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Undiagnosed: Migraines, Endocrine, and More.

So, I have been dealing with quite a few health issues that only seem to be getting worse. After 6+ years of going through doctors, specialists, and second opinions, I'm still undiagnosed. I have compiled symptoms, history, and specialist's opinions into one cohesive document, so I figured I'd maybe get some opinions from those that are here. I know it's a bit of a long post, but if you have the time, and the expertise, I'd really appreciate some external opinions here.

I am a 22 year old female. Most recent severe symptoms involved a bout of severe confusion, inability to find the right words, and extreme vertigo. This was followed a week or so later by a fainting spell and severe vertigo. Nothing was found, and both 'attacks' were labeled as 'uncommonly presenting migraines'.

I was officially diagnosed with migraines in January, after being taken by ambulance to the ER with abnormal blood pressure readings and a severe migraine, (worst ever). I had a status migrainosus a few months later, which lasted eight days and was only resolved after a slew of abortive medications, migraine cocktails at the hospital, and finally being resolved with a heaping dose of Valium at the ER.

~ Mononucleosis at the age of 9-10 yrs old, first major illness. Bedbound due to severely enlarged spleen.
~ Continued splenomegaly through the years, spleen grows, shrinks a little, but still stays enlarged around 15-19 cm, with a deeper curve than normal, which makes it a bit bigger, as the measurement is taken tip to tip, not around the longest part of the spleen.
~ Anemia, unknown cause, diagnosed at 17.
~ General upper respiratory infections, sinusitis, and frequent infections. Led to discovery of severe dust allergy, and has since cleared up a lot with preventative measures. Diagnosed at 19/20.
~ Thyroid goiter found, no nodules. Age 21.
~ Other current afflictions are ovarian cysts, a pilonidal cyst/abcess (recurrent), and Vitamin D deficiency.
~ Have had T&A and appendix removed.
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• Migraines, even when taking migraine preventive medicine. Around 2-4 migraine days a week, with at least 1-2 days being severe enough that It is very hard or impossible to get work done. Have had two status migrainosus in the past few months.

• Extreme fatigue and weakness that comes and goes. Sometimes bad enough that it is hard to lift and use a pen or phone, or sit up in a chair for too long. Does not seem to directly correlate with migraines and is not a ‘tiredness’, but an actual physical fatigue and weakness that does not resolve with sleep or rest.

• Joint aches and pain. This does not happen all the time, but when it does, it is very painful and hard to focus on anything else. It is usually very sharp, and is more common in my knees, wrists, and neck.

• Extreme vertigo. Sometimes the room spins; sometimes it feels as if objects are moving faster/slower or further/closer than they are supposed to be. Sometimes objects appear bigger/smaller than they are supposed to be, as well.

• Lightheaded and dizzy. Comes and goes, usually comes when the vertigo gets really bad, or if I have been moving around.

• Very little appetite. GI has already ruled out GI causes.

• Extreme nausea that comes and goes, but is always there. GI also ruled out any GI causes, and anti-nausea medicine only helps dull the nausea enough to make it bearable.

• Leg pain, similar to a sharp burning feeling. It is hard to walk very far, or sometimes even keep my legs in one spot without them starting to feel like they are burning or have sharp pains. The pain is usually from the knee down, but sometimes moves up to mid-thigh.

• Heels and feet are tingling. This has only recently started within the last few weeks. My heels, and sometimes my feet and ankles, will start to tingle very sharp and painful. It does not matter what position I am in, and it seems to come on randomly.

• Feeling extremely hot or cold when the temperature changes just a degree or two, sometimes to the point of sweating or shivering. Others in the room or general area do not report any temp. change.

• Flushed face and sudden cold sweat. Happens randomly, with or without sweat, can be after normal movement and activity, or sometimes sedentary work. Not sure if there are any specific triggers.

• Night sweats.

• Extremely painful, heavy menstrual cycles. Sometimes incapacitating.

• Inability to lose weight. Steady weight gain, even with increased activity and dietary monitoring.

• Leg swelling. Primarily left leg, but both legs swell up. Not a constant issue, but does flare up once every few months, or so. Swelling comes with pain, edema may or may not pit, and there is sometimes difficulty walking when these flares happen. Diuretics cannot be taken, as BP average is around 100-110/60-70, sometimes dropping as low as 85/50.

ENT helped rule out chronic sinusitis in the past, and assisted Hematologist/Oncologist with a potential lymph node biopsy by ruling it medically unnecessary.

Allergist/Immunologist tested for allergies as well as immunity issues, and diagnosed a severe dust allergy. Since starting treatment for this allergy, and learning to dust-proof the house, ENT symptoms have reduced drastically. I was often very ill with sinusitis, upper respiratory infections, and other general ENT issues that masked underlying issues. This is now managed fairly well.

Gastroenterologist ruled out any GI causes of nausea and lack of appetite. Ordered CT of abdomen, remarked on splenomegaly, nothing else abnormal. Recommended following up with Hematologist to get possible MRI of spleen, because he did not like how the spleen is still enlarged. Hematologist was not concerned with spleen size. No further testing of spleen was completed. GI did Upper GI Endoscopy, discovered minor hiatal hernia. As I do not eat more than a few bites at a time, he ruled this out as a cause for the nausea and lack of appetite, stating that it would not be causing constant issues, but would be associated with meals. GI also did a Gastric Emptying Study, which came back with normal results.

Hematologist/Oncologist tested and treated for anemia, though no specific cause was found. Splenomegaly referral from GI was of no concern to him. H/O tested for cancer markers to investigate leukemia, lymphoma, or something similar, due to symptoms. This also involved a bone marrow biopsy, which showed low iron stores. No concern of cancer was found, and was ruled out as a cause for issues at hand.

Rheumatologist did a basic workup for potential autoimmune disorder. ANA came back negative. Rheumatologist ordered a set of thyroid blood tests, which came back abnormal, at which point he referred to an endocrinologist for possible thyroid issue.  

Endocrinologist did thyroid and some endocrine workup. Tests came back abnormal, and a goiter was found during a thyroid ultrasound, with no present nodules. Endocrinologist was about to start treatment for hypothyroidism when conflicting blood test came in showing hyperthyroidism levels. After another test came back with normal levels, he then refused to do any further testing, or any more follow up.

Neurologist ordered CT and MRI of head and a spinal tap. Diagnosis of migraines was officially confirmed, and treatment started. After being referred back to Neurologist with new symptoms, including an episode of severe confusion and vertigo, Neurologist is referring back to primary care and is ordering standard autoimmune tests, and states the new neurological symptoms do not line up with migraines.

Cardiologist was seen, and no concern was shown over any abnormalities in heart rhythm, blood pressure, or other cardiac issues.

Psychologist was seen in regards to ADHD worsening. ADHD was reconfirmed, as was an auditory processing disorder and a possible visual processing disorder. No depression, anxiety, or mood disorders were diagnosed.
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Avatar universal
Recent abnormal blood tests:
MCH.................:25.4 pg L, runs low.
RDW................:15.8%, H, runs high.
Potassium........:3.7 mmol/L, N, dips lower frequently.
Chloride….......:108 mmol/L, H, runs high.
Calcium.............:8.4 mg/dL, L, dips lower frequently.
Alk Phos...........:144 IU/L, H, runs high.
Serum Iron…....:32 mcg/dL, L.
Iron Saturation..:9%, L.
eCrCl..................:212 mL/min, H, runs high.
Vitamin D 25…..:9.73 ng/mL, L, runs low.
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Avatar universal
Welcome to the awful world of undiagnosed disease. I wish you well.
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I'm considering going through the NIH Undiagnosed DIsease program. Or at least trying. I've heard it can be hard to get into.
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