Welcome To The Undiagnosed Illness Forum

HomeHelpUndiagnosed Illness ForumsRegister

Welcome, Guest. Please login or register.
February 08, 2012, 06:01:22 PM
News: If this is your first visit, please read the forum rules and guidelines

Pages:  Prev 1 [2]   Go Down
Strange symptoms going on 14 years  (Read 4181 times)

Sr. Member
****

Gender: Female
Posts: 263


damn...  there goes that idea..

regardless the point i was going to make towards the UTI, do you see mucous/bacteria or anything like that?  because urgency/difficulty doesnt necessarily mean it's a UTI unless you find bacteria in the urine


To answer your question.. because I forgot too.. lol No there isnt always bacteria or mucus in the urine. I just have some urine symptoms along with all the other stuff.


-------------------------

-------------------------
**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

Sr. Member
****

Gender: Female
Posts: 263


dang.. 28 years later my mom provided me with some VERY pertinent information, which is definately something I can take as history to my doctors appts. I am going to update my blog later but she informed me that I couldnt nurse and was basically starving to death and lethargic as a baby, I couldn't suck or swallow and anytime I tried to nurse I would struggle and it would take so much out of me I would fall fast a sleep becoming lethargic and began rapidly loosing weight, So my doctor told her to put me on a special formula so I was only breast feed a few weeks of my life and then also for the first 2 weeks of my life I did NOT have a bowel movement. My mom repeatedly took me to the pediatrician and told him that something was not right I wasnt eating nor was I pooping and I was lathargic. He kept telling her that "all babies are different" finally by day 12 of no BMs  and my mom's 7th office visit with me thats when they changed me to a specialized formula rather than breast milk. Then I was under wieght for a baby for a long time I did not grow sufficiently and was under the percentile for infant and toddler growth. The doctor still stuck to his guns "all babies grow at different rates" blah blah blah.... adding this to my medical history!


-------------------------

-------------------------
**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

Sr. Member
****

Gender: Female
Posts: 263


I didn't know where to put this... but here is an Update so far.

two weeks ago I was also diagnosed with severe sleep apnea. My right eye kept getting red and inflammed so I went to an opthalmologist whom I was not super impressed by. He told me I have "dry eyes" and every thing else looks ok. He wanted me to especially use an eye drop because the CPAP machine for my sleep apnea could cause dry eyes appearently everything else in the eyes looks fine, he dialated the eyes and took pictures or them etc. They look fine...  Confused despite the wierd bug looking spots I keep seeing and the constant wave like headacheless migraine stuff.. only thing about the headacheless migraine theory is they say that the "waves" typically last 20 minutes.. well my waves last all day every single day. So I dont know... whatever...

I then went to a top nuerologist in seattle she is at the Swedish hospital, this would be my second nuerologist to be exact. I took my MRI films and my medical history. She had brought up mysenthia.. I think thats how you spell it but then again she said there was nothing absolute in me and my symptoms that was "jumping out at her" or that "aha! moment" damn! oh well.. I am used to that by now. What sucks is I wasted alot of time and gas to get there for her to say this to me. Thats the story of my life though.  What she was sure of is that it was not any sign of MS or ALS or parkinsons. She told me that she thinks my symptoms and etc that I am not going to "die from any of it anytime soon"  aggressive that was kind of annoying. I know I probably won't die from this.. but what about improving my quality of life? Don't doctors care about that anymore!? hmmph!
One thing she was concerned about was my glucose levels and sleep apnea. She asked me "So... why do you have blood glucose and sleep apnea?" when I said I did not know... she said "that is odd because you do not fit
the typical type for either of those. Most people with issues like that are obese.
and you clearly are not. So I am wondering if this is something with you endocrine
system." She was also concerned about the pituatary gland in the brain, problems there
often cause sleep disorders in correlation with insulin etc. Something like that. Although
she said the MR films looked normal as far as size of the gland.

I went then the next day to my GP, he sent me a referral for an endocrinologist but
those guys are busy. The soonest appt. I could get was October 15th!!! oh well I set up the
appt. In the meantime my GP has me going in on monday morning to draw blood for a battery
of endocrine tests, cortisol,inuslin, ACTH, the basic metatoblic panels, testosterone levels, etc..
there was like 5 other things on that list for the lab but I dont remember at this moment.

So thats where I am right now. I hope and pray that SOMETHING is found in that blood test.
If nothing is found with the endocrinologist I THEN go back to that neuro in Seattle to
do an EMG and an EEG for three days in which I would reside in the hospital for the duration
of that test.

Still have the colonoscopy on July 21st and then going to look into the endo option more
after I am done with all of this. Most likely will discuss this further with a gyno whom
is well taught in this area. Most likely though not till the end of this year. I spend all
my free time as it is in doctors/specialist offices, I have so many procedures and or
surgeries this year. That I am near a medical "burn out" If nothing is found after all this
I may need to take a medical break. Then possibly think about spending a week in MN at
the mayoclinic.


-------------------------

-------------------------
**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

Newbie
*

Posts: 3


I hear you I am in the same boat.. docs telling me i'm nuts and yes I have thought of telling myself i'm crazy but I know i'm not.


-------------------------
   

Jr. Member
**

Posts: 14


look into hypokalemia partial paralysis.. it occurs in individuals when potassium levels fluctuate and can happen when slightly high or slightly low and even when in the normal range,, sounds so much like me potassium ION channelopathy I diagnosed my self am about to begin medical diagnosis process through my physician and the muscular dystrophy association (specifcally andersen tawil syndrome)

katts


-------------------------
   

Sr. Member
****

Gender: Female
Posts: 263


Thought I would update this.. while I am still no closer to a diagnosis anytime too soon, I have a very dry but thorough endocrinologist that is running a lot of tests.
Tomorrow I am getting some more blood work: Thyroid antibodies, allready been tested for TSH and thyroid which was normal but I have heard many that were diagnosed with thyroid problems even with normal TSH levels etc. So the real test is for the antibodies, so theres that, then B12 levels..again. Then also Sedation. Also Glucose Tolerance test and then finally in december an Insulin tolerance test which should look more into how well or not well my pituatary is working in correlation with growth hormone, I was extremely low in IGF-1 which is in an indicator of how others things are functioning, IGF comes from the liver but insulin and growth hormone go hand in hand i guess. My FSH and LH are low, meaning I would need some help conceiving if I wanted to conceive and if I did.. no gaurentees that I woud end having a live birth. Once I get my numbers in and I can say I have these hormone deficiences could be I have Hypopituitarism,  Hypopituitarism is a condition in which the pituitary gland does not produce normal amounts of some or all of its hormones. We will see... I am hopeful but not too hopeful. i have been dissapointed alot in my journey for a diagnosis.


-------------------------

-------------------------
**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

Jr. Member
**

Posts: 40


Hello othobe  Dance

Hypopituitarism may be an idea, poor growth,poor menstruation and cardiac arryhtmies could be indicators, although there could be many other conditions producing similar symptoms.

Have you already been checked for it?

It could be an idea for myself too...

Nice greets

trancy Dance


-------------------------
   

Sr. Member
****

Gender: Female
Posts: 263


Thought Id update with whats been going on since I have not since october.  The results of my thyriod antibodies was normal, the glucose tolerance test did show hypoglycemia. I am in hopes to work on a new diet here... after the holidays. lol...  it will be a balance of good fats with proteins and very lil to no sugar and low fat and low carbs and more complex carbs etc...


So today I had my insulin tolerance test... by far the glucose tolerance test was worse. They injected me with the insulin and that was wierd made me smell bandaids... wierd...  we got my blood sugar down to 49 mg/dl  and I was shaky but I only had to feel that way for a half hour then they let me have apple juice and continued taking blood from there for 2 hours and a nurse was present at all times monitoring also my blood sugar levels so it was much more comfortable than the glucose tolerance.

I go back December 15th for the results.. i hope they are not normal.. but they is a chance they may. We shall see...


-------------------------

-------------------------
**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

Group: Administrator
VIP Member
*******

Gender: Female
Posts: 921

I Will Be Diagnosed !


How's everything going Kristin  Question any results back yet from the December tests  Question


-------------------------
   

Sr. Member
****

Gender: Female
Posts: 263


Here is my long awaited update.... well I went in to get in the insulin tolerance test results ... they were.. normal. OF COURSE they were!!! So this is where I am left at.. a diagnosis of reactive hypoglycemia and pre diabetes. So he told me for 6 months to try a very strict diet and then come back in june to possibly retest.

I have been on a low carb high protien and fiber and low fat diet for 5 weeks now. I feel pretty good in some aspects. I do have some more energy and my anxiety is pretty much gone. Anytime i feel anxiety or nausea i test my blood sugar and its usually too low. That has only happened a few times in the past 5 weeks. I am still learning the balance of things with my diet. I dont get headaches as severe and as often as I used to as I am drinking atleast 7-8 glasses of water a day now as well as taking vitamins but the headaches to still persist always in the same place.

Somethings that have been bothering me is my knees. They ache so bad at night, I take advil still for that.. I am trying to stay away from it so i have been trying aspercreme and icy hot.. that works pretty well. My knees ache though and i feel like i am a million years old. Another thing I have noticed really for a few years but more so recently is upper right qaudrant pain just below my ribs it kind of throbs and is worse when lying down. I am constantly constipated, bloated and my stools are very pale and my headaches are ALWAYS over my right eye just above it and since i have now ruled out dehydration as the culprit my doctor has ordered a HIDA scan. I am honestly scare of this.


-------------------------

-------------------------
**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

Sr. Member
****

Gender: Female
Posts: 263


continued from above post...


I dont know what to expect not only this.. but I have established a good diet for my blood sugars so i am afraid this procedure and of the CCK injection.. has anyone had this done?  I have heard the CCK can give you cramping and nausea.. and anything with nausea as a side affect freaks me out... stupid phobia! and geez add gallbladder problems to my list of symptoms.. geez  aggressive anyways any help would be great... otherwise i am doing better. Most my anxiety stuff was honestly from my blood sugars though i still have a few phobias and such otherwise i do feel better than i did prior to the diet not 100% but then again even 5% would be an improvement! 

hope everyone has had a good new year so far! I am hoping for a good 2010! maybe a diagnosis..!


-------------------------

-------------------------
**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

thoose diagnosis's seem to be playing hide and seek
Newbie
*

Gender: Female
Posts: 5


WOW, these Dr's really seem to enjoy not listening to us, and telling us that ' it really is all in your head, theres nothing wrong with you'.

Was just wondering whether you had ever had a ANA blood test, this would be a way of working out if any of your probs were as a result of your immune system attacking your body, there meant to be really effective in picking up auto-antibodies ( maybe its mine they just dont pick up)
hope things improve and you finally find someone that takes you seriously and you find a diagnosis.
x
Amber


-------------------------

-------------------------
"we are all joined together by a common hope and an uncommon bond"
   

Sr. Member
****

Gender: Female
Posts: 263


Thank you Amber... I did have an ANA test a few years ago. Was told it was normal however I never personally got to see those results and it was when I was seeing a real quack of a doctor that told me there was not way I was having blood glucose levels in the 30s and that my meter must be broken.. whatever *eye roll* So I have a new doctor since then.. i should maybe bring it up.

I have an xray scheduled too of my knees since they are quite painful.. ugh we will see.. I really am scared of the HIDA with CCK though still. I am too nervous about it all.


-------------------------

-------------------------
**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

thoose diagnosis's seem to be playing hide and seek
Newbie
*

Gender: Female
Posts: 5


Yeh it might be worth bringing it up again, all i would say is when you have it done make sure you havnt had anything that could dampen down your immune system down withing the last few weeks, because the results will be all messed up and it will just give the dr's another reason to say theres nothing wrong with you ( its what happened to me on my last ANA)
I think after a point you dont really care what the tests show, however serious or simple it is we just NEED to find something, i have always said that i dont care what it is, ill learn to live with it, but its going to be not finding out what it is that is going to do me manage.
Hope everything goes ok with the X-Ray, i know just how horrible painful knees are!


-------------------------

-------------------------
"we are all joined together by a common hope and an uncommon bond"
   
0 Members and 1 Guest are viewing this topic.
Pages:  Prev 1 [2]   Go Up


Jump to:  

Copyright 2008 - 2012 http://www.undiagnosedillness.org All rights reserved

Medical Resources  |   |  Home Care |  Ohio Sleep Center | 

 |  Best Electronic Cigarettes |  Health Center Hub |  Acai Berry |  Wheelchair Ramps | 

February 08, 2012, 06:01:22 PM
Powered by SMF 1.1.15 | SMF © 2006-2007, Simple Machines