I've been tracking what I consider to be a progressive disease, but can't seem to get any physicians to concur. In my opinion, it starts 15 years ago, when I was 15 and noticed a tiny hard lump in the soft tissue of my left cheek, along the lower jawline, across from molar #19. At the time the GP told me it was a "**m lymph node" and that I shouldn't worry about it, so I didn't. It wasn't painful until I would get an upper respiratory infection, when it would get larger and painful, but then it would return to a tiny size afterward. It has always been hard though, and is always palpable to my tongue.
At one point in my mid twenties I had a bout of strep and mono at the same time. Shortly afterward I went through a major emotional trauma with a SO. Around this time I started feeling tingling in my left cheek, which eventually seemed to spread down my neck. A couple of other nodes became hard -- one just under the original one, and another on the back of my neck. The next symptom might have been left-side tonsillar crypts which routinely need to be cleaned out. About five years ago, I started experiencing what I can only call a revolving door of symptoms, all of which are on my left side and the trend is to increase in intensity. First it was a tingling in my left ankle. Then it was my left ankle and foot. Recently my left foot feels cold more often than not. I developed a lump on the top of my head, on the left side, which is maybe 1 cm across and tingles quite a bit. The ENT I saw recently said it was an epidermoid cyst. I've experienced chest pain on the left side and tingling on the left side of my back, around the same spot. For at least a week I woke up with my left arm completely numb, and not the sort of "pins and needles" sensation that we're all familiar with when we sleep funny. I have minor eyelid twitching on the left side only, and other minor spasms down the left side. Additionally, I've endured a few years of intestinal spasms -- particularly on the left side. A very localized part of my intestine keeps moving, several times a minute, for hours or even days. And to top that off, and this is gross, but I have rectal bleeding that occurs nearly every bm, with pretty substantial amounts of blood.
Complicating all of this is a history of anxiety. However, I feel that I've gotten that firmly under control, and the symptoms which at one time seemed correlated with my state of mind now are acting of their own accord. I feel like my right side is completely healthy and my left side is deteriorating. My ENT says that the original lymph node, which he can palpitate, is .5 cm, and it needs to be 1 cm in order to be worrisome and recommends I do nothing. The other two nodes are smaller. He said it could also be a salivary gland. The gastroenterologist did a colonoscopy and it was fine. He diagnosed hemorrhoids and hypertrophied papillae and gave me some ointment, but it isn't doing the job. My GP noted "paresthesia" and referred me to a neurologist for an EMG. I haven't gone because I have a very high insurance deductible, plus after all of these blood tests, an echo, a colonoscopy, I'm frustrated. I think the problem is with the lymph nodes and I just wish somebody would do a biopsy. But who am I to think I know anything about medicine?
I'm pretty sure I have a disease, I just would like to know what I should do to take control of this situation and get some answers. I feel really self-conscious about this -- that doctors chalk things up to anxiety when it's no longer the case. Additionally, every doctor I've seen is unwilling to allow that my symptoms could be connected in any way. The response is "it's highly unlikely that your symptoms are connected." Should I go ahead and get the EMG, or will that just produce another "negative" and be a waste of energy? Should I get a second opinion from a different ENT? Is it appropriate for me to demand a biopsy? I take no medication and have no medical history aside from what I've described above. Thanks.
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