Discussions By Condition: I cannot get a diagnosis.

Been going on too long, I can't go to school!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • December 7, 2009
  • 11:25 PM

My Symptoms:
• Dizzy when standing
• Nauseous nearly all the time
• Weak; feels like I'm strapped to something and can't move or it's hard.
• Tired always; waking up at night.
• Stomach aches/pains
• Sore throat
• Sensitive Hearing: Loud or sharp pain causing discomfort.
• Catch virus's/infections one after another
• High white blood cell count
• Need more water, but low appetite
• Can't be in sunlight for too long (Headaches, migraines, dizzier)
• Always cold but no fever.
• I've got asthma.
• I do have slight scar tissue on my Larynx.
• White spots on my Tonsils.
• Charlie Horses (Leg Cramps).


Extra:
• Not Sexually active
• Never had a boyfriend or anything like that.
• 15 years old
• Female
• 186 pounds (used to be more, but lost weight)
• On Hormone pills for the ladies monthly (symptoms before starting).
• Been treated for Acid Reflux for the last year.
• On home school/independent study.
• Anti-biotics don't work.
• Steroids don't work.
• Anti-acids don't work.

Tests:
EKG (Dec. 2008): Normal
Diabetes (regularly): Normal
Barium Swallow (Nov. 16, 2009): Normal, no acid.
Endoscopy (July, 2009): Normal with slight irritation around the lower oesophagus/intestines.
AIDS/HIV: Negative.
Cancer: Negative.
Appendicitis: Negative

Thing is why I'm asking is because I've been sick for over a year. It's originally started off with just abdominal pain and nausea. And been getting worse through out the year. Now it's getting to the point I'm catching virus's one after the other... For the last few days I'm showing symptoms of the flu. I can't have the shots because I'm sick. So I need help. I'm seeing my normal doctor, (he recently said he doesn't know what to do since the Swallow Study showed it isn't my stomach as originally thought) a stomach specialist, and a EMT specialist for my throat (He's handling everything at the moment.). Anything I should do or help? I can't take aspirin or anything with aspirin in it...and most medications aren't working. Or is there anything I should mention?

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7 Replies:

  • 1--High white blood cell count can indicate an infection . with all those symptoms go back to the first problem you had and what did the doctor first prescribed--------for this problem -------read side effects. you dont mentsion the name of the medication --- look it up if you do not have the leaflet in the box just to give you an idea .of the Steroids you speak of . Severe allergic reactions (rash; hives; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry stools; changes in menstrual periods; chest pain; eye pain or increased pressure in the eye; fever, chills, or sore throat; joint or bone pain; mood or mental changes (eg, depression); muscle pain or weakness; seizures; severe or persistent nausea or vomiting; stomach pain or bloating; swelling of feet or legs; unusual weight gain or loss; vision changes; vomiting material that looks like coffee grounds.
    charmaine petzer 176 Replies
    • December 9, 2009
    • 07:42 AM
    • 0
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  • Look into the possibility of Postural Orthostatic Tachycardia Syndrome. It can affect teenagers, and causes many of the symptoms you are mentioning.
    Anonymous 42789 Replies
    • February 18, 2010
    • 07:49 AM
    • 0
    Flag this Response
  • my symptoms: • dizzy when standing• nauseous nearly all the time• weak; feels like i'm strapped to something and can't move or it's hard.• tired always; waking up at night.• stomach aches/pains• sore throat• sensitive hearing: Loud or sharp pain causing discomfort.• catch virus's/infections one after another• high white blood cell count• need more water, but low appetite• can't be in sunlight for too long (headaches, migraines, dizzier)• always cold but no fever. • i've got asthma. • i do have slight scar tissue on my larynx.• white spots on my tonsils.• charlie horses (leg cramps). Extra:• not sexually active• never had a boyfriend or anything like that.• 15 years old• female• 186 pounds (used to be more, but lost weight)• on hormone pills for the ladies monthly (symptoms before starting). • been treated for acid reflux for the last year. • on home school/independent study. • anti-biotics don't work.• steroids don't work.• anti-acids don't work. Tests:Ekg (dec. 2008): Normaldiabetes (regularly): Normalbarium swallow (nov. 16, 2009): Normal, no acid.Endoscopy (july, 2009): Normal with slight irritation around the lower oesophagus/intestines.Aids/hiv: Negative.Cancer: Negative.Appendicitis: Negativething is why i'm asking is because i've been sick for over a year. It's originally started off with just abdominal pain and nausea. And been getting worse through out the year. Now it's getting to the point i'm catching virus's one after the other... For the last few days i'm showing symptoms of the flu. I can't have the shots because i'm sick. So i need help. I'm seeing my normal doctor, (he recently said he doesn't know what to do since the swallow study showed it isn't my stomach as originally thought) a stomach specialist, and a emt specialist for my throat (he's handling everything at the moment.). Anything i should do or help? I can't take aspirin or anything with aspirin in it...and most medications aren't working. Or is there anything i should mention?i wonder why a doctor would put a 15 year old on hormones.....those can mess you up so bad it's not even funny ....stop taking those hormone pills. Make sure you eat right. Try to move even when you dont want to, and try not to sleep more than 9 hours or so at a time. Maintain a routine sleep schedule. Dont drink caffeine too much....don't drink it at all 6 hours before going to bed. Have your tonsils removed. Take 500mg vit c every day. Try eliminating dairy if these other things don't work.
    Anonymous 42789 Replies
    • February 19, 2010
    • 09:54 AM
    • 0
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  • Oh my gosh, I have almost the same exact symptoms as you and I'm home schooled now because of it as well! I'm so sick of being sick! It's terrible, and it's almost as if no one understands the kind of pain we're going through and they keep thinking its so much lesser than it is. I've done just about all the tests you have done, and I actually just got a test to see if I have a hormonal imbalance. (I'm 17 btw). I hope we find our answer! If my doctor says anything when I visit tomorrow, I will post it here! Good luck with everything!
    xochristyxo 7 Replies
    • October 25, 2010
    • 10:00 PM
    • 0
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  • My Symptoms: • Dizzy when standing• Nauseous nearly all the time• Weak; feels like I'm strapped to something and can't move or it's hard.• Tired always; waking up at night.• Stomach aches/pains• Sore throat• Sensitive Hearing: Loud or sharp pain causing discomfort.• Catch virus's/infections one after another• High white blood cell count• Need more water, but low appetite• Can't be in sunlight for too long (Headaches, migraines, dizzier)• Always cold but no fever. • I've got asthma.• I do have slight scar tissue on my Larynx.• White spots on my Tonsils. • Charlie Horses (Leg Cramps). Extra:• Not Sexually active• Never had a boyfriend or anything like that.• 15 years old• Female• 186 pounds (used to be more, but lost weight)• On Hormone pills for the ladies monthly (symptoms before starting). • Been treated for Acid Reflux for the last year. • On home school/independent study. • Anti-biotics don't work.• Steroids don't work.• Anti-acids don't work. Tests:EKG (Dec. 2008): NormalDiabetes (regularly): NormalBarium Swallow (Nov. 16, 2009): Normal, no acid.Endoscopy (July, 2009): Normal with slight irritation around the lower oesophagus/intestines.AIDS/HIV: Negative.Cancer: Negative.Appendicitis: NegativeThing is why I'm asking is because I've been sick for over a year. It's originally started off with just abdominal pain and nausea. (In 50 percent of cases, these are the first symptoms). And been getting worse through out the year. Now it's getting to the point I'm catching virus's one after the other... For the last few days I'm showing symptoms of the flu. I can't have the shots because I'm sick. So I need help. I'm seeing my normal doctor, (he recently said he doesn't know what to do since the Swallow Study showed it isn't my stomach as originally thought) a stomach specialist, and a EMT specialist for my throat (He's handling everything at the moment.). Anything I should do or help? I can't take aspirin or anything with aspirin in it...and most medications aren't working. Or is there anything I should mention?I'm curious as to which type of "steroids" you've been subject to.Have your Primary Care Physician order the following tests:Plasma cortisolPlasma ACTHACTH stimulation testCNS imaging3 hour glucose testBicarbinateAlso, a CBC should be ordered to look for the following abnormalities:Serum electrolytesLow SodiumHigh PotassiumHigh BUNLets review the symptoms of an Adrenal Insufficiency.In addition, I've taken the liberty of underlining symptoms you share.Weakness, fatigue, and orthostatic hypotension are early symptoms and signs. Adrenal insufficiency can be triggered by infection. Anorexia, nausea, vomiting, frequent/excessive thirst, and diarrhea often occur. Decreased tolerance to cold, with hypometabolism, may be noted. Dizziness and syncope may occur. Weight loss, dehydration, and hypotension are characteristic of the later stages. Enhanced hearing is also a symptom, as is an elevated WBC. You are probably getting leg cramps due to an electrolyte imbalance, which is also a symptom.Finally, an adrenal insufficiency would explain your hormone imbalance.I hope you feel better.
    keanhe 86 Replies
    • October 26, 2010
    • 10:08 AM
    • 0
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  • It sounds like what I went through all this year and most of last. I was told everytjing was stress. And later diagnosed with fybromialgia, it wasn't a misdiagnoses but it wasn't what I had either. I began having what we called seizures (same as a cousin of mine) and I found out that I have something called Perasympathetic Dominate Dysotonomia (PDD).And my "seizures" were actually cardiac events. my sysmptoms before treatments were:- Lower abdomonal pain- Always cold but never a fever- nausia, vomiting- migrains and head aches- borderline low blood pressure while sitting. Then appon standing my bp would drop significantly (usually resulting in a cardiac event.)- Blured vision- constipation, diahrea- simi purple/blue skin- RLS (restless leg syndrome)- numbing or tingling in my finger tips-Muscle pain and weaknessWhen I was diagnosed with Fybromialgia at the end of last summer these were the changes in my symptoms:- My lower abdomanal pain decreaced- Muscle pain and weakness decreacedthat was it. But at the time that was a huge deal because that pain caused a lot of issues with my life.Soon after being treated for fybromialgia (with lexapro, i do not recomend, and a work out regament) My GI dr. wanted to see if I really had Fybromialgia and wanted to check my colon. Just as a precousionary meassure he did an upper GI too. Surprisingly my colon was perfect, but my asophogous was lined with a yeast infection (later diagnossed as CMCC, Chronic Mucolaul Cantainious Candididous. bc the infection would not go away unless I was on agressive antibiotics.) Then my symptoms changed:- I began having seizures (which we now know to be cardiac events)- my Migrains became a weekly event- I began seeing colored spots- I had a very big personality adjustment.all this was not related to my fybromialgia or CMCC. These new symptoms dominated my life at my new private school and with my friends. And all these things led me to see Dr. Ianssmith, an electrophysiologist in Memphis TN. this is what we learned- my pale skin, light eyes, light hair is a symptom- my turning purple when I got the slightest bit cold is a symtom- Fybromialgia is a symptom- my slightly unusuall bp is a symptom- My heavy periods, that no birth control could treat, is a symptomAll those symtoms lead up to my cardiac events which are Basically fainting spells. Ianssmith diagnossed me with PDD.PDD in a nut shell:The perasympathetic nervuos system dominates the sympethetic nervous system and central nervous system. The Perasympathetic nervous system controld the fight or/and flight reaction causing little upsets to my central and sympathetic nervous system to make me freak out hyperventalate and faint.Symtoms of PDD:- Light eyes- Pale skin- ligh thair- fybromialgia- cardiac events- heavy periods(althuogh some guys can have this form of dysotonomia. but it is very rare.)- Low blood volume- accute asthma - muscle twitches*****FOR OTHER PEOPLE THE SYMPTOMS CAN OR WILL BE DIFFERENT*****-Dysotonomia is a general term, many doctors will diagnos it saying you have an autonomic difunction. But there is a wide range of Dysotonomia from simple dizyness to Parkinsens diseas. So I am not informing you about Dysotonomia but about "Perasympathetic Dominate Dysotonomia"
    Anonymous 42789 Replies Flag this Response
  • ME/CFS is a common cause of long term school absenteeism in children/teens and anyone who has a huge variety symptoms such as above should be considering this. I think the original poster has ME/CFS with Postural Othostatic Tachycardia Syndrome aka POTS (very common with ME/CFS) coming in too. POTS goes with autonomic nervous system dysfuctions, over reactive nervous system to things. It is a type of dysautonomia. http://wwcoco.com/cfids/bernesx.html (good ME/CFS symptom list)http://www.dinet.org/ for info on POTS (note.. teen years are a common age to get POTS)
    taniaaust1 2267 Replies Flag this Response
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