Having Difficulty Getting Diagnosis

Posted by austin132 @austin132, Sep 10 12:08pm

Hello everyone, I am a 22 year old male that has been dealing with various different types of chronic pain throughout my body. I have seen my primary care physician 6 times and all times he has said that nothing looks to be wrong with me. He has run all the standard blood tests and all have come back perfectly normal.

The pain started 3 days after receiving vaccination but to this day I am still unsure if it is because of that. Only reason I bring it up in this thread is because I was a perfectly healthy athlete before hand. My heart is palpitating constantly, my head feels foggy and constantly hurts, my body feels fatigued even after getting 7-8 hours of sleep at night, and my upper and lower left parts of my abdomen constantly are in pain. My anxiety is spiking but I can’t take medicine for it due to bad reactions to SSRI’s. I have also had trouble holding in urine for long periods of time. If I drink any liquids, about 15-20 minutes later I have to use the restroom. The pain gets worse and worse each day but nothing has come up as the culprit. I don’t really know where to go from here as I was denied from being seen at the Rochester Mayo Clinic. I just need an answer as to how I can manage the fatigue and pain I am feeling. I slowly feel as if I am slipping away and I won’t know what is wrong with me until it’s to late. Anyone know of a direction I can take to get this sorted out?

Thank you!!

Hello @austin132 Welcome to Mayo Clinic Connect. I’m glad you found us and hope that we can help. Connect is a community of patients, and patients’ families and caregivers. We’re not medical professionals so cannot diagnose or treat. How long have you been dealing with these problems?
Besides your GP, have you seen a urologist? They specialize in bladder and kidney problems. You want to get the sudden urge to urinate problem taken care of in case you have an infection.
I’d suggest you also start keeping a journal . Include symptoms: what triggers them, how long they last, medicines you may have taken, foods you’ve eaten that may be triggers, etc.
While we wait for members to answer, I’m going to ask @rwinney for some help.
Have you had any x-rays or CT scans?

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Since your primary care physician seems to be at a loss for what is causing all your symptoms, I think you should probably ask him to refer you to some other doctor (a specialist) in muscular issues, urology (since you mentioned a problem in this area), and perhaps another sort of specialist. Have you had any other tests besides blood work? Any Cat Scan, MRI's, regular X-rays, etc.? You mention that your symptoms all began 3 days after vaccination. What vaccination are you referring to? The Covid vaccine or something else? It would seem a specialist (or a couple of them) is in order and that your primary care physician should be able to point you in the right direction.

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@becsbuddy

Hello @austin132 Welcome to Mayo Clinic Connect. I’m glad you found us and hope that we can help. Connect is a community of patients, and patients’ families and caregivers. We’re not medical professionals so cannot diagnose or treat. How long have you been dealing with these problems?
Besides your GP, have you seen a urologist? They specialize in bladder and kidney problems. You want to get the sudden urge to urinate problem taken care of in case you have an infection.
I’d suggest you also start keeping a journal . Include symptoms: what triggers them, how long they last, medicines you may have taken, foods you’ve eaten that may be triggers, etc.
While we wait for members to answer, I’m going to ask @rwinney for some help.
Have you had any x-rays or CT scans?

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Thank you for the response. I am going to see a GI specialist this week to see if I can get any sort of help with my abdominal issues. I have not had any MRI's or CT scans as my GP doesn't want me to be exposed to radiation unless need be. The blood work checked my TSH levels, thyroid levels, blood counts, hepatitis check, as well as autoimmune activation and a c-reactive protein to check for inflammation. Other tests I have had include a chest x-ray to look for PE, or lung abnormalities, an ultrasound on my gallbladder to look for gallstones or other issues with it, as well as an upper endoscopy with biopsies of my esophagus, stomach and duodenum to look for any upper digestive problems. I also had a urinalyses to see if my kidneys could concentrate urine properly. Lastly I have had an EKG and Echocardiogram on my heart to see if I had sustained heart damage due to my problems. All tests have come back negative for anything other than slight inflammation of my stomach (pretty sure that's nothing new though). I've spent thousands of dollars on all of these tests to get no answers. I also have an appointment with urology in the beginning of October but that can't come soon enough. I am also scheduled to see a cardiologist but that is not until the first week of November. This whole situation has made me a wreck and is spiking my anxiety due to not having any sort of end in sight. I appreciate you taking the time to look at my post.

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@kittymyheart

Since your primary care physician seems to be at a loss for what is causing all your symptoms, I think you should probably ask him to refer you to some other doctor (a specialist) in muscular issues, urology (since you mentioned a problem in this area), and perhaps another sort of specialist. Have you had any other tests besides blood work? Any Cat Scan, MRI's, regular X-rays, etc.? You mention that your symptoms all began 3 days after vaccination. What vaccination are you referring to? The Covid vaccine or something else? It would seem a specialist (or a couple of them) is in order and that your primary care physician should be able to point you in the right direction.

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That's what I am thinking about regarding my PCP too. He just isn't knowledgeable about this type of problem (not blaming him in any way shape or form). I listed all of my tests in a response to @becsbuddy. As for which vaccination I am talking about, I am talking about the Johnson and Johnson single shot for Covid-19. I am scheduled to see specialists in GI, urology, and cardiology. The problem is I have to wait months on end to see them. I am just now getting into GI next Tuesday but made the appointment 2 months ago in early July. Its agonizing just sitting here with no clear direction or end in sight. Thank you for taking the time to read my post.

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@austin132

That's what I am thinking about regarding my PCP too. He just isn't knowledgeable about this type of problem (not blaming him in any way shape or form). I listed all of my tests in a response to @becsbuddy. As for which vaccination I am talking about, I am talking about the Johnson and Johnson single shot for Covid-19. I am scheduled to see specialists in GI, urology, and cardiology. The problem is I have to wait months on end to see them. I am just now getting into GI next Tuesday but made the appointment 2 months ago in early July. Its agonizing just sitting here with no clear direction or end in sight. Thank you for taking the time to read my post.

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Just to be clear, MRI is Magnetic Resonance Imaging and uses sound waves to form a "picture," as opposed to radiation. I'm sure your PCP knows this so I don't quite understand why he would be afraid to order one (fearing exposing you to radiation as you stated in your initial post). Good you are seeing specialists however and hopefully one or all of them will get to the bottom of things. Best of luck.

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@austin132

Thank you for the response. I am going to see a GI specialist this week to see if I can get any sort of help with my abdominal issues. I have not had any MRI's or CT scans as my GP doesn't want me to be exposed to radiation unless need be. The blood work checked my TSH levels, thyroid levels, blood counts, hepatitis check, as well as autoimmune activation and a c-reactive protein to check for inflammation. Other tests I have had include a chest x-ray to look for PE, or lung abnormalities, an ultrasound on my gallbladder to look for gallstones or other issues with it, as well as an upper endoscopy with biopsies of my esophagus, stomach and duodenum to look for any upper digestive problems. I also had a urinalyses to see if my kidneys could concentrate urine properly. Lastly I have had an EKG and Echocardiogram on my heart to see if I had sustained heart damage due to my problems. All tests have come back negative for anything other than slight inflammation of my stomach (pretty sure that's nothing new though). I've spent thousands of dollars on all of these tests to get no answers. I also have an appointment with urology in the beginning of October but that can't come soon enough. I am also scheduled to see a cardiologist but that is not until the first week of November. This whole situation has made me a wreck and is spiking my anxiety due to not having any sort of end in sight. I appreciate you taking the time to look at my post.

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@austin132 I also add my welcome to you here at Mayo Connect. It has to be very upsetting to have these tests and no answers!

You mentioned you deal with chronic pain issues throughout your body, even before the vaccination. If you care to explain, are you on any medications for those issues, or treatment? I wonder if there is a reaction between medications and the vaccine? What are the possibilities you can be referred to a good internist in addition to the urologist you already have an appt with?

Like @becsbuddy mentioned, keeping a journal of the signs you see will go a long way to helping a dr piece together the big picture. You have been very through in knowing what tests you have been through, and writing out what is going on may also help relieve some of the anxiety you are feeling. How does that sound to you?
Ginger

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@austin132

Thank you for the response. I am going to see a GI specialist this week to see if I can get any sort of help with my abdominal issues. I have not had any MRI's or CT scans as my GP doesn't want me to be exposed to radiation unless need be. The blood work checked my TSH levels, thyroid levels, blood counts, hepatitis check, as well as autoimmune activation and a c-reactive protein to check for inflammation. Other tests I have had include a chest x-ray to look for PE, or lung abnormalities, an ultrasound on my gallbladder to look for gallstones or other issues with it, as well as an upper endoscopy with biopsies of my esophagus, stomach and duodenum to look for any upper digestive problems. I also had a urinalyses to see if my kidneys could concentrate urine properly. Lastly I have had an EKG and Echocardiogram on my heart to see if I had sustained heart damage due to my problems. All tests have come back negative for anything other than slight inflammation of my stomach (pretty sure that's nothing new though). I've spent thousands of dollars on all of these tests to get no answers. I also have an appointment with urology in the beginning of October but that can't come soon enough. I am also scheduled to see a cardiologist but that is not until the first week of November. This whole situation has made me a wreck and is spiking my anxiety due to not having any sort of end in sight. I appreciate you taking the time to look at my post.

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I have a neurological disorder that took over two years to diagnosis. I was everywhere. I even drove to John Hopkins which didn’t amount to anything as the doctor was disinterested. I had every blood possible. I was at a Lyme Disease specialist which was $550 out of pocket. I went to a medical doctor who was extremely hard to get into and took no insurance. It was $750 just for the consultation. They took 14 vials of blood which amounted to nothing. I was taken for a lot of money there. The only good thing was that my primary doctor believe there was something wrong as never gave up. I was finally diagnosed with small fiber neuropathy by some arrogant neurologist who was only ordering the skin biopsy because I had bladder issues. He said “I hope it comes back positive so people don’t think you’re crazy”. I put up with a lot if garbage in my two year quest to find a diagnosis. I suggest you never stop searching for answers. You know your body better than anyone. It may take some time but you will eventually find your answers. One last thing did your GI order a Smart Pill test read up on it, it’s worth a try.

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@dianecostella

I have a neurological disorder that took over two years to diagnosis. I was everywhere. I even drove to John Hopkins which didn’t amount to anything as the doctor was disinterested. I had every blood possible. I was at a Lyme Disease specialist which was $550 out of pocket. I went to a medical doctor who was extremely hard to get into and took no insurance. It was $750 just for the consultation. They took 14 vials of blood which amounted to nothing. I was taken for a lot of money there. The only good thing was that my primary doctor believe there was something wrong as never gave up. I was finally diagnosed with small fiber neuropathy by some arrogant neurologist who was only ordering the skin biopsy because I had bladder issues. He said “I hope it comes back positive so people don’t think you’re crazy”. I put up with a lot if garbage in my two year quest to find a diagnosis. I suggest you never stop searching for answers. You know your body better than anyone. It may take some time but you will eventually find your answers. One last thing did your GI order a Smart Pill test read up on it, it’s worth a try.

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Hi @dianecostella, Thanks for sharing the suggestion on the Smart Pill test. For those that have not heard about it here is some information that explains how it works.

How Smart Pills Identify Gastroparesis – Cleveland Clinic: https://health.clevelandclinic.org/how-does-a-smart-pill-help-diagnose-your-gastroparesis/

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Did you take cupro, levaquin, or avelox sometime around when your symptoms began. These are fluoroquinolone antibiotics and can result in a condition called fluoroquinolone associated disability or fluoroquinolone toxicity. Many people afflicted with this condition and many doctors blow them off.

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This is really awful. I really think I would contack the Moderna or Pfzir hot lines or the cdc gov site. They might have an answer. I just googled.the individual places and there are numbers and web sites to report this too.

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@dianecostella

I have a neurological disorder that took over two years to diagnosis. I was everywhere. I even drove to John Hopkins which didn’t amount to anything as the doctor was disinterested. I had every blood possible. I was at a Lyme Disease specialist which was $550 out of pocket. I went to a medical doctor who was extremely hard to get into and took no insurance. It was $750 just for the consultation. They took 14 vials of blood which amounted to nothing. I was taken for a lot of money there. The only good thing was that my primary doctor believe there was something wrong as never gave up. I was finally diagnosed with small fiber neuropathy by some arrogant neurologist who was only ordering the skin biopsy because I had bladder issues. He said “I hope it comes back positive so people don’t think you’re crazy”. I put up with a lot if garbage in my two year quest to find a diagnosis. I suggest you never stop searching for answers. You know your body better than anyone. It may take some time but you will eventually find your answers. One last thing did your GI order a Smart Pill test read up on it, it’s worth a try.

Jump to this post

My Granddaughter was diagnosed with CRPS after 5 DRs. One Orthopedic group suggesting they break her legs because her Femurs were a little crooked. A Physical Therapist put cast like supports on her ankles starting this mad pain taking her down a rabbit hole that no one has an answer for the intense pain of Complex Regional Pain Syndrome. The parents might end up taking her to Italy for treatment to relieve her pain. No one will give her pain pills. This has been a night mare.

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@austin132

That's what I am thinking about regarding my PCP too. He just isn't knowledgeable about this type of problem (not blaming him in any way shape or form). I listed all of my tests in a response to @becsbuddy. As for which vaccination I am talking about, I am talking about the Johnson and Johnson single shot for Covid-19. I am scheduled to see specialists in GI, urology, and cardiology. The problem is I have to wait months on end to see them. I am just now getting into GI next Tuesday but made the appointment 2 months ago in early July. Its agonizing just sitting here with no clear direction or end in sight. Thank you for taking the time to read my post.

Jump to this post

There has been cases of the Johnson and Johnson causing blood clots. Was the Cardiologist aware if the type of shot you had.

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