Wow, I didn't know that 80% of lesions in the pineal region are malignant. At least, according to this article, that's the number: http://www[DOT]pinealomas[DOT]com/

Only 10% of pineal region lesions are benign, and another 10% are "relatively benign". Not very comforting to know.

Also not comforting:

"Magnetic resonance imaging (MRI) with enhancement provides exquisite anatomic detail, outlining the lesion, the cerebro­spinal fluid (CSF) pathways, and the venous anatomy around the vein of Galen. Also, MRI can aid in the detection of tumor seeding to other parts of the nervous system. However, as with CT, the MRI characteristics of pineal region tumors are usually nonspecific."

The article goes on to discuss how a spinal tap is needed to identify the absence or presence of malignant cells. I'm wondering if I should have pushed for a spinal tap like my original GP from the summer of 2008 suggested. I don't really want to mess around with spinal taps if I don't have to, though. I'm thinking that my next step is to force my neurologist to have another MRI done to see if the pineal cyst is maintaining it's size, growing, or shrinking. If it's maintaining size or appears to be getting bigger and my symptoms are still present at that time (they've been around for 2 years now, sooooo they probably will be), maybe I'll request a spinal tap. Definitely if the cyst is growing. Who knows, it might not even be a cyst!

Onto my thyroid, which has been the ever-mysterious bane of my existence for the past several years. I read this interesting tidbit in an article:

"TSI, which stands for thyroid stimulating immunoglobulin, is the antibody responsible for hyperthyroidism in Graves’ disease. TSI are also known as stimulating TSH receptor antibodies or stimulating thyrotropin receptor antibodies because of their ability to stimulate the TSH receptor on thyroid cells. Acting in place of TSH, these antibodies stimulate thyroid cells to produce excess thyroid hormone. TSI also contribute to the related eye disease, Graves’ ophthalmopathy. TSI is used to diagnose Graves’ disease, to monitor response to anti-thyroid drugs and to helping predicting remission. While the normal range is <130% activity, individuals who are normal do not produce TSI and have levels <2% activity. Individuals with levels between 2 and 125 %, which indicates thyroid autoimmunity, do not generally develop symptoms of hyperthyroidism until levels rise. Therefore, levels much lower than 125% are necessary to predict complete remission. Levels, which are close to 100% activity generally rise when patients stop taking anti-thyroid drugs. Ideally, levels would fall to at least 20% before anti-thyroid drugs are safely withdrawn. The reference range is <130% activity or an index of <1.3 for tests that measure the increased activity caused by adding patient serum to a test solution of thyroid cells." (http://graves[DOT]medshelf[DOT]org/Lab_Tests)

My TSI levels have been measured as 103% and 95%. The 95% was measured after I started taking Levothyroxine. This is something I will mull over for awhile. It really doesn't make much sense, since both this and my radioactive iodine uptake scan both indicate hyperthyroidism, yet my TSH and symptoms indicate hypothyroidism. What the heck? Maybe the pineal neoplasm is some sort of tumor that is secreting excess TSH...or maybe it's really messing up my hypothalamus and causing it to release more TSH than is necessary. But in that case, my T3 would either be normal or high, not on the lower end!

Then there's this statement:

"When you are sick, your body decreases production of T3 from T4. Most people who are sick enough to be in the hospital will have a low T3 or free T3 level."

I guess this is just more proof that I am sick. If only I could get doctors to measure my T3 and TSI more routinely, among other things. I'm really anxious to know what my WBC and RBC counts are, but I have no way of knowing this for a long time. =(

Seriously...what is WRONG with me???

I'm long overdue for a journal update, so I'll try to play catch up while keeping this short (which I usually fail to do).

I haven't written (typed) anything since May 19th, 2009...which was awhile ago. Let me get you up to speed. First, things first.....

I have a friend who is a dentist, and I asked him to palpate my jaw/chin lymph nodes to see if he could find any that were swollen and more importantly, if he could pick out the same lymph node that my regular dentist claimed was swollen upon my last dental check-up. Guess what? My friend was able to pick out the EXACT lymph node that my dentist did without me giving him any prior information. This almost conclusively tells me that I have a solitary swollen lymph node in my lower left jaw. All this after my stupid GP insisted that I didn't have any swollen lymph nodes anywhere and wouldn't even palpate the ones in my jaw/chin.

Remember how I was being driven crazy by the feeling of a lump in my throat each time I swallowed, day in and day out since March 2008? Remember how my GP told me that it was from anxiety and that I needed to see a psychiatrist because there was nothing wrong with me and I was imagining all of it? Or maybe I didn't blog about that because it happened later...in any event, my retarded GP insisted that it was more likely that I was crazy than it was that I actually had some disease or combination of conditions causing my bloodwork to tee-totter and make me feel like s.h.i.t in addition to the actual visible symptoms, including swollen nasal passages and arthritis. Well, I had had enough of her...instead of taking her c.r.a.p and resigning myself to a lifetime of sickness, I insisted that she give me the name of an ENT to see, just so I could have the throat issue checked out since I had been having it non-stop for over a year and a half. She begrudgingly gave me a consult form (which I didn't need anyway because I used to have great insurance) and the name of a doctor to see, but I could tell she still didn't believe me. In fact, she went so far as to say, "They're not going to find anything except for acid reflux...because that's what they find in everyone." Not only did she insult their specialty and diagnostic skills as specialists, but she flat-out stated that it was a waste of my time because I didn't have anything wrong with my throat.

Chalk up another one for me, because I went to the ENT and the minute he stuck a scope down my throat not only did he find evidence of fairly severe acid reflux disease (which I had kinda been feeling had started within the past two years), but he discovered, much to his dismay, that my right vocal cord was partially paralyzed. It was completely out-of-sync with the left vocal cord, and wasn't helping my vocal cords shut all the way. I asked him if this could give me a feeling of something strange in my throat whenever I swallow, and he said YES. Even though he couldn't tell me what caused this unilateral vocal cord paresis, I have never felt more vindicated and sane in my entire life as I did that day. It was proof that I wasn't crazy...that a lot of the feelings--especially something as big as the "lump in my throat"--I had been having for 18 months were actual physiological problems and not just me making mountains out of molehills. I really wanted to call up my GP right then and there and tell her not only was she stupid, a waste of a doctor, and condescending, but she was wrong...and then I might've recommended that she see a psychiatrist for being so negative toward patients and her field of medicine. But I haven't spoken to her since my last appointment which was in May or June. As I left her office, actually, she admitted that she didn't know what else she could do for me, and that she could refer me to another doctor or she could schedule yet another appointment to talk with me, but I told her that wouldn't be necessary and I wouldn't be seeing her anymore. She's useless to me; anything she decided to test I had already thought of testing a year ago.

So my ENT, who is great and just like Dr. House (from the TV series House, M.D.), referred me to a good neurologist specializing in neuromuscular disease. He performed a laryngeal EMG on me right away and was able to determine that the extent of damage to my right vocal cord was such that it was functioning at only 60% of normal...meaning it was only recruiting about 60% of the neurons in the superior laryngeal nerve to aid in muscle movement.

Do I think this is coincidental? Absolutely not...especially not with the TIA episodes I've had over the past year. In fact, I had another one in late October or early November...but i couldn't go to the hospital because I didn't have health insurance. I just prayed that it would end soon and leave no permanent damage. I recorded everything that I felt and noticed during the actual episode even though my brain felt confused and somewhat powerless to actually perform menial tasks like smiling or thinking clearly. It was scary, but I survived and I'm definitely going to bring it up to my neurologist once I've restored my health insurance and am able to see him again (hopefully sometime in January). He can't keep ignoring this pineal cyst.

I read a great article about pineal cysts, and it summarized their effect(s) on a human body in three ways:
1.) Hydrocephalus (vomitting, dizziness, increased intracranial pressure, etc.)
2.) Compression of local or nearby structures (double vision, headaches, etc.)
3.) Endocrine dysfunction (issues with adrenal glands, the thyroid, and hormones produced by the thalamus and pituitary, etc.)

I think it's fairly obvious what's happening here. I'm suffering from (2) and (3); definitely (3). There's a reason my TSH hasn't been incredibly high or incredibly low...just abnormal and fluctuating. There's a reason I look like I have PCOS but my bloodwork is fluctuating on those hormones (androgens, LH, FSH, etc.) and my reproductive endocrinologist is a little confused. There's a reason I get migraines and other types of headaches on a daily basis. There's a reason I'm having double vision, most noticeable at night. My pineal cyst is considered large--it may be larger at this point since it has been 13 months since my last MRI--and it's causing problems for me. There's no getting around it. The only question is then: Are these problems manageable so as to avoid brain surgery? At this point, I honestly don't know. If they keep getting worse, I'm really screwed. It's hard to tell what the original symptoms are, and what are the symptoms of the symptoms and the symptoms of the drugs I'm taking. Is the transient anemia from the thyroid disease? Or is it from taking aspirin and Arthrotec? Are the headaches from allergies I have been diagnosed with, or from the pineal cyst itself? Is the PCOS a separate issue, or is it a result of fluctuating/off-balanced hormones being sent by my pituitary as a result of the cyst?

I have so many questions and so few answers. Fortunately, the neurologist (neuromuscular specialist) and the ENT both said that I could come to them if I really needed a doctor to be on my side and push my case forward so I can rigorously figure out what the hell is going on with me. The neurologist gave me the names of some other prominent neurologists and a neurosurgeon in the area who specialize in brain tumors. I think I'll have to begin investigating this route as soon as I can. I don't have time to waste if I want to get better one day.

I also have to see a gastrointestinal specialist to potentially have my upper-GI tract scoped, as my ENT ordered. He wants to figure out the real cause behind my acid reflux and paralyzed vocal cord. A CT scan of my neck turned up negative (even for that swollen lymph node in my chin, I think), and some bloodwork he ordered came back alright. Even my TSH was in a normal range. I have a standing order for some other bloodwork to be done, but I can't get it done until I reestablish health care. Isn't my life grand? I'm the person who needs health insurance the most, so it's irritating that I was kicked off of it for a reason that wasn't even my fault (I won't bother going into details).

That's a "quick" update for now. I'm off to take a much-needed nap since my sleep schedule is non-existent and I stayed up all night. I did take a Provigil today and not only did it take away my appetite (no wonder I've gained weight without it; I have no metabolism and Propranolol puts me to sleep for the entire day so I'm in a live coma of sorts), but it makes me feel much more alert, motivated, and happy. The "happy" part is weird to me...until I looked it up and discovered that Provigil might have anti-depressant properties. Interesting! I just feel more upbeat and alive when I take it. When I don't take it, which is most days, I'm a zombie that can barely muster up the energy to walk up a flight of stares, let alone walk as much as an average human being should be walking on a daily basis.

Keep your fingers crossed for me, everyone, and hopefully the next time I write I'll not only have health insurance, but another update on visits to the doctors'.

So I had a quick thought (and it has to be quick since I need to start studying for a midterm that's happening in three hours). My pineal cyst is fairly large. What if it isn't a "cyst" and something happened...the thing that showed up in my CT scan in my pons (they claim it's an artifact but they weren't sure--neither the junior nor the senior radiologists reading my file). I found a brief mention of this in a medical article online:
"Drop metastases from tumors in the pineal region are not rare [3], but if they involved the pons, they would more likely result in defects of cranial nerves V–VIII." (http://www.ajronline.org/cgi/content/full/186/3_Supplement/S224)

Please note that the sensory nerves involved in swallowing are:

    * Trigeminal (cranial nerve V)
    * Facial (cranial nerve VII)
    * Glossopharyngeal (cranial nerve IX)
    * Vagus (cranial nerve X)

(http://stroke.about.com/od/supportgroups/qt/CNSwallowing.htm)

I hope having a TIA (if it was ever a TIA) didn't cause damage to my swallowing abilities. But this is just getting ridiculous. I'm tired of having a feeling of a lump in my throat...and difficulty swallowing and breathing normally. Sometimes, I even forget to breathe.

By the way, my dentist said he felt a swollen lymph node under my chin on the left side. I KNEW there were some swollen ones there!!!!! My stupid GP wouldn't listen to me, though. Argh!!!

Interesting. I'm becoming ever-more suspicious of my pineal cyst since my pupils are now pretty dilated (cranial nerve III) in normal lighting (it hurts to walk outside more so than it ever has before...and I used to consider myself to be photosensitive before!), and I still have problems with balance. Not to mention headaches that just never seem to go away...they definitely aren't migraines, and they aren't daily headaches because I feel a lot of pressure with them and sometimes sharp pains. Pressure is a big problem for me, though.

Some other good articles I'm reading through about pineal "cysts" (they aren't all about cysts, oh well) and the problems they cause:

--http://www.ncbi.nlm.nih.gov/pubmed/16791430

--http://books.google.com/books?id=c3I-PFkMN2YC&pg=PA900&lpg=PA900&dq=cranial+nerve+pineal&source=bl&ots=o2CCCG5AmA&sig=0TiZmVhOAtfctT6ijrY-Ee-Nn_Y&hl=en&ei=SPkSSpPqCuHgtgehgumWBA&sa=X&oi=book_result&ct=result&resnum=4 (says that pineal tumors cause problems with upward gaze...which I have...and absence of pupillary light reflection, which I am only now noticing)

As much as I want this thing out of my head, this phrase makes my blood run cold: "Removal of pineal region tumors is associated with high mortality and morbidity." =(
(http://neurosurgery.dergisi.org/pdf/pdf_JTN_102.pdf)

Here's where I stand at this point: I'm seeing a litany of specialists for a litany of symptoms that have grown progressively worse over the past year. I suffered from severe fatigue for several years prior to the onset of many of the symptoms I have experienced for a year now, but aside from this, my only other symptoms (looking back) would have been weight gain, puffy eyelids, and headaches.

In the past year I've seen or am seeing a neurologist, rheumatologist, neuro-opthamalogist, cardiologist, gynecologist, endocrinologist, allergist, and pulmonary specialist. I've been diagnosed with idiopathic hypersomnolence (aka I'm really tired, but they don't know the cause), fairly severe allergies to dust mites and grass pollen, common migraines, Hashimoto's with sub-clinical hypothyroidism (though my Endo seemed to retract her Hashimoto's diagnosis today...), a pineal cyst, polycystic ovarian syndrome (PCOS), and marked sinus bradycardia.

Here's what worries me. My TSH is now in a normal range--1.70--for the first time in a year, but I feel as though NOTHING has changed, and my Endo doesn't think any thyroid problem is causing my severe symptoms. Currently, the symptoms that worry me the most is my decreased red blood cell count--a trend I've noted throughout all of my CBCs over the past year, my increasing white blood cell count (it's doubled in the past year alone), an increase albumin/globulin ratio, occasionally elevated liver enzymes, easy bruising, even with my platelet count being normal (but slightly decreasing), petichae popping up in random places on my body, itching/increased skin sensitivity (which I attributed to my elevated liver enzymes, but these enzymes are no longer elevated!), worsening swollen and painful joints, and especially this constant, unexplainable fatigue. My EBV levels are fine (though I had copies of EBV DNA in my blood, but they were considered in a "normal" range--is it even normal to have any EBV DNA in the blood???).

I'm trying to keep this short. I just wonder what I should do now. My GP doesn't want to see me until late July (argh!), the endocrinologist said that the area in my throat where I said I felt the "lump" in my throat was above my thyroid, and my neurologist doesn't think the pineal cyst is a problem. He just treats me for migraines and I've had three transient ischemic attacks in the past few months from these. I also feel very anemic--when I stand up, my vision will sometimes black out for a few seconds. I get really light-headed and dizzy easily, and I'm constantly in a brain-fog.

I'm going to continue on my thyroid medication, but I don't think it's going to help me because I haven't felt any change whatsoever, and I've been taking it for 7 weeks. My TSH has responded to it, but my symptoms aren't! I wonder if my thyroid is just a casualty of an underlying disease, and not the cause of it all.

Any thoughts would be greatly appreciated. Should I see a hematologist, next? Oncologist? Another endocrinologist (this one was very reputable)? As of now, I'm getting worked up for partial seizures by my neurologist, patent foramen ovale by my cardiologist, and PCOS by the reproductive endocrinologist I will be seeing in a few weeks.