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Any ideas?


I know this is long and it's also x-posted everywhere I could think of. I'm desperate. Thank you for reading. I don't know if this community is active anymore, but I'll chance it.

I got sick last january (2011). I started getting extremely tired, falling asleep in class, sleeping all day, having troubles being awake more than a few hours. I also felt really light headed and dizzy a lot. I'd be nauseated and have diarrhoea. Around March I could be up for about 2 hours before I had to go lie down again. When I overtaxed myself, by doing really "simple" things, like having a doctor's appointment or going to a class, I'd experience "attacks" or episodes (I haven't been able to figure out what to call them) of extreme fatigue, it'd feel like someone very suddenly injected me with a large dose of tiredness, coupled with light headedness and shaking. My eyes would water and my vision blur (whether from being so extremely tired or a separate symptom, I don't know). My body would feel heavy, it'd feel like I really really didn't want to move. However, I could move, if I focused, I wasn't paralyzed, I'd also get an.. uncomfortable feeling in my body, like I was being squeezed and compressed? This is really difficult to explain.

In February, I saw a GP for the first time. They started running tests, which all came back normal. I saw three different GPs before I was referred to an endocrinologist because my cortisol levels were quite low. The endo put me on Hydrocortisone and also put me on sick leave (this was in May and I had barely been able to finish my courses, thanks to very understanding teachers and a mother who at times had to read out loud to me from the course literature). Initially, after the hydrocortisone and the sick leave, I got a little better. I was off sick through the summer and the plan was that I would continue my studies in August, now on practical training. I was skeptical, but hopeful.

I started placement at the end of August, but after about a week or so, I started doing really badly again. I pushed on, hoping that it would get better, but after about two weeks of not being able to be there much and the return of all my symptoms, I contacted the endo and he once again put me on sick leave. He consulted another specialist who deals solely with cortisone problems and it was decided that since I was still so ill and had had no improvement of the cortisone, I would slowly come off it. (I did and have noticed no difference).
More tests were done, among them a Vitamine D test, which showed that my levels were very low and I was put on supplements.

Slowly, I got a little better during the fall when I was on sick leave. I'd be able to be up for more hours, not have as many "attacks" etc.

The endo also referred me to do a gastroscopy to see if I had celiac disorder as well as to see how my body deals with nutrients (I think). I've gotten the results and it was all normal.
They also noted that my PTH levels were a bit high and explained that this could be because of the Vitamine D deficiency and that we will monitor it for now.

Last spring I also saw a neurologist and did a MRI scan of my brain. I have also seen a sleep specialist and done a sleep study and a MLST. They've surmised that I don't have narcolepsy (which makes sense since I don't actually fall asleep suddenly) and that the MRI scan was clear. I have Delayed Sleep Phase Disorder.

Now I have once again started university, hoping that I would be able to do it this time. It's the second week now and I'm already feeling the return of the symptoms. Extreme fatigue, I kept nodding of in class yesterday, I've had "attacks", I'm nauseated, dizzy etc.

I have a phone appointment with my GP on friday. I don't know yet if I am going to ask to be put on sick leave again. I really don't want to, I love studying. But I feel like crap.

The symptoms get worse when I'm active. They get worse if I go to class or coffee with friends or an appointment. They get worse when I try to focus and concentrate. If I'm already tired, it can be completely impossible to focus on a text, especially if it's something more difficult than reading my Facebook page. I have trouble focusing and concentrating. My memory is worse. When I get tired, I slur worse and I apparently look white.

I don't know what's relevant, so I'm writing everything. I have hypothyroidism, but my levels are stable and I've asked the two endocrinologists I've seen if that could be a participating cause and they've both said no.
I have Bipolar Disorder, but again have been stable for a few years and both the psychiatrists I've seen have said that it is not the reason for my symptoms, nor is my medication (I have had many conversations about this).

All the doctors have said that the few things they have found - the Vitamine D deficiency, the elevated PTH levels, the sleep disturbances, can be pieces of the puzzle but that they don't explain the whole picture. That I shouldn't be this sick.

Please, if anyone has any ideas - no matted how far fetched - let me know. I'm desperate. I have had a lot of blood tests, so if you think of something, I'll let you know if I've had it or not. If you think of a diagnosis or cause, let me know and I will bring it up with the doctor. The one thing that keeps coming back is Chronic Fatigue Syndrome and possibly Lyme Disease. Anyone know anything about it?

I know this is long, but thank you.


spread awareness!

Hey guys! So, May is national Ehlers-Danlos month and i'm trying to do all I can to raise awareness! if you want to go all out to support this rare chronic illness you can wear zebra striped ribbon and zebra striped clothing all month, but if that's too much to ask, you can all spread a litte awareness just by "liking" this facebook page and suggesting it to friends :) we can all help in little ways.

God bless,


To all of my friends on invisiblyill,

I haven't been on this site for a while, and probably won't be anymore. However if you're still interested in following me on my journey, I've made a medical journal/blog that you can subscribe to.


There you will find my story and journal entries along the way. By going to journal and checking a checkbox, you can subscribe to my updates via email or text.

Feel free to say hi on my guestbook on CaringBridge, too, especially if you have a CaringBridge site and want to share your link with me!

Thanks for all the support all of you have given me so far.


It is now day eight of my admission and I am bored off my bumb... they are not to nice with my pain meds for my stomach and dont get the idea that I cannot swollow pills no matter how many times they stick them in my face... grr Im not the biggest fan of my night nurse at all she really pisses me off and I am hoping I dont hav her for the rest of the week because I swear I might explode.

I am hoping now that my favourite nurse is coming on I will be in a better mood because I have been in the worst mood all night because I dont know

ok so my nurse is here and already my day is looking up... she came in gave me my meds and now I feel soooo much better! ok well Im off to snag the shower before someone else does!!!
I have just recently been diagnosed with insulin dependant diabetes... due to a medication I am on which tends to cause it... My sugars have been all over the place no matter how much I try to control them with insulin... MY PCP doesnt want to deal with it and says that if I have any issues to go to the ER at MGH and maybe they can help me so i have gotten use to the idea that im kinda on my own... But recently they changed my insulin from a normal insulin or (regular) to a high concentrated version without even telling me and when asked about it they blamed it on the endocrenologist (sp) that I wont have for another month and a half (waiting lists stink!) So now Im just annoyed by the whole thing because they are either changing my meds or forgetting about filling them and insulin is what is kinda keeping me sane at this point because I get pretty grumpy when Im hyperglycemic.... so I guess that is all the whining I can do for now... I have to go into mgh later today anyhow and see what they say about trying to put a rush on endo... hopeful smiles and giggles

Really rare is what he said...

So, I've posted here before, but not for a while. I've had some rectal bleeding, some severe side pain, anemia, and some other unpleasant issues over the last 6 years. I've had numerous tests, including colonoscopies, endoscopies, barium x-rays, defocographies ...

On Sept 27 I had my 6th colonoscopy and 2nd endoscopy. Yesterday I went to the dr. to get the results. In the recovery room he told me that I would need to have surgery (I've had 2 previously for this issue). When I saw him yesterday he told me that I have hemorrhoids (again) and that in the over 10,000 patients that he's seen in his medical career, only 2 others have had all of these issues due only to hemorrhoids, but that is what is wrong with me. They can't find any triggers for them (and they've looked and tested for all normal and abnormal triggers), and all normal treatment (and abnormal treatments) have not worked, either. The severe bleeding, the anemia, the everything that I've had, is due to the hemorrhoids. This, as he stated, is highly rare and unusual, but that's what is happening. I have to have another small bowel barium xray coming up and he wants to do a capsule endoscopy so that he can test the small intestines just to make sure that there isn't anything in those that he's missing, but he doesn't think that they will find anything. After those tests are over, I'll go back and see him Nov 24th to get those results, and then we can schedule time with the surgeon to have them removed. He said that because of the severity of them, and the way they present themselves and that they do not respond to treatment, that I will continue to need surgery throughout my life, and if pattern holds, that I will need one surgery every 2-3 years. I'm on a no sugar, low carb diet because he said that the make up of those foods react badly to the bacteria in my intestines, making the hemorrhoids angrier (like they could get any angrier)...

I'm going to call the surgeon (I know who I'm using already .. the same one that did the other two) because I have a wedding in February (me ... I'm getting married) and I want this done and over with before Feb. 19th. And I don't know if thats possible with the way that the dates of being able to see everyone has been laid out. I don't know if it's possible, but it's worth a shot if nothing else. I don't want to start my marriage off with needing surgery.

and the blood work came back

Sometimes I just dont understand what goes on inside a doctors head... My cough has been getting worse for the past week or so and my speech pathologist was getting worried about it so she told me to make an appointment with my PCP... Unfortunatly my PcP doesnt work on fridays because he is the head of the department and does that stuff so I had to see a nurse who was extremly nice.... we talked and she listend to my wheezy restricted lungs and sent me for a chest x-ray which showed a little back up and inflimation but no seen pneumonia... she was suppose to send me for blood tests but called the doctor first who sent me to the ER to be admitted... BAD idea althought the doctors and the nurses in the ER were absolutly amazing and seemed to recognize that I was completly self reliant on taking care of my self... like keeping tabs on my blood sugar and treating with insulin I waited in the er for what felt like an eternity... watching the clock slowly tick bye... I had my dvd player with me so I watched boondock saints, mamma mia,and pay it foreward all while on a continuous nebulizer. twelve hours later I was admitted I was so excited to finally get some sleep... I got all checked in and they resumed the oxygen and nebs when the floor doctor came in and looked at me and said... "we are doing nothing here that you cannot do at home, you have a great PCP and really great follow up comeing up, so I am sending you home with a higher dose of Prednisone" well the nurse came in dumbfounded she couldnt believe it! I got up got dressed signed my discharge papers and left not noticing that the stupid doctor never wrote a script for the higher dose of prednisone.

I see a pulmonologist on Tuesday so Im not really that worried but I cant believe I waited twelve hours to be admitted on my PCP's request and they just sent me home! Gosh! and at this point I dont even know why they admitted me in the first place.... I was too tired at the moment to even ask any questions... Im a very nice person but at that point I wasnt really acting the part.

Now its back to crawling into bed and watching a movie because I am exhausted! But as always smiling my way through :)

a quick update

ok.. to say that we have any progress this week is to lie... Im going in for PFTs on monday because apparently bubbling in your chest and green phlem... not so much lol .. so I might be hospitalized again they might just keep me on out patient iv meds... which is stinky bc for some reason we are not fans of PICCs... doctors sometimes confuse me... but I trust them... I havent heard back from my other blood tests so Im guessing I am CF free... which is a good thing... thank goodness.. made an appointment with endocrenology which wont be until december but I do get to go back to learning how to breathe properly a week from today... and I cant wait! lol so things are going ok... as long as I dont have to end up back inpatient... as much as I love being stuck in a room (I do get a single though)

Cowering behind the desk

I go see a new glaucoma specialist tomorrow. The one I've had for the past 8 years or so, outside Seattle, always said my eyes were 'stable'. However, I was told that she only took the worst cases. So I'm still confused.

Then we moved to Maui and until I found this guy, Dr. Carp, (sounds fishy to me...) I would have had to go to Oahu instead. Interisland flights get expensive, so Dr. Carp it is. If I'm lucky (or pathetic, my wife spoils me terribly) maybe I can con lunch out of it. Or at least Starbucks.

That's my philosophy - something crappy to do? Have something to look forward to afterward. It takes the pressure off.

Now would I rather act scared, or grumpy to cover it up?

screaming from the roof top

Ok so I went into boston yesterday...
I saw the department head of Adolscent medicine in one of the top hospitals in the country... he told me the truth... I was happy he did... every doctor Ive seen has tried to sugar coat these things which i need to know... but at the same time... Im scared... the news is never good... what do I do?

My lungs... they tell my Chest x-rays always look good unless I have yet another case of pneumonia... as I talked to the new doctor about them... he looked at an old x-ray from a month ago... he looked at me and said... how is this lung healthy.. he pointed out the scarring... he looked at me and asked.... have you been tested for CF? and I looked at him and giggled... me CF? Im the chubbiest... Cfer EVER!... He simply looked at me then looked back at x-ray and said either way your lungs are really really bad... My heart sunk... So all this time... ive been told Im fine... when really Im not....

So we did blood test after blood test... after ten sticks they got the blood they needed... simply I get too much blood taken and I have no veins left..

Now I wait for them to call... I sit here scared of what the voice on the other side will say... am I going to be Ok?