Discussions By Condition: I cannot get a diagnosis.

Help! Fatigue for 5 years!!

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: cef05e
  • March 25, 2011
  • 07:22 PM

I'm a 23 year old female. About 5-6 years ago I started feeling tired all the time. I went to my dr and of course had all the psych evaluations and was tested for mono and thyroid function. They decided I was depressed and anxious and so I've been treated for depression and anxiety this whole time. I've tried multiple antidepressants and it never seems to help the fatigue. It's slowly getting worse. The last couple of years I've been so tired that I developed neurological symptoms as well. I'm off balance and feel like I might fall going down stairs or down slopes. I mix up words, and can't think of other words. Also, I work as a patient rep at a dr's office, and when I take down patient's numbers I have trouble making my hand write down what my brain hears. I used to get all A's in school easily, but school's a struggle now because I'm so tired and my brain has a hard time retaining anything. My GPA after college was embarrasing. I also have episodes where it feels like my brain shuts off for a second.
In college I started taking dance. I had a horrible pain in my hip, and my doctor said it was tendonitis. After a few weeks, it went away. However, recently I've had a couple times where my left hip or knee will hurt so bad I limp. My shoulder hurt once too. Every time my doctor just says it's tendonitis. I don't know if this is a symptom, or if it's just because when I'm at home I lay in bed a lot. I try to exercise, and I have a pretty active job.
Please help! I've seen 2 PCP's, 2 sleep specialists, 1 neurologist, 1 neurologist/sleep specialist, and I'm scheduled to see a geneticist soon (even though he said he didn't think he could help me). I've had multiple blood tests that include ANA, Rheumatoid arthritis, CBC, thyroid, cortisol, and vitamin B12 all normal. I've had 4 normal overnight sleep studies. And one normal MSLT. I had a normal actigraphy study that shows I get an average of about 9 hrs a night of sleep. I also had a normal sleep-deprived EEG. The only abnormal tests I've had were another MSLT where my sleep latency showed hypersomnia but no REM sleep during naps. I've also had an abnormal vitamin d blood test where I had a deficiency. I've been taking vitamins for that, and I guess it helps a little bit, but not really that noticeably. I've also recently had an MRI of the brain that showed 12-15 unspecific foci in T2 that were a/b 8 mm. My neurologist/sleep specialist said it's not a brain tumor and she doesn't think it's ms, but I didn't quite get a clear answer of what it might be. I haven't had any trauma in my life or really any bad virsuses besides mono. I also don't have a history of headaches. Maybe an autoimmune disease?
Another weird piece of the puzzle is that my estranged maternal grandfather just died and I have letters he wrote to my mom a while ago. He wrote about being tired all the time and that it started the same age my fatigue started. He said that his entire life he could not function without ritalin. Could this be a genetic disorder?
So far my doctors are kind of at a loss, and I don't know where else to turn. My insurance won't cover the mayo clinic. Right now I'm taking Welbutrin (150 mg) and Ritalin (20 mg) every day, and I'm still tired. Although, there's a noticable difference when I'm not taking the meds. I'm even more tired. The meds definitely help with cognative stuff.
I've tried sleeping pills at night to see if that makes a difference and it didn't. My doctors tried prescribing nuvigil and provigil but since there's no diagnoses, my insurance company has denied it about 5 times. I've tried adderall but it made my heart race. I've tried exercising a lot, and that just makes me even more exhausted.

It seems like over the last 5 years it's getting worse and worse. I'm afraid I'll just keep going down hill. I don't want it to keep going that way. Please help!!!!!

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  • I've also recently had an MRI of the brain that showed 12-15 unspecific foci in T2 that were a/b 8 mm. My neurologist/sleep specialist said it's not a brain tumor and she doesn't think it's ms, but I didn't quite get a clear answer of what it might be. I haven't had any trauma in my life or really any bad virsuses besides mono. Your symptoms including your MRI make me wonder if you have a very mild case of CFS/ME (too mild to qualify for a fairly certain diagnoses). In CFS/ME there "can" be abnormalities which show up on a MRI.. these being numerous little leisons or little bright spots on the MRI but they are different to the MS ones. (unspecific foci, I think those are lesions or show up as bright spots???) If you do a search for abnormality CFS MRI you should be able to find something on it. (there may be something mentioned on this in the Canadian Consensus CFS Defination document for medical practioners as it was mentioned in my overview copy of it.............. "Magnetic resonance imaging scan: single-photon emissioncomputed tomography: Some CFS researchers have observedapparent differences in the cranial blood flow between CFSpatients and controls. These studies remain unconfirmed, andimaging tests should not be performed as a diagnostictechnique for CFS." "Evidence From recent 2007 IACFS/M. E. conference:New methods in viral studies using refined technology showfurther abnormalities in subsets of ME/CFS patients. Increaseduse of instruments like MRI, SPECT/SPET, PET and fMRI showsome of the abnormalities in functioning that patients withME/CFS experience on a daily basis but these may not havepractical application if a patient cannot have this testing done. Anumber of abnormalities with reduced responsiveness on fMRIis an essential feature of ME/CFS.Brain imaging shows that, amongst other abnormalities,ME/CFS patients have reduced blood flow to the brain(especially to areas that are involved in autonomic nervoussystem functioning and in sleep, concentration and pain,including the pre-frontal cortices, the anterior cingulate and thecerebellum); altered patterns of brain activation; reduced greymatter volume; altered serontonergic neurotransmission andreduced acetyl-carnitine uptake.A collaboration of researchers from Spain, Belgium andAustralia used SPET scanning to observe patterns of brainactivity; they found that the brain abnormalities correlated withabnormal immune results.Patients with ME/CFS require more brain regions to performtasks, ie. they have to work harder to achieve the same resultsas healthy controls.One particular area of the brain - the Wernicke area, essentialfor understanding and formulating coherent speech-showedevidence of reduced activity after exercise.Proton resonance spectroscopy showed greatly increasedlevels of brain metabolites (lactate levels were 300% higher thanin controls).According to Dr Tae Park from South Korea, the unexplainedbright spots on MRI scans of some ME/CFS patients areevidence of an "arteriolar vasculopathy" or a blood vesseldisease. He believes ME/CFS is a "systemic micro-vascularinflammatory process" - a process that would affect not only thebrain or the heart or the muscles, but potentially every organsystem in the body. Dr Park found not only capillary inflammationand perivascular cuffing (the accumulation of immune cells thatsurround injured blood vessels), but that all the ME/CFS patientsin his study demonstrated remarkably reduced renal blood flow.Dr Park noted that diabetics with renal vascular disease alsocomplain of profound fatigue.Dr Hiro Kuratsune from Japan gave a summary of what is knownabout brain function in ME/CFS. It has been known for over adecade that frontal and temporal lobe blood flow is reduced inME/CFS, and that exercise exacerbates this reduced blood flowfor up to 72 hours. The new evidence is that elevated elastaseand RNase-L levels correlate with reduced blood flow. It isknown that the MRI is abnormal in the majority of people withME/CFS due to numerous T2 weighted hypertintense foci, withevidence of demyelination.Patients with more brain abnormalities tend to be morephysically impaired.The remarkable similarity in the brain images of patients withME/CFS and multiple sclerosis was noted."
    taniaaust1 2267 Replies Flag this Response
  • It isknown that the MRI is abnormal in the majority of people withME/CFS due to numerous T2 weighted hypertintense foci, withevidence of demyelination. Posted that part again in cause you missed it in that long post I did with the cut and pasted info in it. I think it matches your MRI. (I took that long part I cut and pasted from a large page on evidence based tests which can be used to support a given CFS/ME diagnoses). note..the CDC isnt up with CFS/ME studies and the various abnormalities which are common in CFS/ME and commonly found by ones studying this illness. So hence their info much lacks). Another test which is abnormal very often in CFS/ME (70% upwards of CFS/ME patients, have this abnormality). is the Romberg's test. The procedure for it is at http://en.wikipedia.org/wiki/Romberg%27s_test so you can test yourself if you are abnormal with that too. (other illnesses also have postive Romberg's sign.. but CFS/ME is the only illness i know with the MRI like yours). Take care.. if you do have CFS/ME.. pushing yourself may throw you into a much worst health state then you are at now. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf Has a lot of good info on CFS/ME
    taniaaust1 2267 Replies Flag this Response
  • I'm a 23 year old female. About 5-6 years ago I started feeling tired all the time. I went to my dr and of course had all the psych evaluations and was tested for mono and thyroid function. They decided I was depressed and anxious and so I've been treated for depression and anxiety this whole time. I've tried multiple antidepressants and it never seems to help the fatigue. It's slowly getting worse. The last couple of years I've been so tired that I developed neurological symptoms as well. I'm off balance and feel like I might fall going down stairs or down slopes. I mix up words, and can't think of other words. Also, I work as a patient rep at a dr's office, and when I take down patient's numbers I have trouble making my hand write down what my brain hears. Hi there,I wonder if you've been investigated for fibromyalgia? The symptoms sound pretty similar to mine - i'm a 29 year old female with a 5-year history of chronic fatigue, sporadic pains and aches and an earlier history of mono too. Your cognitive symptoms might be what they call 'fibro fog' - lots of info online about that if you want to check it out and see if that fits. I spent almost 2 years being investigated for everything under the sun with most tests coming back negative or ambiguous. Eventually, a rheumatologist said I have fibromyalgia. A big relief, as I feared an autoimmune disease or something progressive. My mother has also been diagnosed with it, so there may be hereditary links, given your own story too. It's very similar to CFS/ME and treat and treatment approaches are basically the same. Hope this helps!
    dkg100 1 Replies Flag this Response
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