Discussions By Condition: I cannot get a diagnosis.

Tired of all these tests, but no diagnosis

Posted In: I cannot get a diagnosis. 96 Replies
  • Posted By: brandi1977
  • May 25, 2008
  • 05:53 PM

Hi all. I'm a 30 yr old female experiencing many symptoms that continue to get worse as time goes on. Most started a yr ago. This is rather long and I apologize for that but I've had many tests & really need answers. It seems no dr can offer a diagnosis or a suggestion as to what could be wrong with me. I've included all test results here, as well as symptoms and explanations.

Decreased alertness- Very hard to stay alert & focused on tasks.
Difficulty concentrating- Can't stay focused while reading, writing, speaking- thoughts jump around. Lose thoughts easily, particularly while explaining things
Difficulty reasoning- Hard to make decisions. Hard to calculate things in my head- even simple math
Fatigue- “sleep attacks” where eyes begin burning & hurt to keep open. Have strange sound in ears: best described as “whooshing”. No particular pattern to onset of sleep attacks, no warning. Most mornings I can't even wake up. Feeling “drunk” when waking up, staggering everywhere. Can't get awake
Sore muscles? and weakness- Decrease in flexibility. Constant cramps (feeling of tightness) in legs & arms. Arms & legs get very weak and tired easily, & hurt Constantly changing positions due to cramping. Increased difficulty with getting up from floor, getting in & out of car, getting up from chair or couch. Very sore/stiff when waking up & difficulty walking
Tremors/twitching- usually occur while resting. Sometimes while trying to grasp something or while holding something like a piece of paper. Light shaking, sometimes increases. Twitching in fingers, sometimes toes. Involuntary “jumping” of hands, legs, feet
Tingling- mostly in legs; sometimes hands (feel like they have fallen asleep). “Vibration” feeling in leg- so far just in right leg
Sensitivities to light, noises (very “jumpy”), odors (can smell things others can't or can smell quicker than others do)
“Brain fog”- feel as if I can't think straight
Speech/hearing- Difficulty finding right words, words come out different when spoken than what brain is registering, saying words backwards. Difficulty with hearing words. They sound different to others than they do me
Balance- can't walk a straight line, always bumping into things. Tripping over my own feet or on carpet
Motor skills- dropping things without warning. Grasping is difficult at times. Slower reaction time
Temperature regulation- Always cold, regardless of environmental temperature. For last few weeks, this has changed to always being hot. Sometimes get so hot that shortness of breath occurs. Feeling of smothering
Bloating- top of stomach mostly
Decreased libido- increasing loss of interest as fatigue gets worse. Too tired
Low stress tolerance- very easily stressed or irritated- getting increasingly worse but not major as of now
Urination issues- dribbling regardless of number of times wiping, when sneezing, coughing. Feels as if bladder is empty but then have wetness on pants. Immediate urge to urinate, regardless of just developing feeling. Recently started occurring within last month
Stomach- constipation alternating with diarrhea (mostly constipation). Nausea. Occasional stomach pains. Feces have horrible smell. Gas that moves through back & upper stomach area and causes pain- unable to release it
Jaw pain- thought to be TMJ
Weight gain- getting worse despite no change in appetite or eating habits. Possibly from decreased exercise as a result of increased fatigue
Sore throat- very seldom; only upon waking up
Headaches- not as bad as before; mostly from fighting to stay awake
Tests Performed & Results:
TSH: Normal
Low Back Xrays: Normal
Blood Lipid Panel: High cholesterol
Pap Smear: Normal
Neuropsychological: Difficulty with performance based tasks (specifically upper growth motor speed/ability, visual motor coordination, & manipulative dexterity). Difficulty with sustained attention & semantic fluency. Bilateral weakness within motor strip area, leading to difficulty with cognitive functioning. Issues likely a result of history of head injury
CT Scan: Normal
Polysomnography (x2): 1st study: Obstructive sleep apnea; 2nd study: Ruled out sleep apnea and determined organic hypersomnia. MSLT negative for narcolepsy
MRI- abnormalities determined to be vascular. Neuro did not give specific name and didn't seem concerned
Blood tests:
WBC 8.51 Reference: 4.50-10.70 K/Cumm
RBC 4.40 Reference: 3.90-5.20 Million
Hemoglobin 14.2 Reference: 11.9-15.5 gm/dL
Hematocrit 40.0 Reference: 35.6-45.5 %
MCV 90.9 Reference: 80.5-98.2 fL
MCH 32.4H Reference: 26.9-32.0 pg
MCHC 35.6 Reference: 32.4-36.3 %
RDW 12.7 Reference: 11.7-13.6 %
Platelet 246 Reference: 140-500 K/Cumm
Neutrophils 61.1 Reference: 42.7-76.0 %
Lymphocytes 31.6 Reference: 19.6-45.3 %
Monocytes 3.5 Reference: 3.0-8.2 %
Eosinophils 1.7 Reference: 0.3-6.2 %
Basophils 0.7 Reference: 0.0-1.5 %
Unstained cells 1.4 Reference: 0.0-6.0%
Abs Neutrophil 5.2 Reference: 1.9-8.1 K/Cumm
Abs Lymp 2.7 Reference: 0.7-4.8 K/Cumm
Abs Mono 0.3 Reference: 0.1-0.9 K/Cumm
Abs Eos 0.2 Reference: 0.0-0.7 K/Cumm
Abs Baso 0.1 Reference: 0.0-0.2 K/Cumm
Sed rate 7 Reference: 0-20 mm/hr
Vitamin B12 300 Reference: 180-914 pg/mL
Folate 8.4 Reference: 6.6-20.1 ng/mL
Ferritin 63.1 Reference: 11.0-306.8 ng/mL
HbsAg Non Reactive
Hep C Virus Ab Non Reactive
ANA Screen Negative
Heavy Metals Panel 3:
Creatinine, UR Mg/DI 66
Creatinine, UR Mg/Day Not APPL
Total Volume Random
Arsenic Urine 13.6 Reference: 0.0-35.0 ug/L
Arsenic Urine (24 hr) Not APPL
Arsenic per gram of creat 20.6
Mercury Urine (ug/L) 0
Mercury Urine (24 hr) Not APPL
Mercury per gram of creat 0.0
Lead, Urine (ug/L) 1
Lead, Urine (24 hr) Not APPL
Lead per gram of creat 1.5
SSA (Ro) (ENA) Ab, IgG 2 Reference: <40 AU/mL
SSB (La) Ena Ab, IgG 9 Reference: <40 AU/mL
Lyme Abs Detection 0.47 Reference: 0.00-1.20 LIV
EBV Ab Early AG 1.20H Reference: 0.00-0.99
EBV Ab/Nuclear Ag 6.84
ABV Ab VCA IgG 6.30
EBV Ab VCA IgM 0.08
Acetylcholine Binding Ab 0.0 Reference: 0.0-0.4 nmol/L
Acetylcholine Block Ab 0 Reference: 0-15 %
Acetylcholine Mod Ab 0 Reference: 0-20 %
Neut Cytoplasmic <1.20 Reference: <1.20
Lumbar Puncture:
Protein CSF 35 mg/dL Reference Range: 15-45
Glucose CSF 62 mg/dL Reference Range: 40-80
India Ink Prep No Exapsulated Yeast Seen
Gram Stain (Final) No Organisms Seen
Culture Result (Final) No Growth 3 days
Appearance: Clear
Color: Colorless
RBC: 9 mm
Nucl Cells, Fluid: 2 mm
Test Method: Automated Flow Cytometry Advia 120
Tube #2
Myelin Basic Protein: 1.05 ng/mL Reference Range: 0.07-4.10
Immunoglobulin G (IgG): 691 A mg/dL Reference Range: 768-1632
IgG, CSF: 2.9 mg/dL Reference Range: 0.0-6.0
Albumin, Serum: 3530 mg/dL Reference Range: 3500-5200
Albumin, CSF: 30 mg/dL Reference Range: 0-35
Albumin Index: 8.5 Reference: 0.0-9.0
IgG Index: 0.49 Reference: 0.28-0.66
CSF IgG/Alb Ratio: 0.10 Reference: 0.09-0.25
CSF Oligo Bands: Neg
IgG Synthesis Rate: 0.0 Reference: 0.0-8.0
Viral Culture: Culture received and in progress. Final results pending.
EBV by PCR: Negative
Interpretation: EBV by PCR
Lyme IgG WB CSF: Negative Reference: Negative
Lyme IgM WB CSF: Negative Reference: Negative

EBV positive but read hat EBV does not cause the symptoms-it is an underlying cause. Neuro thought MS but then said he didn't think it was. However, he put MS as the primary dx & movement disorders as secondary dx on initial exam. This might be provisional though, since it was the 1st exam. He also said I had hyerreflexia. He is stumped & sent me to an infectious disease dr, who I have an upcoming appt with. I'm currently taking Provigil for the excessive daytime sleepiness (300 mg) & it doesn't help a majority of the time. He gave me Ultram for the jaw pain & Klonopin for the tingling in my legs. He said it sounds like RLS. I had one dr tell me this was all in my head & I needed to just forget about it. Another dr told me everyone has EBV & he didn't feel this was significant to cause all of my problems. I've had fibromyalgia thrown at me, although I don't have the "trigger point" pain. I've also been told possible chronic fatigue. Something isn't right & my symptoms continue to get worse. I can't function most of the time & it's affecting my work, school and home life. I've tried everything the dr's have suggested. I've been on muscle relaxers, pain meds, and several other meds. I am so tired of being poked & prodded on. Is there anything else that it could be? Anything I haven't tried or been tested for that it could be?

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  • Hi there.. I actually think you have the same condition as i have.. chronic fatigue immunity dysfunction syndrome (also called CFS or ME). I now have get or have gotten over 82 different symptoms with it including those you have. Ive been mistaken for having all kinds of things from parkinson's to other issues due to the huge range of symptoms it gives me. If you have what im thinking you do, the normal tests most GPs do..wont show much, one needs to know what tests are relevant in this which may show up some of the common abnormalities involved in it.. eg MRI (sometimes abnormalities are found), EEG (may show up non specific findings), cortisol test may show up abnormality there etc etc . Get your morning cortisol levels and 24 hr cortisol levels checked!!!! (they may be found to be low..or even abnormaly high (some have them jumping back and forth between high and low)..due to the dysfunctions which go on in this condition) Most mornings I can't even wake up. Feeling “drunk” when waking up, staggering everywhere. Can't get awake This happens in CFIDS.. they think now often to do with the cortisol which in many of us doesnt pick up in the mornings like it's supposed too, this can make it hard for us to wake up (i often end up staggering everywhere too, walking into walls etc). http://www.endfatigue-dev.com/articles/Article_low_morning_adrenal_cortisol.htmlhttp://www.cdc.gov/CFS/publications/clinical_10.htm (studies have shown that a third of CFIDS or CFS patients have this issue) for a good list of the range of CFIDS symptoms and the percentage of CFIDS patients who get each symptom.. check out http://wwcoco.com/cfids/bernesx.html You will see how your symptoms do fit with this. Most doctors dont recognise CFS patients even if they see one.. as they just dont know much about this illness. (Most doctors dont diagnose it as they dont know enough about it and are not up to date with the latest studies etc). You need to go and see a doctor who specialises in this.. who has many CFS patients so can recognise the illness. Studies have shown that it can take an average of 7 yrs.. before one gets diagnosed.. and that 90% of patients with this.. are out there sick and undiagnosed. If you do have CFIDS.. it is likely you also then have irritable bowel syndrome (IBS), food intollerances and other issues. All one can do is to treat each symptom or other problem you have from it..eg learn how to manage IBS.
    taniaaust1 2,267 Replies Flag this Response
  • this describes CFS/ME symptoms even better http://www.ahummingbirdsguide.com/themesymptomlist.htm eg COGNITIVE & NEUROLOGICAL DYSFUNCTIONSA worsening of symptoms (including cognitive function) with cognitive exertion beyond a certain level. Problems with memory including; difficulty making and consolidating new memories (particularly short-term memories), difficulty recalling formed memories and difficulties with visual recall and with immediate and delayed verbal recall are common. Short-term memory problems may lead to people forgetting where they are or what they are doing, this can be so severe that patients are unable to finish a sentence. Facial agnosia may also occur (not being able to recognise faces, even those of close friends and family)Multi-tasking problems, an inability to learn to perform new tasks, forgetting how to perform routine tasks and a difficulty with simultaneous processing. There can be a difficulty with following step-by-step instructions, recipes or performing any tasks which require a series of separate actions. Sequencing dysfunction can also occur; inability to look words up in a dictionary, to look up phone numbers in a phone book or to organise files etc. Patients may also need extra sensory cues to complete tasks (for example, the patient may need to be able to see what they are doing to be able to complete a task where formerly the task could be completed using touch alone eg. turning on a light or operating the controls in a car)Cognitive slowing (tasks can take much longer than usual)Impairment of concentration; maintaining a reasonable level of concentration on a task for even a short period of time may become extremely difficult, or impossible. There is a need for mental micro-rests.Difficulty with visual and aural comprehension; difficulty following oral or written directions, trouble distinguishing figure from ground and speech comprehension difficulties. Greater difficulty with auditory comprehension than visual is common. Word, letter and short term ordering problems, for example; transposition - reversal of letters or numbers, words or sentences when speaking or writing (pseudodyslexia)Inability to locate the words for writing (Agraphia). Handwriting may also change completely with the onset of illness, may be deformed in a way consistent with brain damage (this may wax and wane with the severity of the illness)Problems with reading (Alexia) or word blindness; patient can still read but what is read is not comprehended and cannot be compared with known information already stored. If reading is still possible, text may have to read many times before it can be comprehended.Difficulty or an inability to understand speech (Wernicke's Aphasia); words are heard clearly, they are not garbled, but they make no sense. It is a loss of the ability to interpret normal language. When the input is aural, there seems to be a loss of the initial orienting information. The person is actively listening, but the information simply does not register at all or must be repeated several times before it registers.Increased need for visual cues in understanding speech; visual or multisensoral cues are an important compensatory tool in M.E. (for example, a patient may not be able to understand the same conversation with the same person on the telephone that they understood perfectly well when conducted face-to-face). In speaking, important elements are often left out of the sentence such as the verb or subject, sometimes the syntax is askew. At times speech makes no sense and/or does not relate to the question asked. Sometimes speech comprehension is delayed which can result in long pauses, interruptions, mistiming of responses and apparent non sequiturs. Patients themselves may or not be aware of these problems with their speech. Incorrect word selection (paraphasia) is common, such as using the wrong word from the right category or using a word that sounds similar to the correct word but has a different meaning. Commonly used words become hard to retrieve. These problems combined may result in a significant loss of communicative ability. There can also be a difficulty pronouncing words intelligibly (Dysarthria) or a complete inability to express language (Broca's Aphasia).Dyscalculia; (loss of arithmetic skills) an inability or difficulty to do simple additions and other calculations, to count money, add up columns etc (irrespective of the quality of former mathematical abilities) is common. There may also be a difficulty or confusion with following timetables or keeping scheduled appointments.Loss of verbal and performance intelligence quotient (IQ) (A 20 point loss is average, although for some people the loss is far more profound)A loss the ability to block out extraneous and unwanted information and noise; M.E. patients lose of the ability to distinguish noise from required information and tend to shut down all intake after minimal prolongation of the information signal. For example, a person may not be able to understand speech when there is more than one person speaking, more than one conversation taking place, or when there is a TV or radio on in the background. (This receptive shutdown has alarming connotations for making memories and can also at times create real danger to the M.E. patient) An exaggerated response to even small amounts of additional input or stimulus (light, noise, movement, vibration) is common, causing incoming messages to become scrambled or blurred resulting in distorted signals and odd sensations (ie. low level seizure activity). Even very low levels of light or noise etc. can also causean exacerbation of other symptoms, or of the severity of the illness generally. See section 3 for more informationPolyneuropathy; a neurological problem that occurs when many peripheral nerves throughout the body malfunction simultaneously. Many polyneuropathies have both motor and sensory involvement and some have autonomic dysfunction. Hyperreflexia; overactive or overresponsive reflexes eg. twitching or spastic tendencies as well as the lessening or loss of control ordinarily exerted by higher brain centres of lower neural pathways (disinhibition).Perceptual and sensory dysfunctions eg, spatial instability and disorientation. There may be a loss of co-ordination or clumsiness - difficulty in judging distance, placement and relative velocity (caused by proprioception dysfunctions, proprioception being the perception of stimuli relating to your own position, posture, equilibrium, or internal condition) Extension or quick rotation of the neck can cause dizziness (also due to proprioception dysfunctions)Altered time perception (losing time), feeling 'spaced out' or 'cloudy' or not quite real somehowDisorders of colour perception - recognising colours but forgetting what they mean, (Seeing the red light at an intersection, knowing it is red, but not recognising that red means ‘stop,’ for example)Abstract reasoning dysfunction; difficulty organising, integrating, and evaluating information to form conclusions or make decisions (some patients find it almost impossible to make decisions)
    taniaaust1 2,267 Replies Flag this Response
  • ME symptoms continued "Stroke-like episodes Short periods of amnesia may occur which may be associated with disorientation where the patient momentarily does not know where or who she is which may cause considerable anxiety. Some patients lose large parts of the day but this is infrequent. In most cases the patient can be brought out of the amnesiac attack with cues In severe illness patients can become unconscious, comatose for up to 23, 24 hours a day (the brain becomes unable to maintain wakefulness). There can be a difficulty in maintaining full consciousness for more than a few seconds, minutes, or half-hour periods at a time. Volitional problems; difficulty starting or stopping tasks, or switching from one task to another (a neurological dysfunction where the body does not respond appropriately, or quickly, or without difficulty, to the minds commands; is related to sleep paralysis. This is a central dysfunction and may be similar to that seen in Parkinsonianism) A feeling of agitated exhaustion is common (neurological in origin) Emotional symptoms include: mood swings (emotional lability) – crying easily, excessive irritability etc or intense emotions such as rage, terror, overwhelming grief, anxiety, depression and guilt. Sometimes there can be an emotional flattening or situations may be erroneously interpreted as novel (due to prefrontal cortex dysfunction). Disinhibition may occur to varying levels. Anxiety and panic attacks may occur DIGESTIVE DYSFUNCTIONSOesophageal spasms (felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back) or oesophageal reflux (heartburn)Difficulty swallowing (or an inability to swallow) Great thirst, increased appetite, food cravings or lack of appetiteInability to tolerate much fat in the diet (gallbladder problems) Changes in taste and smell; an increased sense of smell or bizarre smells. Strange taste in mouth (bitter, metallic) Multiple new food allergies and intolerancesBloating, abdominal pain, nausea, indigestion or vomiting is common, as is diarrhoea, constipation or an alternation between the two.Intense gallbladder pain (in the upper right quadrant of the abdomen) or liver pain, tenderness or discomfort. Liver problems (along with other problems) can lead to a ‘poisoned’ feeling.Alcohol intolerance is common (ranging from mild to a total intolerance)ENDOCRINE & NEUROENDOCRINE DYSFUNCTIONS Thyroid; thyroid pain, inflammation or dysfunction (usually secondary hypothyroidism). Adrenal gland dysfunction; aspects of both overactive and underactive adrenal function or pituitary dysfunctions Loss of thermostatic stability - suddenly feeling cold in warm weather, recurrent feelings of feverishness or chills or hot flashes particularly involving the upper body. Feeling cold and shivering one minute and hot and sweating the next is common. A low-grade fever may occur following exertionSubnormal body temperature and marked diurnal fluctuation (temperature fluctuation throughout the day)Cold hands and feet, sometimes on only one sideSweating episodes (profuse sweating, sometimes even when cold) - with the sweat often having quite a sour smell. Night sweats and spontaneous day sweats may occurSwelling of the extremities or eyelids Loss of adaptability and worsening of symptoms with stress (due to endocrine dysfunctions etc.)EXERTION & PHYSICAL ACTIVITYAn exacerbation of symptoms with physical activity beyond a person’s individual limits, and a worsening of the illness generally (etc.) with continued overexertion. See section 3 for more information.A sudden unexpected feeling of being 'high' can occur (due to neurological dysfunctions) leading to (usually short) bouts of physical hyperactivity Severe muscle weakness (paresis) or paralysis. Muscles will often function normally to start with, but pain and weakness (or paralysis) develop after short periods of use and then take 3, 4 or 5 days (or longer) to resolve (normal muscle recovery is around 200 minutes). Problems arise from sustained muscle use - it is a pathologically slow or impaired recovery of muscle after exercise. (It is a problem involving the metabolism of the muscles). Thus a patient may be easily able (for short periods) to lift something moderately heavy one or two times, but be unable to lift something very light many times (such as a soup spoon for example). This muscle weakness/paralysis affects all muscles/organs, including the heart, eyes and brain.Impaired cognitive processing, a reduced maximum heart rate, a drop in body temperature or dyspnea (shortness of breath) with overexertion. See section 3 for more informationLoss of the natural antidepressant effect of exerciseInappropriate signs of immune system activation can be brought on by overexertion (ie. flu-like symptoms)
    taniaaust1 2,267 Replies Flag this Response
  • ME Symptoms continued "HEADACHES Onset of a new type, severity or pattern of headaches is common. See also the PAIN sectionA feeling of extreme pressure felt at the base of the skull and/or severe pain or sensation of pressure behind the eyes (or ears). Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest) can occur, as can hypoglycaemia headaches (generalised prickly ache over the top of the head) HEARING, VESTIBULAR & SPEECH DYSFUNCTIONSHyperacusis - an intolerance to normal sound volume and range (but particularly sounds in the higher frequencies). Sudden loud noises can also cause a startle response (flushing and a rapid heartbeat) and there can also be an extreme intolerance to vibration or movement. Excessive sensory inputs (noise, vibration) may lead to low level seizures and exacerbations of other symptoms . See section 3 for more informationTinnitus - ringing, buzzing, humming, clicking, popping and squeaking noises generated in the ear Hearing loss - sound can be muffled or indistinct or sound strangely flat, there can be a loss of tone perceptionSharp transient ear pain, deep itching in the ears and/or swelling of the nasal passages Dizziness or vertigo - a sensation that your surroundings (or you) are spinning wildly (can cause vomiting). Vertigo may also be expressed in a milder form as an inability to watch TV or to read.Acute profound ataxia (balance problems) or a sensitivity to motion/movement (which can affect balance) Nystagmus - a rapid involuntary oscillation of the eyeballs The voice may become very weak, hoarse or fall to a whisper, and then there can be total loss of speech. There may also be a slowed rate of speech, sometimes with stammering, stuttering, muddled or slurred speech or difficulty moving the tongue to speak or getting enough air to speak more than a few words at a time. URINARY TRACT DYSFUNCTIONSUrinary frequency and bladder dysfunction, uncomfortable or painful/burning urination (Dysuria), difficulty passing urine, incontinence and/or nocturia (excessive urinating at night) REPRODUCTIVE DYSFUNCTIONSMenstrual cycles may become shorter, longer or irregular. Periods may also become lighter or disappear altogether (usually when illness is severe) There may also be an intensification of M.E. symptoms before and during a period Lowered libido ImpotenceWEATHER SENSITIVITYIntolerance of extremes of hot and cold weather, may cause an onset of the homeostatic disequilibrium symptom complex. Periods of extended hot weather in particular are seldom well tolerated by M.E. patients.Insomnia, migraines, irritability or generally ‘feeling off’ a day or two before the weather changes. Changes in temperature or humidity can cause stiffness or increased aching or pain in the muscles. Changes in barometric pressure can cause night sweats and spontaneous sweating during the day WEIGHT CHANGES Marked weight gain (often independent of dietary changes)Marked weight loss (often independent of dietary changes). Rapid weight loss can also occur despite large quantities of food being eaten. (Weight loss independent of dietary changes seems to be more common amongst younger sufferers, particularly children and teenagers.)"etc.. (i think that gives you the idea).
    taniaaust1 2,267 Replies Flag this Response
  • I have a few questions and then I may have a couple of suggestions: 1. Have you had your ovarian hormones checked? Are you on BCP? 2. What was your TSH and the lab range? 3. What was your thryoid blood work for FT4 and FT3? 4. Were you tested for the antibodies of Graves Disease? Hashimotos disease? I really hope I might be able to help...please answer! Joan
    Joan5555 316 Replies Flag this Response
  • I've never used this board before so I'm not sure how to reply individually. I apologize that I have to lump responses together. Blaze: I've been tested for Lyme's disease. Both blood and CSF fluid tests came back negative. I see the infectious disease dr on June 4th so I hope she is able to give me some answers then. Taniaaust1: Thank you for all of the information. I have so many of those symptoms. Chronic fatigue was one of the diagnosis my PCP gave when I saw him but he didn't specify chronic fatigue syndrome. I think the dr's are leaning more towards that being the problem. It would make a lot of sense given my symptoms. Joan5555: To answer your questions- 1. I had a hysterectomy July 2001. They left my ovaries. I probably need my hormone levels checked. I honestly can't remember ever having them checked. No BCP because of the hysterectomy. 2. I didn't get my TSH lab results from the dr. She just told me they were normal. I left a message for the medical records lady to call me so I can request my records. She was out of the office when I called on Thursday. I'll try her again on Monday. 3. See answer to question 24. I have not been tested for antibodies of Graves Disease or Hashimotos disease, as far as I'm aware. The only tests I have had done are those listed in my intial post. Are these tests the infectious dr might perform? If so, I will ask her when I see her on June 4th. Honestly, I think my neuro sent me to her because he had no idea where else to send me. All he could find was EBV.
    brandi1977 7 Replies Flag this Response
  • Hysterectomy: since you have your ovaries you can still be experiencing hormonal upheaval....especially since the uterus is gone....please visit this really great site (for ladies like you even though you are only 30, and those in perimenopause and menopause) and ask the ladies there: www.power-surge.com seriouly, the women over there are so caring and will try to help in this area. Actually the hysterectomy might have thrown you into premature menopause......it can be a bit rough but you can get through it and you may benefit from some hormonal help like BCP or HRT for a while since you are still so young. As far as the thryoid goes, pursue it with all determination. Graves Disease and Hashimotos disease are not infectious diseases....these are autoimmune diseases where the body sort of mistakes itself for the enemy and "attacks" the thryoid in this case. However, you often do see thryoid problems or autoimmune diseases that run in families...like thryoid, diabetes, arthritis and so forth. 1. You may be dealing with thryoid and ovarian (menopause?) issues. Do pursue both....actually they are both part of the endocrine system so it is not surprising for one to throw the other off. In addition, ovarian problems and thyroid problems have very, very similar symtpoms...often overlapping. 2. When you do get your thryoid results do post your results here...as I mentioned before insist on all blood work TSH, FT3, FT4 and the antibodies for Graves and Hashimotos. Visit Mary Shomon's thyroid site for more detailed info and a great forum. 3. Also get your ovarian hormones checked....some women after an Hist. benefit from HRT...others go the natural route....do post at www.power-surge.com you will be glad that you did! Joan
    Joan5555 316 Replies Flag this Response
  • Brandi, i'm sorry. I know just how you feel. I have had many of the same symptoms and many of the same tests plus a few. The best I got so far is "It's very complicated" and "if I didn't hate the term Chronic Fatigue...". My understanding is that CFS is a name for something the medical community has seen enough that thye felt like they need a name for it but they have no understanding of what it is, why it happens, or what to do about it short of treating symptoms. I keep getting passed off from one specialist to another as they get frustrated. So far I have seen a Neurologist, Infectious Disease Dr, Rheumatologist, Ear Nose & Throat Dr, Opthalmologist, Psychiatrist, Physiatrist (x2) and my PCP who is also a hematologist/oncologist. When you first got sick did you have trouble with coordination and speech and stuff all the time or did it come and go? I tend to have trouble when I least expect it and never when I am actually at the Drs office. Can anyone tell me what M.E. stands for? I hope someone can find a way to help you at least manage your symptoms soon. I know how frustrating it is. Hang in there in the meantime.
    dizzy lizzie 192 Replies Flag this Response
  • Joan, I got my medical records today. The only thing it says is TSH- in range 2.471. The expected range is 0.350-5.500. I went to a psychiatrist today because dealing with this for a year has really stressed me out. He said he doesn't feel I suffer from depression, anxiety, or any other psychological disorder. He noticed a lot of stress, which he said is normal given all I've been through. He feels my PCP probably hasn't performed all the tests she should have. We ran out of time and he didn't get to go over my lab work so he scheduled me to come back next week. The interesting thing is that he was a neurosurgeon prior to going into psychiatry. I'm hoping that he can give some insight into possible tests that have been overlooked or results that were overlooked.
    brandi1977 7 Replies Flag this Response
  • Lizzie, Yes, those were the very symptoms that led me to start seeing a doctor. It first started with a few episodes here and there and eventually became a daily issue. That's when I went to the neurologist. The psychiatrist I saw today wants to look at my lab work on my next visit. He was previously a neurosurgeon prior to practicing psychiatry so I hope he might be able to offer some suggestions. He was stumped also and started to say something about a diagnosis and not being set in stone, and then he stopped and said let's wait to see what the lab work says. I hope you will have luck in your health issues also. I share the frustration with you.
    brandi1977 7 Replies Flag this Response
  • My understanding is that CFS is a name for something the medical community has seen enough that thye felt like they need a name for it but they have no understanding of what it is, why it happens, or what to do about it short of treating symptoms. I keep getting passed off from one specialist to another as they get frustrated. So far I have seen a Neurologist, Infectious Disease Dr, Rheumatologist, Ear Nose & Throat Dr, Opthalmologist, Psychiatrist, Physiatrist (x2) and my PCP who is also a hematologist/oncologist. I tend to have trouble when I least expect it and never when I am actually at the Drs office. Can anyone tell me what M.E. stands for? . M.E. stands for Myalgic Encephalomyelitis. CFS was originally called Myalgic Encephalomyelitis before they went and changed the name in the 1980s, (along with some of the diagnostic criteria!! which they widened, so now that some people who may not even have ME.. now come under the ME bracket.. so then ME became a subgroup of CFS! Thou ME is much more neuro with more neuro findings etc). They are now trying to change the name, yet again :rolleyes: , to ME/CFS now, (as CFS gives a completely false impression that this illness is just about fatigue). Honestly, the whole thing is bull****.. they cant even stick to a name for this illness! (it's just called so many different things.. post viral fatigue syndrome PVFS and chronic fatigue immunity dysfunction syndrome CFIDS.. along with other names too. Each country too currently has a different diagnostic criteria! Thou Canada's diagnostic criteria is recognised as the best and many countries including where i are in Australia are using that one) The latest is that they have now found 88 different abnormal genes (to do with the neuro and immune systems) in this illness..so now are finally working on a diagnostic test (thank God for that!). Depending on what abnormal genes you have, they actually can tell what CFS subgroup you fall into. Latest studies also show that there is an oxygenation problem going on with the cells. So I personally think that they are FINALLY starting to understand this illness some and it's now just a matter of time and some more studies before there is treatments out for people with this condition. (Studies show that the treatments out for it now CBT and GET.. make a third with this condition actually worst, some permanently). If you have this condition.. you NEED to find a doctor who is willing to keep up with the latest research on it.. or find a doctor or specialist..who is also specialising in this condition. It will just waste your time and money and strain your health, jumping from one specialist to another (most of who will think you are crazy, as they run the wrong tests as they are naive as which ones to run with this condition, so dont run the tests which will show up abnormalities).... dont run about blindly, trying to get treatment for this. The only one in the know are those who are up with this condition and are treat people with it. (so contact your local CFS or ME organisations or support groups for doctors recommendations).
    taniaaust1 2,267 Replies Flag this Response
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  • Brandy!!!Yes, you tested for lyme, with the test that are not good, some actions are done right now to change the tests.You are the first persons that write alomost all the lyme symptoms in her topics. The infectious doctor can't nothing for you, they don't believe in lyme cause of a false guidelines: Here s the proof of the general attorney:http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284So if you want to survive, go on lymenet and ask help for a doctor ok!A specialist doctor of lyme (LLMD) just with your symptoms he can do you a clinical diagnosis and he will also make you pass the good tests ok.Read about it, you'll see that is true.Please, listen to us, you have a late stage lyme disease!This is a serious and misdiagnosed sickness:here is a movie coming soon: http://www.openeyepictures.com/underourskin/uos_background.htmlGood luck,Fanny
    Fannou 111 Replies Flag this Response
  • Fanny, I can see how strongly you advocate the misdiagnosis of Lyme Disease but I think stating I have late stage Lyme Disease based on my symptoms is a premature evaluation. I did read the site you posted and I do have SOME of the symptoms listed. However, I don't have "nearly ALL" of them as you stated. In fact, many of they symptoms I do have are also similar to ones shown in MS, CFS, Fibromyalgia, and many other disorders/diseases. I can't say whether the test was wrong or right considering I, like many people, trust that doctors will do the proper tests. Doctors aren't perfect and they miss vital information sometimes, but I would prefer to leave it up to my doctors to figure out what is wrong instead of assuming that I have a particular disease. Thank you for posting the information and I hope you continue advocating what you feel strongly about.
    brandi1977 7 Replies Flag this Response
  • Hi all. I'm a 30 yr old female experiencing many symptoms that continue to get worse as time goes on. Most started a yr ago. This is rather long and I apologize for that but I've had many tests & really need answers. It seems no dr can offer a diagnosis or a suggestion as to what could be wrong with me.I'd definitely pursue the thyroid tests which your doctor failed to do, Free T3 and Free T4 and the thyroid antibodies.It took me 30 years to get diagnosed with Hashimoto's Thyroiditis! :eek: And I still have some odd symptoms which don't fit that diagnosis so I'm pursuing a diagnosis for those.Most of your symptoms can be attributed to thyroid disease. I have had most of them. The others might be attributed to vitamin/mineral deficiencies which are common with hypothyroidism due to a slowed metabolism.My TSH stayed around where yours is and no doctor gave me any medication yet I was quite ill. By the time I got a diagnosis, my TSH only went up to 6.55, yet I was nearly bed ridden. So as you can see numbers don't mean much. Others have TSH's in the 100's and function quite well suffering only from fatigue. There's no rhyme nor reason to the disease. No two people present with the same symptoms. No two people feel right at the same dose of thyroid medication. It's not like testing for Rheumatoid Arthritis where if you have a positive test result you have it. Normal for one person maybe abnormal for another.90% of the population has a TSH around 1.5 (normal functioning thyroid and no symptoms).
    Anonymous 42,789 Replies Flag this Response
  • It took me 30 years to get diagnosed with Hashimoto's Thyroiditis! :eek: And I still have some odd symptoms which don't fit that diagnosis so I'm pursuing a diagnosis for those. Dxd.. i remember a lot of your posts from the past... did you know that Hashimoto's is more common in CFS? and is counted as one of the illnesses which can be coexisting with it. One can have both these things together.. maybe that is your answer to why you have symptoms which dont fit into the Hashimoto's.
    taniaaust1 2,267 Replies Flag this Response
  • Yep Dxd, that's been my impression of doctors thus far...if something isn't out of the "normal range", it's not abnormal. I'm not a doctor, nor do I have a ton of medical knowledge, but I know quite a bit. I know that a lot of things can be the cause of just one symptom. And I also know that a normal test doesn't always mean things are normal. Since I've encountered the whole scenario of doctors being convinced my tests are ok and can't find anything wrong, I've done a lot of research myself. I've came up with so many different possibilities because every body system is connected to another in some way. Interestingly, I obtained my former PCP notes yesterday and as I was reading, found that she put Munchausen Syndrome on my report. It's not really a surprise I guess since she told me that it was all in my head and I needed to find who I am "within myself". That's why she's my former PCP :) At this point I've tried convincing three PCP's that something is wrong and am having no luck. I just keep searching.
    brandi1977 7 Replies Flag this Response
  • Interestingly, I obtained my former PCP notes yesterday and as I was reading, found that she put Munchausen Syndrome on my report. It's not really a surprise I guess since she told me that it was all in my head and I needed to find who I am "within myself". That's why she's my former PCP :) At this point I've tried convincing three PCP's that something is wrong and am having no luck. I just keep searching. Mucnchausens lol.. now that's not all that common (I read thou someowhere there it's common to be misdiagnosed with it), and if she thinking you had that.. why on earth didnt she refer you on to a psychriastrist??? What a cop out!! Im so glad to hear that she's your EX doctor.
    taniaaust1 2,267 Replies Flag this Response
  • At this point I've tried convincing three PCP's that something is wrong and am having no luck. I just keep searching. http://www.immunesupport.com/library/showarticle.cfm?id=8861&T=CFIDS_FM&B1=EM052108C (you may find this study interesting). ............................. Dxd. after i made that post to you.. i actually found a new email of a new study, in my inbox about Hashimatos.. thyriod issues and CFS/ME. One of the famous doctors/researchers (Hyde) in the ME scene.. he's saying there is an actual subgroup of thyriod issues and ME and he's defined this group. If you are in this subgroup.. you actually have a high risk of thyriod cancer.. so be careful! AbstractThyroid malignancy in ME/CFS patients greatlyexceeds the normal incidence of thyroid malignancyin any known subgroup. The thyroid malignancyincidence in the ME/CFS group may exceed 6,000 /100,000.As part of their investigation, MyalgicEncephalomyelitis / Chronic Fatigue Syndrome(ME/CFS) patients should be examined by thyroidultrasound for evidence of thyroid pathology andmalignancy. Thyroid pathology may be missed in thisgroup of patients if investigation relies only uponserum testing for TSH, FT3, FT4, microsomal andthyroglobulin antibodies, which are usually normal.Thyroid uptake scans tend also to be normal andmay also miss malignant lesions. A newly recognizedsyndrome may exist in ME/CFS patients characterizedby:(a) thyroid malignancy,(b) persistent abnormal cortical and subcorticalSPECT brain scans (NeuroSPECT) ,(c) failure of thyroidectomy surgery and hormonereplacement to correct the fatigue syndrome, and(d) an unusual high incidence of cervical vertebraeosteoarthritic changes.ME/CFS patients with treated non-malignant thyroiddisease and abnormal NeuroSPECT scans may alsofail to improve despite adequate thyroid hormonereplacement. 8.) The cervical vertebrae pathology noted may bemere coincidence, but is being followed up in otherME/CFS patients with thyroid pathology. However,only 1 of the subjects, who played college football,had any significant history of cervical vertebraetrauma. ME/CFS patients describe muscle weaknessas a primary dysfunction. Neck pain is a commoncomplaint in this group of patients. It is possiblethat, due to cervical muscle weakness, the cervicalspine is forced to support the weight of the headdirectly. Over a period of time this may incur repeatlow-grade trauma that results in cervical vertebraeand disc pathology.9.) Although only 2 of the 6 patients demonstratedpathological findings consistent with Hashimoto'sthyroiditis, one should also consider whether these 6patients, each with persisting evidence of CNSencephalopathy, do not constitute an early butpersisting Hashimoto-like encephalopathy.10.) All 6 patients with thyroid malignancy havesubcortical NeuroSPECT pathophysiology. I have yetto find an ME/CFS patient with thyroid malignancythat does not have subcortical pathology. Theprimary injury and cause of fatigue in ME/CFSpatients is probably not in the thyroid, since patientswith treated malignant or non-malignant thyroiddiseases general fail to recover. Conclusions1.) ME/CFS patients who demonstrate the following:a. Abnormal SPECT scans involving cortex andsubcortical perfusion defects,b. Thyroid malignancy,c. Whose fatigue syndrome does not recover afterappropriate surgery and thyroid hormonereplacement, andd. Have a tendency for cervical vertebrae pathologymay constitute a chronic subgroup of ME/CFSpatients.2.) ME/CFS patients should all be evaluated bythyroid ultrasound and, where appropriate, needlebiopsy to rule out thyroid malignancy and otherthyroid pathology. The fact that ME/CFS patients mayhave normal serum chemistry for TSH, FT3, FT4 andnormal Microsomal and Thyroglobulin antibodies doesnot eliminate thyroid disease.3.) A chronic Hashimoto's Encephalopathy= likesyndrome may be concurrent with ME/CFS patientswho have thyroid malignancy or multinodular thyroiddisease or other thyroid pathology and chronicsubcortical & cortical brain SPECT changes.Non-recovery after thyroid malignancy surgery andadequate thyroid hormone replacement may berelated to this chronic ME/CFS encephalopathy.4.) ME/CFS patients without thyroid malignancy yetwith treated thyroid pathology, and who have notrecovered from their fatigue syndrome, may alsohave a similar NeuroSPECT brain dysfunction.
    taniaaust1 2,267 Replies Flag this Response
  • Hi: I am so sorry you are suffering this way and still so young! I have had a lot of the symptoms you mentioned and they probably started just a bit and went off and on from about age 18 (when I went off to college) to age 40. At age 41 having suffered with "events", I got full blown Graves Disease an autoimmune disease of the thyroid. Prior to that the doctor suspected the thryoid problem...I may have been having events or episodes of the disease or even thryoidisit (inflamation), over all those years but not bad enough or lasting long enough to warrent medication. Once I got Graves Desease all H broke loose: it threw my whole endocrine system off and in addition to that I entered perimenpause and my ovarian hormones got off as well. Now some folks with problems like I had really benefit from alternative intervention...unfortunately I am not one of them...BUT I HAVE seen others really helped with acupuncture, Kampo, and chinese medicines....have you seen a different type of doctor? One who may be open to dealing with the whole body as it seems you have a whole body problem? Sometimes DOs are good at this, of course chinese medicines doctors, and a licensed acupuncturist. One very close friend had multiple allergies, couldn't get pregnant, ovarian, hormonal problems, horrible red patches on the skin...she was really, really helped by acupuncture and Kampo. Though you certainly CAN keep looking for the "cause" (don't stop I am not suggesting to do that) but if it might be a good idea to give it a rest, just for a while, and try to deal with the symptoms a bit. Sometimes we may not know the cause, but if we can lesson the symptoms despite whatever the cause, that is still good, right?....honestly I have really seen some folks helped ....of course not ALL, I am not going to say it works for all or that all alternatives work for everybody....many did not for me, and I would not waste my money on "anti-aging" and detox and all that "stuff" on the internet...I am talking about seeing licensed, legitimate Kampo, chinese meds and or acupuncture doctors or a DO or other....... I hope this may help, and I hope you will be encouraged and uplifted that though you may have difficulty finding the cause of all your symptoms, you can STILL FEEL WELL with proper treatment...does this make sense? Hope it helps. Joan
    Joan5555 316 Replies Flag this Response
  • I had many of your same symptoms and went through most of your tests and was very sick for the last 2 years and still sort of sick STILL. Finally my ear nose throat doc tested me for food allergies and I was VERY allrgic to wheat/milk and eggs (IGE type). These are in everything! Since I stopped eating these things about 2 months ago i feel probably about 75% better. I still have some lingering styptoms and i trully dont think my food allergies were ever my main issue...BUT i think some illness that i picked up at first altered my immune system and therefore my body started to attack things I once could tolerate just fine. You may want to be checked for IGE and IGG allergies. IGE- Immediate response allergies (anaphylaxis, dizzyness, nausia,...ect)IGG- Delayed allergies (nausia, aches and pains, headaches.....ect) Good luck!Stacky
    stacky 52 Replies Flag this Response
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