Discussions By Condition: I cannot get a diagnosis.

I need help -Long

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: sleepingbeauty
  • March 25, 2009
  • 04:47 AM

I posted about a year ago and I'm still sick and getting sicker. I don't know what to do. I will try and post most of my symptoms. The major symptom is that I am tired all the time. I sleep about 8 hours a night and then I have 1 or 2 - 3 hour naps. I am constantly tired.

List of current symptoms:

- Tired/Fatigued
- my eyes are swollen and have a rash all over them...they sting
- bad reactions to (intolerance) gluten, soy, dairy and other foods
- overweight
- hair on chin (I'm female)
- freezing all the time (but it's winter and I live in Canada lol)
- extremely tired (wiped for days) after exercise
- on an extremely controlled low calorie diet ...2 months gained 1 lb
- upper back ache (this just started recently--could be a virus)
- monthly urine infections
- diarrhea every day of my life
- use the wrong word constantly...we will be going out and I will ask my hubby to go start the barbecue (instead of car)...it's like I substitute one noun for another...but only happens when I'm talking
- insomnia (can't get to sleep at night until 1:00am) but need naps
- need coffee to be alert enough...I've went 1 year without coffee...I was miserable and the symptoms didn't change
- irritable
- hot flashes
- acne (actually cysts...all over my body)
- heavy menstration

Things I have been diagnosed with (Nothing concrete...no blood test that says you have this)

-IBS
-PCOS (just from symptoms...only one cyst on my ovaries)
-Bipolar Disorder (I was diagnosed with this 10 years ago and 2 years ago I went on a strict diet and haven't had another episode) I am now off those drugs (mood symptom free)
-Chronic Fatigue
-Gastric Reflux (never had heartburn in my life)


Things that I have been tested for:

- Blood tests
all normal
TSH is normal (1.08-2.27)
I have all the tests she did so if you have an idea I can check if I have been tested for it
-Sleep study. All normal. Have had 2 and one daytime...I sleep well
-Urine cultures
when I don't have a urine infection I always have leukocytes (??)
-creatinine seems to go above 100 umol/L regularily (have no idea what this is)
-eGFR is sometimes high (54, 59, 54)
-chloride is 111
-I've had a cat scan ...normal (no cats)
-abdominal ultrasound ... normal but have an enlarged spleen (in 2 tests)
-pelvic ultrasound... normal 2.6 cm ovarian simple cyst likely functional and smaller follicular cysts ... 2 cm posterior small fibroid
-celiac panel IgA 5, IgG 9, Transglut... IgA 6

Past procedures:
-gall bladder
-tonsillectomy

Family History
-hypothyroidism
-rheumatoid arthritis
-ankylosing spondylitis
-many mental disorders
-disease where your skin is all red and flakes (most people get it on their scalps) my bro has it everywhere

Sorry so long...I'm hoping that someone will actually take a look at it.

Blessings
Connie
-

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19 Replies:

  • I really need help...if someone could take the time to look.Connie
    sleepingbeauty 22 Replies Flag this Response
  • Thank you so much for your post. I had investigated lyme disease at one point and wasn't convinced that I had found the beast. I have filled in the symptom checklist. The website said that 20 is a high risk. I have 16 but some of the problems presented as 2 checkmarks...(cystitis and recurrent infections, diarrhea and stomach pain (and I've had these since I was 5 years old), Chronic Fatigue and Extreme Fatigue.I have had the standard test and it was negative and I know that it isn't a perfect test. Y'know it just doesn't feel right. I'm not an outdoorsy kind of girl (ever) and I don't live in an endemic region. I live in an area that has very few cases. When I first got sick 10 years ago, I was working 80 hours a week and then coming home and being mommy. No outdoor life whatsoever. My idea of camping is a 3 star hotel. I live in suburbia. I don't go for walks in the woods. The only time that I visited a place that was endemic for lyme, I was stuck in a conference all day and my only non-conference time was spent at a roller coaster park. If you could catch it at a local mall I would be jumping up and down and asking for the western blot. But I don't think this is my cause.As for the wifi/computer issues. Any chance you're living close to cell phone tower or wi-fi signals?Umm, who doesn't. We have wifi in the house. There are no cell phone towers anywhere near me, right now. There were some about 5 miles away at the old house. I am completely unfamiliar with this disease. How do you diagnose it, how do you treat it, how is it identifyible? I did go into the back country of Quebec last year (no electronics of any sort) it was for a retreat and it was the first time I experienced mother nature...ewwww. Anyway I got much worse on my trip and we had to come home early ...maybe I am sensitive to mosquitos, and wildlife??? lolConnie
    sleepingbeauty 22 Replies Flag this Response
  • Hi. So sad to hear about your misery. The question with alla your symptoms is wheethers its a single or multiple diagnosis. In my country your eGRF isn´t high but Low (should not be low) and I´m wondering about your creatinine. How long since it was last taken. Has it been any progression in the creatinine (has it become higher the last tests?)and eGFR the last year(s?)(has it become lower?)Also wondering about your acne. Has it become worse the last years (when did it start) has it changed character?Have you had microalbumineria/proteinuria or had it checked? Are your close relatives/parents still alive, have their diseases changed character over the years. / Annica
    Annica 13 Replies Flag this Response
  • Here is the progression on the tests I have for creatnine and eGFR2005/03/21 Creatinine:105 eGFR:2007/07/26 Creatinine:111 eGFR:542007/08/09 Creatinine:106 eGFR:542007/08/17 Creatinine:97 eGFR:592007/09/19 Creatinine:81 eGFR:73 (this is about the time that I went off my drugs)No tests since then...was sent for abdominal ultrasound and cleared of kidney problems...My acne is wierd. I have started having lumps and bumps all over the place and they just don't go away. They aren't red and angry (except the first couple of days). It used to be that my acne was mostly on my face and it would be so bad that on some days I would have an eye swollen shut with a cyst. Now it is not so painful and not usually on my face and the lump just never goes away.BlessingsConnie
    sleepingbeauty 22 Replies Flag this Response
  • umm im no doctor but have a few of your issues myself so will comment. You do have many symptoms of PCOS but Im kind of surprised you have been given that diagnoses if a blood test hasnt confirmed hormonal abnormalities and you dont have the classical PCOS "ring of pearl" effect mentioned on your ultrasound, thou it did mention some cysts on your ultrasound but from what it said i cant tell if that's seen as normal or not. In my own ultrasound they mentioned that it had the appearance of PCOS due to the formulation of the cysts. If you havent had your hormone levels tested, you need to get that tested to see if you have abnormalities there........... It appears that you were wrongly given a bipolar diagnoses due to food intollerances. Food intollerances are known to be able to cause mood issues. The diarrhea could be IBS or due to food intollerances. You may have more intollerances you are unaware of. Not being a doctor I cant read your celiac disease panel to know if that's a postive or not.. but what i can say is that one can get a false negative on celiac disease blood tests if one has been avoiding gluten before the test was done. So i hope you werent on a restricted diet right before your test or the test result may be a false one.............. extremely tired (wiped for days) after exercise You say you have had a diagnoses of "fatigue". I myself would think you probably have "Chronic fatigue Syndrome" from that symptom and your others. Chronic fatigue syndrome isnt fatigue. http://wwcoco.com/cfids/bernesx.html You'd best seek out someone who specialises in chronic fatigue syndrome. (all your symptoms can be part of CFS).
    taniaaust1 2267 Replies Flag this Response
  • I got a new diagnosis tacked onto my pile...The doctor told me I had metabolic syndrome. He said that my weight problems were genetic because of some factors that he identified. He suggested a couple of programs...optifast with counseling and support or surgery.Just realized that the optifast is out because of the milk intolerance I have...unless I can find the money to do naet and the optifast program...not likely.BlessingsConnie
    sleepingbeauty 22 Replies Flag this Response
  • Didn't I mention that I have been diagnosed with Chronic Fatigue Syndrome...well it's in the pile. I wasn't aware that there was a treatment for Chronic Fatigue. I thought there were treatments for the symptoms but not for the fatigue one which is the one I would be interested in fixing. I have a lot of syndromes that have been diagnosed based on what I am experiencing. As far as PCOS goes, from what I understand you can be diagnosed with PCOS based on the hirsuitism (which I have), hair loss (which I have), acne and weight problems (which I have both) ...I am not treating it because the risk of the medication is way worse than the benefit. I am not trying to get pregnant and plucking my chin every night is a way to wind down from the day!! lol.Oh and celiac's, don't know if I have it don't care if I get the actual diagnosis. I stay away from gluten and I don't get sores in my mouth and my bipolar stays away. I did have the test, went back on gluten for 2 weeks which is what the doctor told me. The only change in my life I would get if I got the celiac diagnosis is that I would be able to write off my food on my taxes (Canada)BlessingsConnie
    sleepingbeauty 22 Replies Flag this Response
  • I got a new diagnosis tacked onto my pile... The doctor told me I had metabolic syndrome. He said that my weight problems were genetic because of some factors that he identified. He suggested a couple of programs...optifast with counseling and support or surgery. Just realized that the optifast is out because of the milk intolerance I have...unless I can find the money to do naet and the optifast program...not likely. BlessingsConnie Im aware of metabolic syndrome and are curious how he came to come to the conclusion that your weight issues are that and not the other issues which have been mentioned?? eg PCOS does cause one to be overweight ... and with CFS, weight changes including weight gain is one of the symptoms. Have you got high BP, Insulin resistance or diabetes or other metabolic syndrome symptoms???? You didnt mention having any other of these things so im curious about your doctors diagnoses and what in fact he's based it on. The American Heart Association and the National Heart, Lung, and Blood Institute recommend that the metabolic syndrome be identified as the presence of three or more of these components:Elevated waist circumference:Men — Equal to or greater than 40 inches (102 cm)Women — Equal to or greater than 35 inches (88 cm)Elevated triglycerides:Equal to or greater than 150 mg/dLReduced HDL (“good”) cholesterol:Men — Less than 40 mg/dLWomen — Less than 50 mg/dLElevated blood pressure:Equal to or greater than 130/85 mm HgElevated fasting glucose:Equal to or greater than 100 mg/dL
    taniaaust1 2267 Replies Flag this Response
  • Didn't I mention that I have been diagnosed with Chronic Fatigue Syndrome...well it's in the pile. You mentioned you had chronic fatigue not chronic fatigue syndrome. They are two completely separate things with "chronic fatigue" being a "symptom" of many different illnesses from depression to MS and cancer and everything in between, where as "chronic fatigue syndrome" is an actual disease, a proper illness rather than just one symptom. yes there are treatments for the symptoms of chronic fatigue syndrome but there ARE also treatments for the things this disease does to the body too. eg things to improve mitochrondrial function etc. I myself are on twice weekly B12 injections for it, not cause im B12 deficient but due to the role the NO/NOO cycle plays in CFS. Many of us find these helpful. If you have CFS, it's best finding someone who specialises in it so can offer you treatments to trial or advice to help stop further damage from occuring. As far as energy levels go with this illness, my own energy levels are heaps better with it since I've had the POTS it has caused, and the food intollerance issue it also caused dealt with. I feel energetic most of the time due to having my pacing right.(i still get very ill with many symptoms thou after i do things but can stay well be pacing right) the only thing im not aware which can be treated is the post exertional whole symptom complex (which is a lot more than just post exertional tiredness). I suggest to treat the symptoms but also try getting the CFS treated too. (eg lessening the overload on the body by correcting various things eg the triggers going on within eg could be reactivating viruses, chemical overload or endocrine issues or those things the CFS is caused). There are many different CFS treatment plans being used by CFS world famous experts and being followed up on by other CFS specialists. There IS now also a test out now which can show up what exactly is going wrong in the mitochronidia in CFS patients, where as then treatments can be based on that underlaying issue we have, what kind of fault we have there. This test is said to be going to be possibly publically available within the next 2 yrs and will possibly be used then as a diagnostic test for this illness. best luck
    taniaaust1 2267 Replies Flag this Response
  • I posted about a year ago and I'm still sick and getting sicker. I don't know what to do. I will try and post most of my symptoms. The major symptom is that I am tired all the time. I sleep about 8 hours a night and then I have 1 or 2 - 3 hour naps. I am constantly tired.List of current symptoms:- Tired/Fatigued- my eyes are swollen and have a rash all over them...they sting- bad reactions to (intolerance) gluten, soy, dairy and other foods- overweight- hair on chin (I'm female)- freezing all the time (but it's winter and I live in Canada lol)- extremely tired (wiped for days) after exercise- on an extremely controlled low calorie diet ...2 months gained 1 lb- upper back ache (this just started recently--could be a virus)- monthly urine infections- diarrhea every day of my life- use the wrong word constantly...we will be going out and I will ask my hubby to go start the barbecue (instead of car)...it's like I substitute one noun for another...but only happens when I'm talking- insomnia (can't get to sleep at night until 1:00am) but need naps- need coffee to be alert enough...I've went 1 year without coffee...I was miserable and the symptoms didn't change- irritable- hot flashes- acne (actually cysts...all over my body)- heavy menstrationThings I have been diagnosed with (Nothing concrete...no blood test that says you have this)-IBS-PCOS (just from symptoms...only one cyst on my ovaries)-Bipolar Disorder (I was diagnosed with this 10 years ago and 2 years ago I went on a strict diet and haven't had another episode) I am now off those drugs (mood symptom free)-Chronic Fatigue-Gastric Reflux (never had heartburn in my life)Things that I have been tested for:- Blood tests all normal TSH is normal (1.08-2.27)I have all the tests she did so if you have an idea I can check if I have been tested for it-Sleep study. All normal. Have had 2 and one daytime...I sleep well-Urine cultureswhen I don't have a urine infection I always have leukocytes (??)-creatinine seems to go above 100 umol/L regularily (have no idea what this is)-eGFR is sometimes high (54, 59, 54)-chloride is 111-I've had a cat scan ...normal (no cats)-abdominal ultrasound ... normal but have an enlarged spleen (in 2 tests)-pelvic ultrasound... normal 2.6 cm ovarian simple cyst likely functional and smaller follicular cysts ... 2 cm posterior small fibroid-celiac panel IgA 5, IgG 9, Transglut... IgA 6Past procedures:-gall bladder-tonsillectomyFamily History-hypothyroidism-rheumatoid arthritis-ankylosing spondylitis-many mental disorders-disease where your skin is all red and flakes (most people get it on their scalps) my bro has it everywhereSorry so long...I'm hoping that someone will actually take a look at it.BlessingsConnie-im a medical student..from the history of the patient..i can say that maybe the patient is too conscious and anxiety..it could maybe some psychological effect.about too tired, maybe because you have a heavy menstrual cycle at the time.for urine infection every month, its not an unusual thing.maybe you must check on your hygiene level.4 rashes we can say that you have very serious allergy to some food.for enlarge spleen usually because of allergy.hypersensitivity reaction.however..from the past histories i can say that its not a serious symptoms.maybe you have a very serious disease that is not really obvious to clinical symptoms..so how about writing a diary and take any notes or unusual changes of ur body..
    Anonymous 42789 Replies Flag this Response
  • The American Heart Association and the National Heart, Lung, and Blood Institute recommend that the metabolic syndrome be identified as the presence of three or more of these components:Elevated waist circumference:Men — Equal to or greater than 40 inches (102 cm)Women — Equal to or greater than 35 inches (88 cm)Elevated triglycerides:Equal to or greater than 150 mg/dLReduced HDL (“good”) cholesterol:Men — Less than 40 mg/dLWomen — Less than 50 mg/dLElevated blood pressure:Equal to or greater than 130/85 mm HgElevated fasting glucose:Equal to or greater than 100 mg/dLAs of my latest blood test I have the green ones from above. My good cholesterol is still in a good range and my glucose is at 5.6 (high normal) what ever that translates to.BlessingsConnie
    sleepingbeauty 22 Replies Flag this Response
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  • You mentioned you had chronic fatigue not chronic fatigue syndrome. They are two completely separate things with "chronic fatigue" being a "symptom" of many different illnesses from depression to MS and cancer and everything in between, where as "chronic fatigue syndrome" is an actual disease, a proper illness rather than just one symptom. Sorry, I didn't know there was a difference. I was diagnosed with Chronic Fatigue based on the fact that I fit the criteria...Dr mentioned that there was a mitochondrial component. He told me to go on a vegan diet...when I did I got very much sicker. I haven't been back because frankly I have no idea which syndrome to concentrate on. yes there are treatments for the symptoms of chronic fatigue syndrome but there ARE also treatments for the things this disease does to the body too. eg things to improve mitochrondrial function etc.All I was given was Nystatin and told to go vegan. I started the vegan thing first and got very depressed. I called the doc and he told me that it was the Nystatin herx effect and when I called back and said I hadn't started it he never returned my call. I went off of the vegan diet and the depression has gone away. If there is a treatment for the fatigue I would be interested in finding out more. I myself are on twice weekly B12 injections for it, not cause im B12 deficient but due to the role the NO/NOO cycle plays in CFS. Many of us find these helpful. I took B12 sub-lingually while I was depressed from the vegan diet. It gave me a boost for a bit. When I take it now I notice no difference. If you have CFS, it's best finding someone who specialises in it so can offer you treatments to trial or advice to help stop further damage from occuring.So you think this is the syndrome I should concentrate on? As far as energy levels go with this illness, my own energy levels are heaps better with it since I've had the POTS it has caused, and the food intollerance issue it also caused dealt with. I feel energetic most of the time due to having my pacing right.(i still get very ill with many symptoms thou after i do things but can stay well be pacing right)POTS? Plain Old Telephone System??? Sorry I'm an engineer and that is what POTS means to me. I would love to get a boost in energy that doesn't involve stimulants. the only thing im not aware which can be treated is the post exertional whole symptom complex (which is a lot more than just post exertional tiredness).Sorry you lost me. There is a another syndrome revolved around getting tired after exercise??? Knowing my luck I probably have that one too. I am not a swearing woman but man I am frustrated. I suggest to treat the symptoms but also try getting the CFS treated too. (eg lessening the overload on the body by correcting various things eg the triggers going on within eg could be reactivating viruses, chemical overload or endocrine issues or those things the CFS is caused).What is the treatment for CFS? I am not sensitive to scents or chemicals...in fact I rarely notice them or are affected by things that affect most people. There are many different CFS treatment plans being used by CFS world famous experts and being followed up on by other CFS specialists. There IS now also a test out now which can show up what exactly is going wrong in the mitochronidia in CFS patients, where as then treatments can be based on that underlaying issue we have, what kind of fault we have there. This test is said to be going to be possibly publically available within the next 2 yrs and will possibly be used then as a diagnostic test for this illness. best luckI would welcome a black and white diagnosis as opposed to a diagnosis that involves me having xx or more of the following symptoms...BlessingsConnie
    sleepingbeauty 22 Replies Flag this Response
  • im a medical student..from the history of the patient..i can say that maybe the patient is too conscious and anxiety..it could maybe some psychological effect.about too tired, maybe because you have a heavy menstrual cycle at the time.for urine infection every month, its not an unusual thing.maybe you must check on your hygiene level.4 rashes we can say that you have very serious allergy to some food.for enlarge spleen usually because of allergy.hypersensitivity reaction.however..from the past histories i can say that its not a serious symptoms.maybe you have a very serious disease that is not really obvious to clinical symptoms..so how about writing a diary and take any notes or unusual changes of ur body..Sorry I missed your response...I'm trying to understand the "too conscious and anxiety"...is this code for hypochondriac. I've considered it...I am intensely logical and I know the mind can do all sorts of fun stuff. I let other people tell me about symptoms they see in me. It is kind of a way that I protected my family during the bipolar years. I could not depend on my own mind to see the symptoms so I had to rely on others to give me feedback. So most of my "symptoms" are given to me by others. I do not research anything until the doctor gives me a diagnosis. So no, I am not constantly worrying about my symptoms...it is just that my world is so small that I am looking to get better.There was a period of 3 years that I did not get a period. During those years I was just as fatigued.Urine infections probably come from my IBS. I have accidents if I am not within 30 feet of a washroom (I hope you are understanding what I am saying)...that causes contamination and possibly the infections...it is not that I have a hygene problem.I have had the allergy test where they stick you with a bunch of substances and see if you react. I did not react to any of the foods that cause the IBS and the bipolar and the eye rash. These foods have been tested by myself. If I ingest wheat today tomorrow I will have a canker sore and the bathroom will be so stinky. If I eat yeast today, tomorrow I will have a rash around my eyes. If I eat soy today I will have diarrhea for a couple of days. If I eat milk products today I feel a little nauseous. If I eat any of these for enough days in a row I will show symptoms of bipolar.I will think about maintaining a diary. I think that might help. But it would be a lot of work...Thank you so much for your thoughts,Blessings,Connie
    sleepingbeauty 22 Replies Flag this Response
  • Well, I am replying to your thread because I just posted a thread of my own and you worded things a lot easier-to-read than I did. Aside from the chin hairs and diarreah, I'm pretty much right there with ya. I have been diagnosed with PCOS and so has my younger sister, but no tests were ever done for that. Also, I was (I believe) incorrectly diagnosed with diabetes, as my blood sugars are VERY RARELY above normal range and my fasting blood sugar test was completely normal. The utter complete fatigue is what gets me so bad. I really have a fear of it now. I am on a CRAZY schedule of sleep times. It depends on the day I guess whether I get 10 hours in one day or 18 hours. (spaced out through the day and night) I have also started to say the wrong word or just say things backwards. Anyway, I want to write more, but surprisingly, I literally exhausted at this point and am about to lay down again. (been up about 4 hours.) I hope that someone out there knows what's going on and can give you some advice. if they do, please feel free to email me at rachelsworld88@hotmail.com- or if you just want to have someone to talk to about this. anyway- i hope the best for the both of us!
    amijustcrazy 14 Replies Flag this Response
  • AmIjustcrazy:If you are crazy, I am there with ya!!!BLessingsConnie
    sleepingbeauty 22 Replies Flag this Response
  • Sounds like you most definitely have Chronic Fatigue Syndrome. I had most of the same symptoms and it took 4 years to get disgnosed. 6 months after that I was diagnosed with Sjogren's Syndrome, which the primary diagnosis, and CFS is secondary. Have them check you for EBV. Seems most people with CFS have chronic Epstein Barr, or mono. If you've had mono anytime in your life, it can come back chronic, which is one of the suspected causes of CFS. I never even knew of a time I had mono prior to the CFS diagnosis. Go to www.cdc.gov/cfs and read everything they have on it.I am a RN, and I recommend anyone having problems getting diagnosed to go to a holistic DO. I went to a variety of 13 MD's who specialize in one thing or another & could not diagnose me. It wasn't until I went to a holistic DO that I started getting diagnosed. They run many different tests that MD's don't. Hope this helps!
    AngilT 13 Replies Flag this Response
  • I didn't see an epstein barr blood test on my medical reports. What would I look for. What happens if I am positive for epstein barr? Are there any treatments? Is it the same as CFS, treat some of the symptoms but none of the underlying problems? I am unaware of any treatment of fatigue, which is palatable...If there is a treatment for Epstein Barr that will improve my fatigue without causing my life to get worse...I am all for it.BlessingsConnie
    sleepingbeauty 22 Replies Flag this Response
  • Epstein Barr (mono) tests actually have 4 parts to them. It can tell you if you are acutely sick (1st time with it), have the virus, but are not currently active with it, or have a reactivation. There is no cure, and it can become chronic, which is one of the believed causes of Chronic Fatigue Syndrome. Don't just let the dr. do a throat swab office test. You need to have the EBV blood test.Most docs will tell you to rest, since EBV is a virus, and they say to just wait it out. I was treated for 8 months last year with antiviral IV's, Valtrex, supplement's, and additional IV's to boost my immune system.All I can say right now is it's much easier to deal with any illness when you know what it is. At least then you can move forward with whatever the treatment may be, even if that's just controlling the symptoms. Not knowing for me was much worse.
    AngilT 13 Replies Flag this Response
  • Thanks AngilT.I actually am at a point where I have so many diagnosis (most of which would explain most of my symptoms), another one with no cure really doesn't interest me. I am not interested in racking up more syndromes that have no treatment. I have been lax in following up on treatments on all my syndromes, because the only problem that I cannot work around is the fatigue, and the only fix for that I've seen is vitamin shots and uppers.BlessingsConnie
    sleepingbeauty 22 Replies Flag this Response
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