Discussions By Condition: I cannot get a diagnosis.

I have many random disorders, any underlying illness possible? (cancer/autoimmune?)

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: lissalaine
  • August 23, 2011
  • 09:14 PM

Hello all,

I have come to the internet out of sheer desperation after years of constant medical problems that seem to have no end. My GP is not very helpful, and it's difficult to link together my issues because I see so many different specialists. It is getting to the point where my medical problems have taken over my life and I would like to just know what is wrong (if anything).

I am an obese 20 year old female who has been battling multiple health issues since I can remember.

I had multiple (every 2 weeks or so) ear infections as a child; my ear drum popped twice so I have slight hearing problems in one ear. At seven, my tonsils and adenoids were so large that I suffered from severe sleep apnea, so they were removed as the ENT was worried about brain damage. When I was six, they discovered that I was missing 9 adult teeth and they considered it to be a genetic defect of some sort, the cause was never investigated. Aside from cholestrol issues at 8 (solved through the Atkins diet, ironically enough), I was very healthy from about age 7 to puberty. At this point, I was just a little chubby.

Puberty hit, and I gained probably 70-80lbs in a year. Although I developed in all other ways, I never produced a period. This was not dealt with until last year. Around this time, I started suffering from gastro-intestinal distress but it was tolerable, so life continued.

Around 14, I noticed that my left pupil was constantly dilated. I had multiple CT scans, MRIs and was referred to an optometrists, ophthalmologist and neuro-opthalmolgist before I was diagnosed. They had suspected a brain injury/tumor (cancer was brought up), but it turned out to be Adie's tonic pupil. Adie's can be caused by lesions on the neurons/muscles that contract the pupil, or it has no cause. There is also no cure. Doctors were unable to find a cause for my Adie's.

Shortly thereafter, I discovered a large lump on my right foot. Doctors orginally thought it was osteomyelitis, and then possibly a form of sarcoma or similar cancer. I underwent multiple xrays, CT scans, MRI's, MRI's with gadillium and radio active bone scans. They still weren't positive what it was, but they decided surgery was the best option so it was removed in January. It turned out to be an ostechondroma, so they removed it, I spent 3 months on crutches and they told me that there was less than 5% chance that it would ever recurr. It had recurred by the time I went back for my 3 month checkup. Because of it's incredibly fast regrowth, they were worried it had come back as a malignant lesion so I underwent surgery again in August of the same month. Turned out it was just a regrowth of the osteochondroma. They removed a ton of bone from the surrounding areas as well, so I was non-weight bearing and on crutches for nearly 6 months this time. By the time I went for my 3 month checkup, it had regrown. I was referred to a new, younger orthopaedic surgeon for another surgical option. He wanted to remove all the metarsarals from my foot and recreate them using grafts from my hip bones and then fuse the foot together. The recovery period would be horrendous (at least a year non-weight bearing, and then he wasn't sure if I'd even have less pain as a result). I decided to forgo the surgery and instead live with pain and nerve damage as a result of the surgeries. The foot is just xrayed 3x a year to make sure it doesn't make a malignant transformation.

At this same time, I also had dental implant surgeries to try and correct my missing adult teeth. Also, my gastro-intestinal distress became so severe that I couldn't function properly so I was sent to a gastro-entrologist as my mother sufferes from Crohns disease and they were afraid I did too. However, I read a magazine article that talked about this thing called Celiac Disease and I seemed to fit all the symptoms. My GP sent me for a blood test, but it came back as negative. She suggested I go gluten-free anyways because sometimes the blood test is wrong. I went gluten free and almost all my gastro symptoms disappeared. I went for an endoscope and colonscopy approximately 8 months after I went gluten free, but by then (as the gastro-enterologist explained to me) any damage to the villi from Celiac would have been healed, so no problems were found.

I had to have my gallbladder removed in Feb of this year due to gallstones, after which I developed GERD. I have some mild arthritis and gout in the toes of my bad foot. I went to an OBGYN because I was 19 and had never had a period, and testing concluded that I have PCOS, or poly-cystic ovarian syndrome, which explains my excessive weight gain and lack of period. (I do have bad eating habits, but I should not be as large as I am - I have always been a very active person so the PCOS/hormonal imbalance explains some of that).

Finally, for the last year or so, I have been overwhelmed by all consuming exhaustion. I need about 12 hours of sleep to function, and then that can usually get me through class or a bit of work, but then I need about a 3 hour nap if I want to do something in the evening. This has gotten increasingly worse - like I mentioned before, I used to be incredibly active, up all night, hanging out with friends, galavanting around town, etc. I was a competitive horseback rider until a few months ago, when I had to sell my horse because I could not physically handle it anymore. I was given 2 at home sleep apnea tests - the first came back as indictiative for central apnea, meaning it was brain issue that was causing me to stop breathing at night (I was expecting obstructive sleep apnea, because of my obesity). The second test came back as inconclusive. I am currently on a 2 year wait list to get into our local sleep clinic.

A little over a month ago, I found a lump in my throat. The week later, I fainted at work - something that has never happened. The ER doc performed blood work and an EMG, said it was probably heat exhaustion, which doesn't make sense at all. He also checked my throat lump, and said it was likely a cyst so he sent me to an EMT (the one who removed by tonsils/adenoids 13 years ago). I had my appt with the EMT today, and he thinks my tonsils and adenoids have regrown. I have to see him again in six weeks, and if they are larger, he will remove them.

So basically, if you read through my novel, thank you. Here is a summary plus additional information: Tonsils/adenoids removed to due obstructive sleep apnea, missing 9 adult teeth, Adie's tonic pupil, unusually recurrent (3 times) osteochondroma, Celiac disease or at least gluten intolerant, PCOS, gallbladder removed due to gallstones, GERD, excessive exhaustion, possible regrowth of tonsils/adenoids. I am on medication for depression (prozac, only for the last few months, exhaustion predated the meds) and GERD (since March). I also have frequent dizzy spells, incidents where my eyes shake, recurrent headaches and a recurrent rash that is found in my inner elbows and across my abodomen (not weight related, we checked everything!). I am always incredibly flushed and incredibly hot - even with my air conditioner set at 65F, I wake up sweaty and clammy.

My GP doesn't think of any of this is related, but she has given it very little thought. I am trying desperately to improve my general health, but I often don't have the energy to get to the gym, let alone eat. I really really hope that some of you have an idea because I am desperate. I have no idea if any of this is related, or if we're missing something, or if my tonsils are really regrowing or if this is just another medical crisis my body has created. It is starting to severly affect my quality of life and I would appreciate finding a way to get better!

Thank you to anyone who reads this. Please let me know if there is any more information that you need.

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5 Replies:

  • I am sorry you are having all those problems, and I am sorry your PC physician is worthless.  I, too, suffer from arrogant-uninterested-doctor-syndrome.I do not know what is causing your problems, but my doctor has also suggested I have that poly-cystic ovarian syndrome.  They have decided to dose me with pile of hormones over ten days, then cut them off abruptly to force-start a period.  This is not a good idea, and they haven't even done any tests of my hormone levels, yet.  You are not alone when it comes to terrible medical practices.By the way, your thyroid has a lot to do with missed periods.  Also, magnesium and vitamin D levels have a lot to do with your thyroid function.  I have a history of vitamin D deficiency, and guess what, they won't listen and are still going to dose me with hormones, even though my thyroid level is high, according to the guidelines set by American Academy of Clinical Biochemistry.I went online, desperately looking for anything or anyone that could possibly shed some light on my situation, the above being the LEAST of my worries.  I ended up conacting the NIEHS, which is the National Institute of Environmental Health Sciences, and they sent me some information.  I'm not saying that my doctors would listen to any of it, but I'm working on switching my doctors, so.... yeah.contactniehs@niehs.hih.gov is the email, so you don't have to look it up.I hope this helps you.If you can afford it, I hear the Mayo Clinic is really good.  you might try to contact them?  They have a website that you can just google.
    olde one 2 Replies
    • August 24, 2011
    • 01:57 PM
    • 0
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  • Hi there,sorry to hear that you have so much trouble with your health. I don't have any medical advice (don't play a doctor on TV either) but here is what I would do.I don't know what kind of food you are eating, but if it is SAD (Standard American Diet), I would definetely look into Dr. McDougall (www.drmcdougall.com), Dr. Esselstyn, Rip Esselstyn etc. Also a good read is the book "China Study", the biggest study ever done on humans food/ health connections. Hope you will find a solution soon.Petra
    PetraHann 2 Replies
    • August 25, 2011
    • 00:29 AM
    • 0
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  • Some of those symptoms sound like you might have some form of hypersensitivity to your own environment. It could be a chemical or a electromagnetic hypersensitivity. Do you live in a large metropolitan area????
    dboots 96 Replies
    • August 25, 2011
    • 05:44 AM
    • 0
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  • Have you been tested for insulin resistance? IT can accompany PCOS. My friend was diagnosed with with it and her symptoms were tiredness, depression, headaches and walking up in a sweat (also generally feeling fuzzy and confused a lot).
    Anonymous 42,789 Replies
    • August 25, 2011
    • 11:49 AM
    • 0
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  • Some of those symptoms sound like you might have some form of hypersensitivity to your own environment.It could be a chemical or a electromagnetic hypersensitivity.Do you live in a large metropolitan area????Hi! That's an interesting theory, but I don't live in a large metropolitian - the city is only approx 100,000 people. I did, however, spend 5 years pretty much living in dirty farm conditions where I worked/cleaned/occassionally slept. However, I moved my horse into a normal and cleaner farm environment 2 years ago, and I also sold him several months ago. Could any of that have affected me?
    lissalaine 1 Replies
    • August 26, 2011
    • 10:26 PM
    • 0
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