[58F] Experiencing a Range of Complex Symptoms

This sounds like a very confusing and frustrating journey. My name is William and I am a medical student at Harvard and member of the MDandMe team. I understand it might be difficult to address all of your experiences here. If you have time, I'd love to chat with you over a call. Could you email me at william@auxhealth.io?

I believe that it all started going bad when I had the infusion of Reclast. It triggered something. A reaction that they haven't studied yet or something. None of the doctors will even agree to consider looking into that. It must be MS or Lupus, or Lymes, or any number of other things it could be but isn't.

Lab tests suggesting end-stage liver disease and rheumatoid arthritis should not typically reverse after 6 months. I'm a little concerned by these results and the fact that your care team isn't able to address your concerns. Where did you go for care? Are you close to a tertiary medical center where you might be able to get a more definitive diagnosis from a rheumatologist, neurologist, and hepatologist for the various issues?

Long story short. I broke my shoulder-went to ER. In the chest xray a growth/mass was seen on my liver. Seeing a Dr. Was suggested. Covid-19 and the shut down happened. No doctor was seeing patients. 1 year later I remember the growth. Called my medical insurance and found a PCP, took 2 months to get new patient visit. Dr. Amber Hayes MD with Northern Nevada Medical Group affiliated with Northern Nevada Medical Center our local hospital. She sends me out for blood tests, Brain MRI, Ultrasound of liver, DEXA scan, mammography, sleep study etc. First thing that came back was blood work. Liver function tests were high. Hypercalcemia was detected, Neutropenia was detected, white blood cell count was low, red blood cell count was low, anemia was indicated. Deficiency in Vitamins D2, B-12, and folate, Rheumatoid factor was high, PTH was elevated, platelet count was high, urinalysis shown high count of Calcium Oxalate Crystals, hemo glowing was High, Hematocrit was High, MCH was high, absolute neutrophils very low. Keep on mind I was 54 yrs old, 5'5" tall 130lbs. Moderately active, had no complaints of pain or any kind of illness. I felt fine. Next my mammography, Brain MRI, and Dexa scan came back. Breast tissue had benign calcification present. Vascular Calcifications due to Peripheral Vascular Diease. MRI found White Matter lesions deep within my left frontal lobe. These lesions had not yet tore through the blood brain barrier. These lesions are a common age related thing developing in patients 80 yrs and up. DEXA came back -3.00 consistent with severe Osteoporosis. Sleep study results showed severe sleep apnea, Liver Ultra sound shows 3.7cm benign cyst, enlarged Liver with necrosis consistent with fatty alcoholic liver diease. Dr. Amber Hayes MD tells me I'll need a Liver transplant or be dead in less than a year. Referral to Liver Dr. Dr. Amber also tells me I have severe Osteoporosis and prescribes an infusion of the drug called Reclast. A last resort medication I was told later by another Dr. I was not told anything about the peripheral Vascular Disease or the Vascular calcification found in my breast tissue. DR.just said my test looked good. She was not concerned about the cyst on my liver or any of the abnormal results in my blood and urine tests. I have the blood and urine labs done every year and never had I seen an abnormal result for anything. I eat health, exercise 3 times a week at a gym. I never get colds or flush. My blood pressure is always around 90/60. Oxygen Saturation 98-100 resting heart rate around 80-85. Temperature runs at 97.8-98.4. My only real problem I had was my teeth. My teeth came in as a child but had no enamel. Resulting in very fast decay and gum loss. I told this doctor that I was having a difficult time believing I had some serious illnesses when I didn't feel sick. All she wanted was for me to schedule the reclast infusion and schedule a f/u appointment with her in 6 months. I'd be about dead then I told her from the liver disease. She rolled her eyes. I had more issues with Dr. Hayes about the reclast infusion but I was no longer her patient, I was told to find a new Doctor. This Doctor worked out of our local low income- NO income Medical clinic in the community. Due to my medical insurance I was very limited on doctors contracted with that insurance. This Dr. Was obsessed with her belief I had Rheumatoid Arthritis. I was referred to a specialist who denied the referral on the basis that there was no information provided that justified the need to see a Rheumatologist I started believing that all doctors were suspect. I complained to this doctor and she told me she would fix it or find another Rheumatologist. She said she would call me back by Friday. That was months ago. Still no call. I changed my medical insurance to another carrier and found a new PCP. By now I am very sick. The constant burning throbbing bone pain over my entire body has left me disabled. So many symptoms. Every system in my body has something going on medically. The new doctor was awesome. He looked over every test, every chart note all the other doctors had done. He listened to all of my symptoms. First thing he did was repeat every test the other doctors had done. My liver did have a cyst on it. That was the only thing that was the same on these new tests. My liver was in perfect health. I did not have Rheumatoid Arthritis. My MRI did have some calcifications scattered about but the White Matter Lesions were not confirmed. The Mammo and DEXA tests are scheduled for March 28th. I have been referred to a neurologist who found nothing that explains my loss of feeling in hand and feet and right side of my face. He says it must be some nerve disease. Why I forget how to walk or try to reach for an object only to have my arm move the opposite way from that object. No idea he says. I've been referred to an endocrinologist. That visit is April 22nd. I just had a follow up visit with the doctor I said was so awesome. When I got to my appointment I was told my doctor did not work there anymore and I was seen by a Nurse Practitioner named Maria who told me it was all in my head. She says no further tests can be done. If the endocrinologist can't find anything then we would just treat each symptom as it came. No more looking for the cause. These doctors have made me sick over the years. They screwed up something. I tried to find the awesome doctor but records say he's now working for some big corporation and only treats their employees. I felt he was trying to find the base problem causing everything and poof, he disappears. Is this the twilight zone? This story was brief. So much left out that I've been through. I hurt so bad and I'm so tired.

It sounds like you've been through a lot and it sounds really frustrating. It's unfortunate that the doctors told you it's "in your head". The work-up being negative may indicate a functional neurological disorder, which just means there is no physical finding to explain your symptoms. In other words, the pain is very real but modern science doesn't have an explanation for why it's happening.

I hear your frustration and I understand how challenging and distressing this situation must be for you. Your concerns are very valid and you need to find a doctor who will actually listen to you.

It sounds like the onset and progression of your symptoms has been quite sudden and severe since receiving the Reclast infusion. The fact that you suffered a serious burn without feeling pain is very concerning and indicates potential neurological issues that warrant immediate investigation. Given the complexity of your medical history and current presentation, I would strongly recommend the following next steps:

1. Seek urgent care for your burn injury if you have not already done so. Burns can become infected without proper treatment.

2. Request a referral to a neurologist if you don't already have one. The numbness, loss of sensation, memory issues and rage episodes point to a potential neurological cause that should be comprehensively evaluated. An MRI of the brain and spine, nerve conduction studies, and neuropsychological testing may provide helpful information.

3. Ask for a referral to a rheumatologist experienced in complex cases. They can do a thorough workup for potential autoimmune/inflammatory conditions that may be contributing to your pain and other symptoms. Specific antibody tests beyond the standard ANA and rheumatoid factor may be informative.

4. Consider seeing an endocrinologist to investigate potential hormonal imbalances, including hyperparathyroidism which can cause the types of bone pain and cognitive symptoms you describe.

As much as possible, it's critical that your care team also communicates between each other, such complicated cases can often have multiple systems interplaying. Don't hesitate to get a second (or third) opinion if you feel your concerns are not being adequately addressed.

I DO NOT HAVE FIBROMYALGIA!!! The pain is in my bones. Not in muscle or other tissues. AND THE NUMBNESS IN MY HANDS AND FEET IS NOT IN MY HEAD! 2 days ago I accidentally poured 425 degree hot oil over my hand and did not notice it. I now have severe 2nd degree burn on my hand that should hurt like hell but I feel nothing. In my hands, feet, and the entire right side of my face. No stroke signs. Just lost all feeling suddenly. It's not in my head. Will someone please hear me? Please?