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.
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.
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.
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!!!
- Current Location:Bigelow 7
- Current Location:in the car
- Current Mood: aggravated
- Current Music:rascal flatts
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.
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 :)
- Current Location:big comfy chair
- Current Location:home
- Current Mood: chipper
- Current Music:smile uncle kracker
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?
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?
- Current Location:home
- Current Mood: anxious
- Current Music:breathe in again