Undiagnosed Symptoms Community
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Avatar universal

1 year and I am frustrated.............

I don't even know where to begin.  I guess I can say the first symptom was EXTREME fatigue.  I had to drag myself out of bed even after 9-10 hours of sleep.  I am very happy with my life and knew it was not depression.  So, then came pain...............not horrible but some days my shins hurt, most days my feet hurt, etc.  Now I am finding my head is hurting all the time.  I have also had a few cases of memory loss for a minute or two (such as forgetting my phone number).  Cat scan was done and dr said it is fine.  Blood results have been fairly consistent in that my ESR rates are always very high, CRP is high, alk phos is high.Rh has been positive sometimes and sometimes not.  latest thing that I have no idea if it is related is what feels to be water in my one ear.  Tiredness is getting even worse.............

Any ideas on how I can try to point my dr in the right direction?

Frustrated and hate complaining..............
3 Responses
Avatar universal
Wow apart from the pain you are experiencing I have had the very same symptoms. I fully understand the extreme fatigue and my blood tests also showed high ESR rates. I have had CT scans on my head, chest and throat and all came back normal. I've had xrays on my chest and these were also normal. I spent most of November last year in bed due to fatigue and feeling like I was going to faint or fall over when I did get up and the doc put that down to a viral infection. I think it was just better to call it that because nothing else was showing up in all the tests. I'm starting to wonder if I have an auto-immune disease and am seeing the doc on Monday to see if we should take this further. I had glandular fever about 4 years ago and have had health issues ever since. Hope this helps you some and that you are feeling better soon.
875426 tn?1325532016
ESR indirectly measures inflammation in the body and CRP that's high tells of acute inflammation and is associated with a higher risk for cardiovascular incidents like heart attack and stroke.  Evidently docs like to treat with statins to reduce the risk of such events when the CRP is high.  

Alkaline phosphatase, according to lab tests online's website, is used in helping detect bone disorders or liver disease and is frequently used to detect blocked bile ducts (levels would be high).  ALP can also help detect cancer that has spread to the bones or Paget's disease or vitamin D deficiency.

If the doctor is unsure whether your high alkaline phosphatase is due to your liver or your bones, the site says ALP isoenzyme tests can help determine the cause. The doc might also run a GGT test and/or a test for 5'-nucleotidase to tell the difference between bone and liver disease. GGT and 5'-nucleotidase levels are elevated in liver disease but they are not increased with bone disorders.

Fatigue can come with liver involvement, but there are other symptoms you didn't list.  With a bone disorder, bone pain, joint pain, and deformed bones or increased fractures can be symptoms.  

When they did the cat scan- did they use contrast?  The water on the ear feeling reminds me of the movie the Miracle of the Cards where a boy had a tumor in his brain.  It also makes me think of cerebrospinal fluid and wonder if it is increased in your head.  Also, have you had any of your endocrine hormones measured such as cortisol, growth hormone, or TSH?  If you had a pituitary tumor, it often doesn't show up unless done right with a specially dedicated (not just general brain scan) dynamic MRI of the gland with and without contrast.  

Is your potassium in normal range? (low potassium can cause muscle cramps)
Is your iron and ferritin normal, or have you had it measured?  Low iron & iron stores (ferritin), even if a CBC came out normal, could be a cause of being very fatigued and low energy.  (experience)

Avatar universal
Thank you kiareri and SurgiMenopause.  I really appreciate the detailed responses.

My Ct scan did not involve any dye.  They did do one on my liver/abd. with dye as intitially they saw something on a ultrasound but they told me it was nothing after doing the scan.  

My iron is normal but I am not sure about potassium but I have wrote that down to ask the next time I am in.

My drs feel it is something autoimmune but told me they can not pin it down as I do not have any tell tale signs such as a butterly rash for lupus.  I actually would rather hope it is something in this field compared to liver or tumours!!!

So thank you!  

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