My doctors are running out of ideas...please help me

[Jules77733]

I've been to quite a few doctors in the course of the past five months, including an endocrinologist and a neurologist, but what's making me sick is still a mystery. They're all running out of ideas, taking their time to run tests that all come out normal, or trying to get rid of me, since they can't explain what's wrong with me. I'm a complicated case, I guess you can say, in all likelihood because my immune system is getting so run down at this point that common viruses are moving in and easily taking up residence. I know this isn't psychological (most of it, anyway) because I'm the last person to ever usually make a fuss about my health--now, I'm really starting to get worried and I would appreciate any insight anyone can give me into what might be going on.

Here's what they do know about me:
--I have obstructive sleep apnea, though no obstruction was ever found (I'm on CPAP and 400mg/day of Provigil for this)
--I have severe allergies to dust mites and grass pollen (I take Clarinex and Rhinocort Aqua daily for this)
--I have a 13mm non-enhancing pineal cyst (no one seems to be concerned about this)
--I have a high titer for EBV (I realize how common this is and how it will always be positive for me)
--I recently tested positive for Parvovirus B19, though I have not received any treatment for this
--My TSH was ~5.5 when I first saw a doctor in early May 2008 when the onset of many of the symptoms started, suggesting decreased thyroid function, but my thyroid iodine uptake scan was elevated, which suggested increased thyroid function--my TSH fluctuates over a point back and forth within the normal range, but my endo says he won't treat me for any thyroid problems
--The right lobe of my thyroid is at the high-normal end for size, and my thyroid texture is slightly heterogeneous (it should be homogeneous)
--Negative for: mono, Lyme disease, Wilson's disease, Rheumatoid arthritis, lupus, myasenthia gravis (sp?), toxoplasmosis, lead poisoning, thyroid antibodies, strep throat
--My LDL cholesterol was slightly elevated at one point during the summer and my total cholesterol was slowly creeping up; both have since decreased a bit
--My RBC and WBC counts are within normal range, but they appear to be decreasing
--I'm taking Meloxicam for joint pain and Topomax (low dose--25mg) for "migraines" that my neuro thinks I have

I'm feeling terrible tonight, with a fever of 99.6 (body temperature has normally hovered at 97.3), most of my face flushed dark red out to my ears, a rash down my neck spreading across my chest and down to my forearms, headache and head pressure, lightheaded feeling/heavy head if that makes sense, full body tremor most noticeable in my hands, swollen and painful joints, mainly in my hands, edema in my legs, abdominal pain that is mainly soreness under my lower left ribs and sometimes pain under my lower right ribs too, and a lump in my throat to accompany neck swelling and tightness. My nasal passages are also really inflamed and red, my throat is bumpy in the back and mainly red in color, my tongue has red bumps all along the front and some papillae are starting to disappear on the side, the veins under my tongue are bulging, and I have weird white discolored patches on my top lip but not my bottom lip.

In early to mid-April 2008 this all began, with some of the first symptoms listed, then progressed to include the rest of the symptoms:

neck swelling and tenderness on right side
swollen cervical lymph nodes
tremor, mainly in hands but felt like entire body at times
hair falling out more than usual
dry skin
freezing all the time-->this has progressed to heat intolerance some of the time, usually at night (go figure?)
losing weight (lost 30 pounds since September 2008, but lost the first 20 within a month or two--also when I began Provigil)
loss of appetite
abdominal pain
terrible, crippling headaches and intracranial pressure
nausea and dizziness with some headaches; I threw up because of one of them
heart palpitations
can't drink alcohol anymore--it hurts my stomach and makes me feel sick
constipation
diarrhea when not constipated
joint swelling and aching, started in knees, now mainly in hands and wrists
double-vision mainly at night (when looking at road-signs) but also during day when looking at LCDs, etc. (this has been going on since late 2007; I just thought I needed new contacts but I've since had this fixed)
extreme photosensitivity
brainfog
dark spotting above upper lip/maybe additional hair growth?
irritability for no reason (I never used to be like this)
mood swings, including depression for no reason (also never used to be like this)
irregular menstrual cycle
edema in the legs
ascites (swelling in abdominal region due to fluid build-up)
lump in throat is still there, and it's getting more and more difficult to swallow and breathe especially with nose blocked
more easily confused, can't think straight...when I used to be very sharp
memory is worsening
receding gum line
sometimes, in additional to the soreness on left side of abdomen and the tenderness/pain on right side, I get a soreness right beneath my sternum
lack of desire to do anything (completely unlike me)
extreme fatigue that's worsening (I've been tired most of my life, but over the past few months it's been getting worse)
lower than normal blood pressure (went from 115/85 to 98/60)
higher heart rate (went from 65ish to 80ish)
lower than normal body temperature (went from 98.6ish to 97.3ish--this is accounting for cyclic changes, too)
puffy eyelids
visble increase in vascularity
dimpling of tissue at top of breasts on chest
slow, outward protrusion of chestbone and, particularly, right clavicle
intermittent fevers of up to 100 degrees, though usually around 99.2 - 99.4 and these happen every few days

I've been trying to schedule an appointment with a rheumatologist for the past week, I've got another neurologist lined up, and I'm thinking about seeing another endocrinologist for a second opinion. I just have no idea what's going on with me--is it one thing? two things? eight things? and what IS causing me these problems besides maybe the parvovirus giving me joint problems (that have lasted nearly three months, which is odd for this virus)?

I'm nearing my wit's end, I'm expected to begin graduate school soon, and I keep feeling worse and worse each day no matter how positively I think and how many vitamins I take, or how many of my medications I cut back on and how much rest and exercise I can. Can someone please help? The specialists refuse to look at any symptoms besides the ones involving their specialty, and I think this is systemic and they need to consider everything, not just a few symptoms that they typically work with. I have tried to push them gently and politely to consider other options and be aggressive in my treatment, but they really seem dumbfounded and are content to just have me return in 1 - 3 months to see what's changed by then.

Does anyone have any thoughts on where I should go next? Ideas on tests I should have done, and why? I want more imaging done on my neck/chest/abdomen but they keep trying to avoid that so as not to expose me to radiation. At this point, I could care less about radiation. I just don't want to feel like this for another 5 months. Any other diseases--rare or otherwise--I should look at being tested for?

If you read all of that--THANK YOU. I need all of the help I can get right now, and I'm hoping someone has lived through some of these symptoms or seen these symptoms and can shed some light on what might be going on before it causes any permanent damage to any of my organs.

[Jules77733]

I'm taking Provigil, which could cause shakiness/jitteriness, headaches, and the elevated heart rate, but I never had a problem with tremoring until March or April 2008, and I had already been on Provigil since September 2007 by this point. I've also since really cut back on Provigil (there are days where I just don't take it) and I will still get a headache and I'll still have the tremors. Aside from Provigil, I was only on Clarinex and Rhinocort Aqua, both for my allergies, and neither of which had any serious side effects that I'm aware of. It's definitely a good thought--I had considered medication as contributing to my problems, and I'll bet some of them are. I've added Meloxicam and Topamax to the list, but I've cut back on taking Meloxicam and just learned to live with the joint aches/pains.

My spleen and liver are both swollen now, according to my GP, and I read somewhere online that this can cause the sinuses to become inflamed...so maybe this is what happened with mine. I also discovered from my CT scan that I have atelectasis in my left lung (the swelling in my neck is on the right side, go figure), which is a little disturbing...so I plan on asking my doctor where this might be coming from.

I'm heading to a neurologist associated with a teaching hospital in a few weeks--University of Pennsylvania. It took over two months to get the appointment, though, and it's like that for most doctors at those places. I also had a friend of mine talk to a few endocrinologists he knows at Columbia University, and they were stumped by my case and recommended I have a full body scan done as soon as possible. I told this to my endo here, as well as my GP, and they both said, "Ehhh that's a lot of radiation for someone so young." I was very annoyed this was their only response, because it's not as though they have any better ideas or any clue as to what's going on!!!

I was determined to have sleep apnea through an overnight sleep study, but they weren't able to figure out where the obstruction was during that study. I had a second overnight sleep study done, this time, with CPAP to determine if this would help me by getting rid of my apneic episodes. They know that I stop breathing ~32 times every hour without CPAP, and that when I was put on CPAP, there was significant improvement (I don't know what the numbers would be for the relative improvement--this wasn't listed on the report I received). I don't believe I had any limb movements during the night; this is something they usually mention to patients if they observe it, and they didn't mention it to me, so I assume this wasn't a problem. My CPAP machine does record data about my usage of the machine to a small chip in a card, but I can't read this information; I can only mail the card to the company that supplies the machine for them to chart my use. Apparently, I was using the machine correctly for the first week, so I haven't had to mail in another card to them since. I assume it's therapeutic for me, but I still wake up with headaches some days, and I'm still tired (right now I'm pretty tired and I slept for 12 hours last night, with CPAP). This is why I like to have a Provigil prescription--it really helps me when I'm exhausted, which seems to happen even while I'm actively using CPAP. My ENT/sleep doctor just didn't know what was causing the obstruction since my hard palate looked good, my tongue was fine, I wasn't anywhere near overweight, and my tonsils were within the normal size range (though on the larger end). She suggested having my tonsils taken out, but she wasn't sure this would correct the problem. This makes me wonder if the pineal cyst doesn't have something to do with it........

Thanks for your questions and thoughts. I just really feel stuck because I can't push the GPs I've seen any further in their "knowledge" to help me...they've tried all the conventional and some non-conventional ideas as to what I have, and they just don't know anymore because it's beyond their realm of understanding. But then all the specialists I see refuse to look beyond the symptoms that are within their area of expertise. Thus, it becomes sooooo frustrating for me. Without considering all of the symptoms together and trying to come up with a bunch of ideas as to what I might have (including singular diseases or combinations of diseases), this will never be resolved!

I hope the university doctors I start seeing love a good challenge, because my medical history certainly seems to be one!

[Jules77733]

I agree with you...I can't shake the feeling that at least some of my problems are related to my thyroid. After all, that's where this all started in the first place! I think my TSH just hasn't been measured at the "right" time...because it's never been lower than 1.44, but I've never had it measured before 11:30am since coming home. The two times it was elevated were when I actually had it measured in the early morning (8:30am, 9am). I think if I had mine measured in the early morning again, the levels would be closer to 3 or 4, which could explain why I'm feeling uncomfortable. Though I don't know why my RAIU would be elevated, though, if I have hypothyroidism. Maybe I have a TSH-secreting tumor sitting somewhere else in my body, other than my pituitary hahaha...at this rate, we'll never find it!

I did have a CT scan with contrast done of my chest, and they found atelectasis in my  left lung, in the mid-region (an area of collapsed or "dead" lung tissue that isn't getting air). I don't know why this would be there, and it's a little disturbing to hear, but now I know why I was having difficulty taking deep breaths! One more tiny puzzle piece........

Thanks for your thoughts and well wishes. I'm glad you were able to finally have all of your medical issues diagnosed so you could be treated for them and feel better. It gives the rest of us hope! :)

[Jules77733]

I imagine there is some mold in my house, but my mom is pretty good at keeping the place very clean. My symptoms started in March/April 2008, when I had been living in a house I was renting with three other roommates for nearly a year at that point. Do you think all of my symptoms can be explained by black mold? I was tested for allergies in September 2007, and I did not exhibit any allergic response to any molds--only dust mites and grass pollen (I know you don't have to be allergic to black mold to get sick, but I'm just pointing this out in case it might be helpful). I think my doctors haven't considered this as a possibility because I moved during the course of being sick, and I'm still slowly getting worse.

Thank you for your thoughts!

[kyalami]

You wouldn't happen to have mould in your house, would you?

[Sunny602]

You sure do have quite a bit going on....Your thyroid levels are right on the fence...I have Hashimoto's and I can honestly tell you that I felt horrible when my levels were below yours (probably because my thyroid was fritzing out), my TSH did ultimately climb to the 20's before I was diagnosed and treated. I would hope that they check that level again, hypothyroidism explains alot of symptoms that you have. I also think it is a great idea that you see the rheumatologist....it wouldn't surprise me if you had something going on in that department as well.

I too am a medically complex person, docs literally had to go through each of my systems one by one, even then it was very confusing as many symptoms overlapped or just plain confused the docs because there were other disorders that hadn't been diagnosed at the time. (I have a wild type of muscular dystrophy, atypical CF and Ehlers Danlos syndrome along with many other problems...no wonder my docs were so confused!)

Keep following your gut, don't let any doctor call you nuts, a malingerer, or even blow you off. You know your body better than anyone else, don't give up trying to figure out what is wrong. Sunny

[KatEyes]

Wow, you do have a lot going on. Are you on any meds that could be causing any of your symptoms as side effects? I'm guessing your symptoms are coming from multiple sources, so you may have to attack them a few at a time. Have you tried going to doctors affiliated with teaching hospitals? I've had better luck with them because they see so much and it's their job to be curious. And the ones I know love a good challenge. I do encourage you to get a second opinion with as many specialists as it takes to get some answers.

About the sleep apnea... I am confused. You have sleep apnea but no obstructions seen? Does that mean you had an overnight study? What exactly did it show? Some have UARS, which technically is not OSA but causes similar symptoms. Did you show any limb movements during the study? Does your CPAP give you data to let you know if the treatment is therapeutic? A multitude of your symptoms could be caused by ineffectively treated sleep disorders. Work that part out so you get the restorative rest you need so that your body is equipped to handle all the other physical stressors. I'm thinking your list will be whittled down significantly if you are sleeping properly, and those things left on the list may become more clear when more concise.