I live in the Washington DC area and it can be hard to find a doctor that isn’t over booked. I have been to various neurologists, rheumatologists, cardiologist, and endocrinologists for the past year. My current neurologist is at Georgetown hospital and it can take 6 months to get an appointment in with him. I had an appointment with him that I booked 5 months ago, but it just got cancelled because he’s on medical leave for a while. Now I have to start all over and find a good neurologist. I figured I would give this forum a try until I find a doctor that is accepting new patients.
My symptoms started a little over a year ago. I had PMDD symptoms so the doctor put me on Yaz birthcontrol. The yaz worked great for my PMDD, but then I started getting body aches, having balance problems while standing or walking, and unexplainable excessive weight gain. My doctor told me to get off Yaz to see if my symptoms go away and I’ve been off of it for 11 months. My symptoms have gotten much worse. All of muscles burn and ache. Sometimes my joints ache, even my jaw bone hurts. I get random shooting pains all over. I have tingling sensations, pins and needles, and numbness in my arms and legs. Sometimes my muscles would almost give out. Like I couldn’t even lift a small bag of groceries or my fingers burn too much to type on the keyboard. I’ve had zap sensations in my head. It doesn’t feel like a headache. I get mood swings and feel anxious and irritable for no reason sometimes. I’ve experienced depression. My hands and feet get swollen. It can be hard to walk because my feet get red, swollen, and feels like I’m walking on needles. Sometimes I feel really stiff. I’ve had cognitive problems like short-term memory, short attention span, and brain fog. I’ve experienced speech problems such as delayed speech or using the wrong words. I have increased sensitivity to light and sound. I had my vision checked and by vision is perfect; however, I get blurry or double vision. I experience lots of visual snow and afterimages all over the place that will last a long time. I can’t drive at night due to light sensitivity. I have urinated on myself twice without knowing it and sometimes I have the urgency to urinate. I have irregular periods, thick facial hairs, and hair loss on my head. I’ve experienced heart palpitations and heart pain; however, my heart is normal. I’ve had symptoms of IBS and carbohydrate intolerance. These are the symptoms I’ve experienced in the past year. They happen at random, but at least one of the symptoms is always there. My most recent symptoms include uncontrolled muscle twitching in my fingers and toes, I can barely see sometimes because of so MANY afterimages, and I have had a loud siren in my ears a few times. I went to kiss my husband the other day and I couldn’t kiss him. It was like the signals weren’t going out of my brain to my lips.
My family doctor ran so many tests on me that she told me she doesn’t know what other tests she could do. I am negative for diabetes, lyme disease, and she tested me for other tick-borne illnesses like rocky mountain. My salivary cortisol is normal and so are my blood cell counts. My vitamin D is always slightly low even though I take a supplement. I went to various neurologists and nothing has showed up yet. I got a brain mri done 11 months ago and it was normal (I probably need another one). I got a whole spine mri done and that was normal. I had some nerve testing and brain wave studies done that were normal. The doctors have seen that if I close my eyes I sway backwards. I blood tested negative for gluten allergies (which run in family) and celiac disease. My endocrinologist finally found some abnormalities. My testosterone was high and I was producing high prolactin even though I’m not pregnant. She thought I have POS, but I don’t have cysts on my ovary ultrasound. My thyroid is also normal on ultrasound. She thought maybe something is going on with my pituitary gland so she was going to order an mri, but she wanted to redo the blood tests again. Then, my hormone levels came back normal! I did have 2 menstruations in that one month and I did get the blood test done during my cycle. I don’t know if this would affect my testosterone and prolactin levels. She wants a follow up in a few months but I want to get this figured out asap. Also, I’ve looked over the blood work and my ALT (SGPT) is high at 36 and my BUN/Creatinine Ratio is slightly high at 21. I also have high cholesterol even though I eat mainly fruits and veggies. I’m not really sure where to go from now. I’ve missed lots of work going to these appts and have medical bills that may not get covered by insurance. I’m not sure what doctor I should go to next or if I should go to the ER when my symptoms get worse. Sometimes I get severe periods of symptoms, almost like an outbreak.
I’m 24 years-old and I feel like my health is of a 90 year old. I use to ride my bike 25 miles a day and enjoy being active. Now it’s hard for me to enjoy a short walk with my dogs. I have a bachelor’s of science in public health and I currently work as a nanny until I can get my health figured out. I drink a lot of water and my diet consists of organic fruits and vegetables. I don’t eat much meat and I’m not a fan of processed or fried foods. I enjoy an occasional glass of red wine or beer. I don’t take any medications except vitamins. Also, my mom has fibromyalgia and my mom’s sister has MS. I am open to any suggestions and thank you for reading my long story. Please feel free to ask me questions. I'm sure I have left out a few of my symptoms because I have so many.
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