Discussions By Condition: I cannot get a diagnosis.

16 years old doctors have no idea can you help

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: jpullizzi
  • December 1, 2008
  • 09:37 AM

hi im 16 and this started about 2 years ago ive been to many doctors and have had many tests can anyone offer any ideas.

symtoms
unrefreshing sleep

stiff muscles

muscle fatigue

lack of appetite i eat maybe 1 meal a day

felling light headed upon standing

i often see stars

occasional hallucinations mostly at night

occasional double vision

cognitive impairment

hands and feet are always freezing cold and pale while the rest of my body feels lik im burning up

excessive sweating

constant fatigue

memory loss

brain fog

joint stiffness

and sensations in my limbs

shortness of breath

anxiety

light sensitivity

IBS

easily bruised

balance problems

tests
MRI

extensive blood work (thyroid cheeked multiple times)

2 EEGs

sleep study

the only finding was high co2 and low chloride

medications
adderall 40mg(i do not had adhd used to keep me awake)

provigil 600mg

xanax .5mg

depikote 125mg(to help with sudden fits of rage)

i take this every mourning and it barely takes the edge off very little help

does anyone have an idea i need help please

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16 Replies:

  • Have you seen a rheunatologist? Several of the symptoms you are listing sould autoimmune in nature. T
    msnova74 20 Replies
    • December 1, 2008
    • 05:25 PM
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  • Here is a list of overdose symptoms for the drug adderal: Seek emergency medical attention if you think you have used too much of this medicine. An overdose of Adderall can be fatal. Overdose symptoms may include restlessness, tremor, muscle twitches, rapid breathing, confusion, hallucinations, panic, aggressiveness, unexplained muscle pain or tenderness, muscle weakness, fever or flu symptoms, and dark colored urine. These symptoms may be followed by depression and tiredness. Other overdose symptoms include nausea, vomiting, diarrhea, stomach pain, uneven heartbeats, feeling light-headed, fainting, seizure (convulsions), or coma. And here are side effects from Provigil:Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using Provigil and call your doctor at once if you have any of these serious side effects: fever, sore throat, headache, and vomiting with a severe blistering, peeling, and red skin rash;bruising, severe tingling, numbness, pain, muscle weakness;easy bruising or bleeding;white patches or sores inside your mouth or on your lips;hallucinations, unusual thoughts or behavior;depression, anxiety; orchest pain, uneven heart beats.I assume you are taking these drugs for narcolepsy? If not then for what and for how long? Please do a thorough research of your meds you are taking on www.drugs.com or www.rxlist.com. Every one of your symptoms sounds to me like a DIRECT side effect of the medications you are taking. Please print out the info from these websites and give to your parents and doctor. All drugs have side effects, some are severe. Doctors nearly always dismiss this! Please just look into this.Best wishesDOM
    acuann 3080 Replies
    • December 1, 2008
    • 05:29 PM
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  • its not my pills because i had all of the symptoms before i was put on them. i do not have narcolepsy to my knowledge the pills are used to keep me awake and to help me do my work.
    jpullizzi 3 Replies
    • December 1, 2008
    • 07:58 PM
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  • its not my pills because i had all of the symptoms before i was put on them. i do not have narcolepsy to my knowledge the pills are used to keep me awake and to help me do my work. I'm sorry, but you are taking BOTH adderall AND provigil to just "keep you awake"? Do you have sleep apnea? These are very strong drugs! Please elaborate. When were you put on your meds? And what were the first symptoms you experienced? Where do you live and are you male or female? I find this interesting because you are seriously showing ALL of the side effects listed for the meds you are taking. Best wishesDOM
    acuann 3080 Replies
    • December 1, 2008
    • 09:29 PM
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  • acuann was right. Nobody can forsee what will happen when you get all these drugs together!Let me write them down once more: Adderall, Provigil, Xanax, Depikote. One of your diseases is polypharmacy.Make a try to reduce a little one of them each time and see what happens.
    tsoukase 18 Replies
    • December 1, 2008
    • 11:27 PM
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  • Sounds like chronic fatigue syndrome. There's no test for it. No FDA approved treatments either. If you have the symptoms and other causes are ruled it, a doctor can diagnose you with it. It's probably caused by a virus or bacteria but no one really knows.Lyme disease is another possibility. You would need a test from IgeneX lab because the typical test used to diagnose it is inaccurate (often falsely negative in someone who has Lyme).IBS and poor appetite can be easily cured with high doses of probiotics. Look for probiotics that have 30 billion CFU or higher per serving. Probiotics may help with shortness of breath and lightheadedness also.Although not related to your symptoms, I'm curious if you have symptoms of Asperger's syndrome because I'm studying a possible connection between these two conditions. Asperger's is a label used to describe people who have certain problems with social interaction such as difficulty making friends, dating, and trouble understanding facial expressions and body language. People with Asperger's often don't quite fit in and seem a little quirky.
    Anonymous 42789 Replies
    • December 2, 2008
    • 03:44 AM
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  • Hi, im 90+% sure i know what your issue is... and you are lucky in your case being a child as you may well recover from it (children have a much better recovery rate than an adult from this). Im assuming that you are not on your meds for sleep apnea and probably dont have this as i can see that many of your symptoms dont match that. I understand that you've been put on the meds to keep you going. The unrefreshing sleep.. without sleep apnea and all the other symptoms.. shows fairly clearly your issue as it's the most common presentation of it. That being chronic fatigue immunity dysfunction syndrome also called chronic fatigue syndrome or ME. People with CFIDS often develop anxiety and mood disorders too... I suggest to check out the CFIDS symptom list at based on proper studies of this illness http://wwcoco.com/cfids/bernesx.html and go to some CFIDS/CFS forums and chat to the ones there. You'll soon see that this is your issue. Your EEG results.. if you can I suggest to get hold of them and see if anything "non specific" showed up in there. Doctors often dismiss abnormal "non specific findings" as they dont know what they mean.. in CFIDS "sometimes" in that test.. an abnormal brain wave state may be noted. There ARE certain tests which are recommended in CFIDS which MAY show up issues (as no two with CFIDS present the same).. I suggest you to find a CFIDS specialist. For emotional support and to learn more (if you want to ask others with this questions) i suggest http://forum.notcrazy.net/index.php . The biggest CFIDS online site thou is http://www.prohealth.com/me-cfs/index.cfm and they post latest studies, interviews with specialists in this illness etc (and have a huge forum) on this illness. If you have CFIDS.. Your best chance of recovery is NOW.. and hence you should be taking things easier.. not pushing yourself.. napping more etc etc . With CFIDS taking meds to stay awake esp in the first couple of years with this illness.. may prevent recovery. So please please research this illness and take the necessary facts to your mother so she realises it too. CFIDS IS a very serious illness and can worsen if care isnt taken. (maybe contact the CFS/ME/CFIDS association in your country to find out more) or you can contact me via the first forum link i gave
    taniaaust1 2267 Replies
    • December 2, 2008
    • 05:37 AM
    • 0
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  • felling light headed upon standing I forgot to comment on that as that symptom may be something which can be treated. In CFIDS... most people have low BP and that will cause that symptom. Also many with CFIDS have a coexisting condition called "Postural orthostatic taccycardia".. and that can cause that symptom too. I suggest you to look this up cause it may be something which helps confirm what ive been saying (as half of those with POTS have CFIDS). Unfortunately most doctors 95% of them.. arent up to date with info on POTS and CFS/CFIDS. The centre of disease control says that 80-90% of people with CFS remain undiagnosed. (this is cause most doctors dont know enough about the illness or are misinformed due to not being up with latest info, to feel comfortable giving a diagnoses of it).
    taniaaust1 2267 Replies
    • December 2, 2008
    • 05:44 AM
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  • taniaaust1 made also an good point. Chronic fatigue syndrom fits many of your symptoms. But there are two problems:1) it is only a syndrom that has many causes and definitely not a final diagnosis2) if it is the classical CFS thats is an exclusion diagnosisSo firstly any primary disease causing fatigue must be excluded: way-of-life, drugs(you take already 4), auto-immune and chronic infections.Secondly there is no drug for general treatment, only symptomatic ones.
    tsoukase 18 Replies
    • December 2, 2008
    • 01:07 PM
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  • i appreciate all your suggestions ill look into cfs i also forgot to mention the constant drainage from my sinus and decongestants hav no effect o by the way im a guy what tests should i suggest
    jpullizzi 3 Replies
    • December 3, 2008
    • 01:19 AM
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  • i just got back from my neurologist and i was told that she cant find anything wrong with me and i should consider alternative medicine like acupuncture what do you think I should do she doesn’t seem like she’s in to big of a hurry to help me i askd her about cfs and she shot me down
    jpullizzi 3 Replies
    • December 9, 2008
    • 03:30 PM
    • 0
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  • Differential diagnosis between Lupus,Multiple Sclerosis,Chronic Fatigue Syndrome,Fybromialgia. Following tests to be done:Antinuclear Antibody-very important,DNA-Antibodies,B12 test,C-Reactive Protein,MRI,Analysis of Cerebrospinal Fluid
    Anonymous 42789 Replies
    • December 9, 2008
    • 08:01 PM
    • 0
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  • You might want to make sure that they are testing all your hormone levels including your thyroid gland. Make sure to ask the Doctor for a more comprehensive test not just a TSH (thyroid stimulating hormone). Ask for a freeT3 and free T4. Everything you describe is mostly associated with hormone imbalance. If your male it could be your testosterone.
    Anonymous 42789 Replies
    • December 10, 2008
    • 02:51 AM
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  • i just got back from my neurologist and i was told that she cant find anything wrong with me and i should consider alternative medicine like acupuncture what do you think I should do she doesn’t seem like she’s in to big of a hurry to help me i askd her about cfs and she shot me down Acupuncture rocks and can really help people who don't get answers from allopathic medicine. Find a good one by asking friends and colleagues, and go online at www.nccaom.org and www.acufinder.com Make sure the practitioner is NCCAOM certified and attended a reputable TCM graduate school. Ask if they are also NCCAOM certified in Chinese herbology as this requires the most training. I think it would be very helpful to try. Best wishesDOM
    acuann 3080 Replies
    • December 10, 2008
    • 03:21 AM
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  • Did you ever find a good doctor?? i appreciate all your suggestions ill look into cfs i also forgot to mention the constant drainage from my sinus and decongestants hav no effect o by the way im a guy what tests should i suggest With CFS it has been found that many of us have toxin producing staph. in our noses and this can make those with CFS a bit worst and give those symptoms you described in the above paragraph. (your doctor is probably unaware of this as this is fairly recent info on CFS, postnasal drip and toxin producing staph). Your doctor should give you a nasal swab to find out if you have staph in your nose.. and if so treating it to see if it at least relieves that symptom, (and it could slightly help your other symptoms to if it was this kind). (a quarter of the population does have staph there but usually it is non harmful, non toxin producing kind.. but as i said with CFS it is more likely to be a toxin producing kind of producing that symptom you prescribed).
    taniaaust1 2267 Replies Flag this Response
  • oh WOW. I have a lot of those symptoms (not all) and people think I'm a hypochondriac or just a wimp and complainy... good to know there's some others out there like me. The doctors couldn't identify anything specific wrong... other than I might have IBS and "need to change my diet and excersize" though I feel tired after excersize, wanna nap all the time, have general fatigue, headaches, etc... didn't realize it could be a specific thing and not just random problems that I feel...
    Plastikfear 64 Replies Flag this Response
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