. Have I mentioned brain fog? And uncontrollable yawning 2-3 times a day? I've had 4 covid tests and antibody test. All negative. What is wrong with me!?

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@fortshaw Welcome to connect.We are a caring group who try to help if we can.It sounds like you have gone through all the testing.I can only suggest environmental maybe.Any change in soaps,any new chemicals around you that you could breath in? Any new situation you have had ? I'm sorry you are going through this and perplexed by it Please let us know if you find anything out Blessings to you

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@fortshaw

Sick & in pain for a year. Many tests. No answers

I am a 66 year old woman who has always been healthy until last March, 2020. I got a virus (covid negative). It took a while, but after a couple of months, I was back to 80-90% of normal. Suddenly, my b/p spiked 220/110, I was dizzy, my neck hurt, my blood sugar spiked. My thyroid went from hypo to hyper and back to hypo. It normalized with medication. My neck continued to hurt. I felt like I had a lump in my throat and my head had ocean sounds. I was on a high dose of 2 different b/p meds which leveled out the b/p, but I still had high spikes. I had several tests to find the underlying cause of the high b/p, but nothing was found. About 2 months ago, I started getting weakness in my legs. I felt like they were rubber. And then I couldn't stand up from a sitting position with pushing myself up. My hands started to tremble. Tests include: MRI of brain, lung x-ray, CT scan of thyroid and throat, neurologist did blood work testing for muscle disease, EGD. So much has happened in the past year, I'm not sure I've covered it all. Have I mentioned brain fog? And uncontrollable yawning 2-3 times a day? I've had 4 covid tests and antibody test. All negative. What is wrong with me!?

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@fortshaw Nice to meet you. Welcome to Connect.

I'm sorry to hear that you have fallen ill and there are still not answers despite all of the tests.

I have moved your question to another existing discussion. I did this so you could connect with people in similar situations and in the hopes of you finding a path forward.

Members like @toomanyoars @rashida @cherriann @marye2 @joey808 @smccarty1 @toothgirl @oldkarl @2011panc have discussed a similar topic.

Below are related discussions that you may also wish to scroll through.
– In recovery. Too many symptoms. Autoimmune disorder? HELP! https://connect.mayoclinic.org/discussion/autoimmune-disorder-help/
– For anyone who still can't find a diagnosis https://connect.mayoclinic.org/discussion/for-anyone-who-still-cant-find-a-diagnosis/
– Undiagnosed and frustrated: RA? Lupus? https://connect.mayoclinic.org/discussion/hi-im-new-to-the-forum-and-want-to-share-my-journey/

May I ask what your next steps are yet?

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