Posted , 45 users are following.
I am new to this group and am getting very frustrated about some weird ongoing health things that no doctor really seems to be concerned about. About a year ago (March 2013) I started to become fatigued and achy and just had no energy. I was always very active and enjoyed working out and would everyday for at least an hour - sometimes twice a day. & I never used to need much sleep - 5-6 hours was usually enough. I attributed that to the fact that it was about midpoint of second semester of my first year of college and I was just worn out. I was also constantly thirsty and nothing seemed to help so I went to the doctor and they checked for diabetes and that was ruled out, but they found that I had high cholesterol (283). I eat a fairly healthy diet so that was odd. Well, it didn't get better over the summer. I was still constantly tired, easily worn out, and achy. I also started getting headaches often which was weird because I very rarely got them - except for when I was young I can recall a couple of instances where I had terrible headaches. I have thick hair and have always shed, but it also started to get much thinner. In September, everything got much worse along with new symptoms. I would sleep 10-12 hours a night and nap anywhere from 2-6 hours during the day. I had headaches that would make me sick and extremely dizzy. I had trouble concentrating and finding words and was getting pretty forgetful of things i would have been easily able to remember before. I mix up my words so often now and have trouble getting the words out and enunciating them. I would get terrible pain/cramps in my legs to the point where I couldn't walk. Numbness and tingling sensations would shoot down my legs and arms lasting anywhere from a couple seconds to an hour. I would be standing or get up and my legs would feel so week that i would fall down. I get out of breath just walking and have chest pain. back pain and neck pain are constant - some days are worse than others. I ended up fainting one day and had an MRI and some white brain matter changes were found and a neurologist said that they were just because of migraines. I was also prescribed medicine for the migraines and nothing seemed to help - they just made me feel weird. I was sent to a rheumatologist who said I had none of her diseases but that something is definitely not right. I have been tested for mono, lymes, celiac disease.. at one point my doctor thought parathyroid tumor because PTH was 160 something (back to upper normal now) but he doesn't think so anymore now. the doctor i am seeing only gave me one physical exam - like listening to my heart, checking my lymph nodes, eyes, ears, throat, etc - when i first saw him in september. when i went to a follow up appointment a couple weeks ago, i was very adament that my neck, chest, armpit area, and groin regions were extra sore and that they had been for about two months but it seemed to be getting worse recently. so, he felt them and found that my cervical, axillary, supraclavicular, and inguinal regions were enlarged. with my body being achy all the time, i'm thinking that it is likely they have been swollen for a while and that i just hadn't noticed it until it got worse. i always felt like i had "knots" in those regions but it seemed normal to me because it's felt like that for so long. he didn't say much about it other than that he would check me for mono again (which came back negative) and i now have an appointment with an infectious disease specialist this week... i've done my fair share of looking online and the things that seem to make the most sense would be rheumatoid arthritis or lupus (but the rheumatologist ruled those out) or lymphoma or some type of cancer. my CK levels have been elevated since september - at least 200 points higher each time i've been checked. my LDH level has continuously gone up and is now at the upper limit..... still fatigued, achy, headaches aren't as often or as bad anymore, still get random bad pains in my arms and legs.. still the same concentrating and speech things as i mentioned earlier.. back pain and neck pain.. i feel like i'm going crazy because the doctors just keep dismissing everything as no big deal. does anyone have any insight or a similar experience to any of this?
sorry this is such a long post but i figured the more information i could offer the more insight someone may have.
1 like, 41 replies