Living with Undiagnosed Symptoms Despite Medical Consultations

Posted by abdudawood @abdudawood, Sep 2 10:53am

I've been struggling with a complex and worsening set of symptoms for years, and despite seeing multiple doctors, I still don’t have a clear diagnosis. My symptoms have significantly impacted my daily life, and I'm hoping that by joining the Mayo Clinic forums, I might find some guidance or connect with others who have faced similar challenges. I'm really hoping that someone here can help me piece together what's been going on with my health. Any advice or shared experiences would mean the world to me. Thank you!
I started experiencing numerous symptoms in high school, which have progressively worsened over time. I've consulted several doctors, but as soon as they learn that I have diabetes, they attribute all my symptoms to it without conducting further tests. Despite this, my symptoms have rapidly intensified.
Here are the symptoms I've been dealing with:
- Joint and back pain and stiffness
- Limited joint mobility
- Severe pain in my right hip and left shoulder joints
- Difficulty concentrating
- Dry eyes, floaters, light sensitivity, blurry vision, and light flashes
- Weight gain
- A burning sensation in my brain
- Dry throat and constant thirst
- Burning sensation when urinating
- Depression and stress
- Panic attacks
- Poor memory
- Acne on my face and scalp
- Ringing in my ears and hearing loss
- Dizziness
- Weakness in my hands and feet
- Pounding heart and shortness of breath
- Stroke in February 2024 (required acute heart infarction surgery)
- Fatigue
- Cramps and calf pain
- Hair loss and premature graying, including gray eyelashes
- Numbness in my feet
- Dark skin patches and spots
- Insulin resistance
- Food allergies
- Difficulty breathing
- Very high blood pressure, which spikes after sexual intercourse
- Severe coughing
- Loss of smell for weeks at a time, sometimes replaced by a foul odor
- Runny nose
- Severe mineral deficiencies, including potassium, magnesium, and sodium

One major concern that led me to investigate further was noticing a significant worsening of my symptoms after getting married. I also began experiencing retinal bleeding in both eyes. My ophthalmologist questioned whether I had another underlying condition, as my symptoms did not align with typical diabetic retinopathy.
After years of research, I became convinced that diabetes was not the root cause of my issues. I ordered various supplements from iHerb, and while most didn’t help, I found significant relief with the following:
1. Adrenal Stress
2. Adrenaplex
Taking these supplements before bed made a dramatic difference—I felt better than I had in 20 years. My symptoms almost completely disappeared within a week, and for the first time in decades, I slept well. My voice changed, my mood improved, my vision normalized, and my retinas healed, eliminating the need for the laser treatment my doctor had recommended.
I continued taking these supplements for about six months, but then my symptoms gradually returned. Stopping the supplements provided some relief, but I never felt as good as I did in those first weeks. I also tried cortisone pills, which helped temporarily, but my symptoms would return within a week.

I’m at a loss for what to do next. These symptoms are severely impacting my life. I’m easily upset and angry, have no energy for my family, and struggle to retain information. Despite my best efforts, no doctor will entertain any diagnosis other than diabetes and accuse me of neglecting my condition.

I’ve undergone numerous tests, including thyroid function, all of which have returned normal results, except for those related to adrenal function. After worsening on the iHerb supplements, a family friend recommended cortisone. I tried FLORINEF (Fludrocortisone) but couldn’t tolerate a full dose for more than two days. I began taking half a pill as needed, but eventually stopped after two years because I didn’t want to rely on it.
I also experienced diabetic ketoacidosis (DKA) after a throat infection, which raised my blood glucose to 33 mmol/L, requiring emergency hospitalization. After receiving antibiotics via IV, my eye problems and bleeding resolved, my joints became flexible, and I slept better than I had in years. Unfortunately, the symptoms returned within two weeks.
My younger sister, who is neither diabetic nor hypertensive, developed the same symptoms last year and is suffering greatly. Despite extensive testing, I’ve been unable to find a clear diagnosis—rheumatoid and allergy tests have all come back negative.
I’ve exhausted every avenue with doctors, only to be told that my symptoms are solely due to diabetes. Despite numerous tests and consultations, I still have no clear answers. The symptoms are severely affecting my quality of life, and now even my sister, who isn't diabetic, is suffering from the same issues. I'm reaching out to the online community in the hopes that someone might recognize this pattern of symptoms or have insights into what could be causing them. Any guidance, suggestions, or shared experiences would be greatly appreciated.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

The Rheumatoid test was just a check-up done by the orthopedist and he said I don't need the test. It's not Rheumatoid!

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Is it possible for me to upload all my tests?

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@abdudawood

I check my online tests and discovered that I took the Serum B12 vitamin bound to transcobalamin II test and it was >146.

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I don’t really know what that means. Was it labeled as within normal limits? I might ask the doctor who ordered it for review and details. Mine was under 200 on the test I took and sufficiently low to warrant my diagnosis according to my doctor.

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@celia16

Due to my experience of longterm multiple symptoms and deficiency, I now inform others of my experience with B12 deficiency. It’s sneaky and destructive. Also, test first, before taking any to get accurate result. I hope you can find some answers,

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I totally agree, the same regarding B1! Many are deficient in the B vitamins these days as it is very common, especially B1. Doctors do not test for this. I hear it is difficult to test for it?? Not sure. I started on it, take before bed. Makes a huge difference.

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@cathie2024

I totally agree, the same regarding B1! Many are deficient in the B vitamins these days as it is very common, especially B1. Doctors do not test for this. I hear it is difficult to test for it?? Not sure. I started on it, take before bed. Makes a huge difference.

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I reviewed some lab work with my Rheumatologist last week that had been done previously and she pointed out my B6 was marginal. I had been told it was normal. Hmm…Guess, I’ll check on that again. I’ve been focusing on the B12. I didn’t see any test done for B1. Wonder why doctors don’t test for it.

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You can learn much about B vitamins from Dr. Berg on YouTube. He is awesome! I take his B1 supplement which helps me tremendously!

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I'll taking vitamin B complex but I don't know if it includes B1. I'll have to check!

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My sister noticed that her symptoms improve a lot during her monthly cycle. could sex hormones cause such symptoms?

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An ANA of !:320 is not normal. Not sure what < 320 means.

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@abdudawood

Lyme doesn't exist where I was living which is Dubai. I did some autoimmune tests:
1- Celiac: negative
2- Thyroid Antibody Test: negative
3- Some inflamation tests: negative a little high antibodies the doctor said might be caused by Cholestrol medication!
What tests do think I should talk to my doctor to perfrom?
Appreciate your help.

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It seems to me that some of your symptoms are caused by diabetes. Do you take insulin? Do you get your A1C checked often enough? Maybe you need to see a dietician regarding food choices. Hopefully, some of your symptoms will go away.

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