Discussions By Condition: I cannot get a diagnosis.

Need answers!! Several drs No dx yet!! not sure what this is

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: ash_fox_2005
  • June 19, 2008
  • 03:31 PM

Ok here is the situation. I’ve seen several doctors and have gotten no answers. I’m 21-year-old female. I’m been experiencing some weird things in the past 4 or 5 months and have seen 6 or 7 doctors and all they can say is I don’t know… Which is really frustrating. I know something is wrong because I can barely function during the day and most of the time I feel as though I am 80 years old. Here are my symptoms…don’t know if they are related to one thing or what:

Severe fatigue- where I cant function thoughout the day can barely walk

Low blood sugar- especially after I eat it will stay in lower 70’s jump high after I eat and drop straight down.. fast which makes me dizzy, lightheaded—was tested for hypoglycemia… they said if I have it it is not severe yet and not to eat simple sugars- eat several meals a day- blah blah--- done that for a while not
Helping—also sugar got down to around 42 from fasting about 14 hours one day.. overnight and up in the middle of the day… they think its normal and my tests are in the normal range—was wondering if my liver isn’t functioning properly?

Vision problems- sparkling lights, disco like shadowy flashes- ophthalmologist and nuero-opthm said I was having 4 different types of migraines—I have never had a full-blown migraine… eyes do crazy things

Pupil abnormally dilated- one will be very dilated the other not and have been unresponsive to light

Numbness and tingling in arms legs and scalp

sometimes get a rapid heartbeat

I turn purple and blue and spotty- tried sitting standing doesn’t help- doctor suggested reynaud’s disorder or whatever- but I don’t experience the weird different color changes

Bruising very very easily it you barely poke me

Bleed easily

Menstrual problems – bleed 2 to 3 wks out of the month I am on B/c which they have been changing trying to get it to stop- did have molar pregnancy in August 07 have levels checked – for almost year now… im clear now

Pain in abdomen

Getting tons of little spider like veins all over legs arms- appeared from know where--
Very cold extremities even when it’s very hot

Bone and joint pain- bones feel weak- pain when I move my elbow or use pressure- pain in ankle, which makes it hard to walk on- usually not accompanied by swelling

Weak wrists and ankles- the other day i was walking down the hall and my ankle gave out and i fell in the floor

Headaches, dizziness, can’t think, concentrate and have difficulty remembering things

Hair falls out a little more than it used too—in gobs

I am bipolar but I take medicine for it—but some times I get I guess cranky or enraged angry but doesn’t seem to be from my bi polar cuz that has been under control

Ringing in my ears


Dr. tested thyroid said it was fine, had mra/ mri to rule out aneurysms and whatnot.. said it was fine.. one small abnormal lesion but they thought it was fine.
They thought maybe I was anemic- or had an iron deficiency said that was all fine

Did a blood work up said it looked good—
Im just needing some answers – it is very frustrating.. I don’t see why we pay doctors sooo much and they cant give us an answer.
Im really worried about this cuz it seems to be getting worse !!!

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5 Replies:

  • Ehlers-Danlos syndrome? Try here: http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html
    aquila 1263 Replies Flag this Response
  • ok thanks Ill check it out also to add to the list Ive been having a poisionous taste in my mouth and back of throat
    ash_fox_2005 4 Replies Flag this Response
  • Thanks Aquila... but i dont think thats it... ANYONE have any other suggestions???? Please
    ash_fox_2005 4 Replies Flag this Response
  • I would suggest going to see a Rheumatologist. Many of the symptoms you mentioned sounded like something they would deal with. (Hair loss, color change, fatigue, rapid heart beat, bone and joint pain, weakness, etc. these are all things Rheumatologists look for...) Maybe they can figure out what exactly is causing the problem...As for the period problems...could you have PCOS (in addition to a Rheumatological problem)?Hope you feel better.
    Macophile 127 Replies Flag this Response
  • sounds like you have chronic fatigue immunity dysfunction syndrome..also known as chronic fatigue sydrome. http://wwcoco.com/cfids/bernesx.html From what you've said IF your condition gets worst after exertion, which may be physical or mental exertion...Does it???? you then would meet the diagnostic criteria for CFS (the canadian diagnostic criteria are known as the worlds best CFS defination by most parts of world and i suggest you check those out).. IF all other possibilities have been ruled out. The fatigue level for CFS.. is often FAR MORE than in most other serious diseases. (i have an ex who's 68 yrs with bad congestive heart disease and severe diabetes.. doctors are amazed that he's still alive as his condition is very bad, he's in hospital a lot. im only 37 yrs but with the CFS.. im actually able to do far less than my seriously ill ex-partner... This is degree CFS often affects people). Fatigue does feature in so many illnesses.. but often not to the level where on cant even walk or hardly walk at all. Pupil abnormally dilated- one will be very dilated the other not and have been unresponsive to light nods... In CFS .. this is caused by the sympathetic nervous system (SNS) dysfunction which goes on in the body. Ive been ambulanced to hospital due to that symptom and other neuro like symptoms caused by the CFS (by a doctor who didnt understand that CFS causes symptoms like this). The SNS dysfunction (often also an autonomic nervous system dysfuction.. the SNS is part of the ANS) .. cause cause all kinds of symptoms in your body..including the increased heart beat, hormonal issues etc etc You will probably find that you may need to go to a doctor or specialist who specialises in CFS for a diagnoses (or to rule it out.. they are more aware of illnesses which can be confused with it). 90% of CFS patients, studies have shown are undiagnosed (most doctors dont understand this illness well..and arent up to date with the studies etc..and wont diagnose it.. Thou it is medically recognised now). www.immunesupport.com would be good site for you to check out CFS at and has a huge forum too.
    taniaaust1 2267 Replies Flag this Response
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