Discussions By Condition: I cannot get a diagnosis.

Doctors say I'm a freak! HELP!

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: historychick
  • June 13, 2007
  • 01:15 AM

My doctors tell me I'm a freak case. Can anyone suggest ANYTHING?

I have LOW ACTH plasma (-5) and normal cortisol levels around 14.

Pain in left side under ribcage
Reynauds syndrome (cold hands/feet)
Frequent, Intermittent fevers of 99.4-100 degrees (daily basis)
Excessive sweating (even just walking to the mailbox!)
Night Sweats
Nausea
Headaches
Joint aches
Dizziness
Weight gain
Severe Fatigue
Chest tightness (kind of feels like when I had pneumonia but comes & goes)

I have had numerous tests done and all are fine! The doctors have ruled out MS, lupus, lymphoma, leukemia, rheumatoid Arthritis and cushings.

I thought about Addisons but I have LOW ACTH, not high!

Here are the tests that I have had:

Full body CT scan -found enlarged chest lymph nodes but docs say okay
Chest x-rays
Heart cath-said heart is super
Numerous blood tests-docs say all ok except for ACTH is low
Head MRI-all okay
Pelvic ultrasound-all okay
Hormone count and CBC-all okay
Was told I have high epstein barr levels...from a "previous" infection

I do have asthma, allergies and mitral valve prolapse.

I have been misdiagnosed previously with Fibroymyalgia and depression but anti-depressants did nothing so they took me off of them. I am not generally depresssed except when I am feeling bad physically.
All the doctors tell me I am absolutely fine..but I feel like I'm dead already. Anybody have suggestions at all? Could it be a lung problem?

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10 Replies:

  • Look into Chronic Fatigue Immune Dysfunction. Stick around in the forum. There is a lot of info here to help you.
    Anonymous 42789 Replies Flag this Response
  • Have you had a Lyme test? Have you had your thyroid tested? Are you anemic? Have you had your blood sugar tested (for Diabetes)? Your symptoms sound like a variety of different things, but it sounds like a lot of them have been ruled out, which is a good thing. :)
    sylvie 31 Replies Flag this Response
  • My doctors tell me I'm a freak case. Can anyone suggest ANYTHING?I have LOW ACTH plasma (-5) and normal cortisol levels around 14. Pain in left side under ribcageReynauds syndrome (cold hands/feet)Frequent, Intermittent fevers of 99.4-100 degrees (daily basis)Excessive sweating (even just walking to the mailbox!)Night SweatsNauseaHeadachesJoint achesDizzinessWeight gainSevere FatigueChest tightness (kind of feels like when I had pneumonia but comes & goes)I have had numerous tests done and all are fine! The doctors have ruled out MS, lupus, lymphoma, leukemia, rheumatoid Arthritis and cushings.I thought about Addisons but I have LOW ACTH, not high!Here are the tests that I have had:Full body CT scan -found enlarged chest lymph nodes but docs say okayChest x-raysHeart cath-said heart is superNumerous blood tests-docs say all ok except for ACTH is lowHead MRI-all okayPelvic ultrasound-all okayHormone count and CBC-all okayWas told I have high epstein barr levels...from a "previous" infectionI do have asthma, allergies and mitral valve prolapse.I have been misdiagnosed previously with Fibroymyalgia and depression but anti-depressants did nothing so they took me off of them. I am not generally depresssed except when I am feeling bad physically. All the doctors tell me I am absolutely fine..but I feel like I'm dead already. Anybody have suggestions at all? Could it be a lung problem?Please read on Chronic Fatigue Syndrome and NAET, Reiki, Oriental Medicine.Read my post "Things to do if you are desperate".Best.Fruity.
    Eatafruit78 960 Replies Flag this Response
  • Is this " from a "previous" infection " in the chest area?I saw a case where it was pleuresy caused by a atypical bacteria.
    Anonymous 42789 Replies Flag this Response
  • They have ruled out anemia, and thyroid too. I don't know if they tested for lyme or not but I can ask. THANKS!
    historychick 3 Replies Flag this Response
  • Sub-clinical gluten intolerance causes a wide range of heart problems.....I have some heart problem though I haven't been diagnosed yet just keep showing abnormal EKG's/abnormal heart rate. Propbably will push for a heart diagnosis later. Rather hate docs at this point though. Another thing you need to be made aware of is that I have pretty much all of your sysmptoms and they figured out (the functional clinic I started going too 3 months ago) that I have heavy metal toxicity. I have actual lab reports that show a heck of a lot of elevated metals in my urine and stool after chelation (blood tests don't always show metal toxicity...chelation is the process of the metals being pulled out of tissues and binding to the chelater stuff and getting pulled out of body. What gets pulled out of body is then checked to see what levels..... Had some even extremely high elevated.......and heck I've been sick since 2002 ...had a heck of a lot of tests....went to a lot of docs......got little results until I took the intiative (after being completley and utterly fed up with docs) and started testing myself for everything. There are online lab tests you can buy and send off.....others you buy and then go into their lab places and give the blood there. Think someone mentioned heavy metal and I thought it was just mercury.....didn't think my water had metals either since I live out in the country......country well water is likely the most likely to be contaminated....especially by the places that are likely to have rich deposits of oil or natural gas. Anyway, it may not be in your case that you have heavy metal toxicity...or gluten intolerance.....but you may want to add it to your list. Gluten Intolerance needs to be checked by a stool samples....there are 3 good labs.....in the country that check it good. Go to a gluten forum to get info. They seem to know more than all the docs put together in america...he....he...he Heavy Metal toxicity I don't know too much about yet....but I can see the need to be checked by people that know it good.....and not just do an expensive blood test cause it may be stuck mostly to the tissues/organs/muscles......which could be causing your fatigue.......very extreme fatigue..... Anyway, keep checking off things off your list.....eventually you'll turn up something that may lead to something else......am still checking for other issues in my case.....
    hawksley 3 Replies Flag this Response
  • They probably wouldn't have thought of Lyme, and you probably would have known if they tested you for it. I would ask. Just beware that the basic lyme test most doctors give is often not reliable. :( For $95, your doctor can have one vial of blood drawn and have it sent to the Igenex Lab in Palo Alto, CA. That lab is most reliable for any tick-bourne illness. I would suggest going to this website, and at least looking at the symptom list to see if this sounds at all familiar. Especially if you're not willing to spend the $95. :) http://www.canlyme.com/patsymptoms.htmlAlso, this link is a check list for symptoms, which suggests possible autoimmune disorders based on symptoms: http://thyroid.about.com/cs/endocrinology/l/blchecklist.htmAlso, were you tested for Celiac Disease?
    sylvie 31 Replies Flag this Response
  • I am definitely going to check out the celiac, gluten,graves and heavy metal ideas! Thanks so much!Yes...about the chest infection..I have had pnuemonia many times. I believe my chest pains when they were so severe where definitely pleurisy...I just don't know what triggers it and why it comes and goes. Thank you everyone for your great ideas! I hadn't really thought of any of these things!
    historychick 3 Replies Flag this Response
  • Has your blood calcium level been checked. Look up hyperparathyroidism.
    rad-skw 1605 Replies Flag this Response
  • Have you been checked for a tumor on your adreneline glands? It's called Pheochromocytomas. Julie
    cypheridge 1 Replies Flag this Response
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