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Old 07-18-2012, 09:57 AM   #106
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Re: Invisible illness, very sick.

Totally understand your frustration. Just have to keep trying to find a doctor that will help but also try figuring out what u can do for yourself. That's what I am still doing. Very frustrating. Currently having four day mibg test looking for adrenalin tumor. Probably wont find anything but hoping.. like everyone else just want answers!

 
Old 07-18-2012, 03:33 PM   #107
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Re: Invisible illness, very sick.

stressedtomax,

At least you are getting a good test done. I've been to all kinds of doctors and they all say "I think there's something going on" but that's as far as they make it. I've been able to manage my symptoms a little bit but when I am stressed out my symptoms get worse. This is so frustrating!! Please let me know what they find on your test!!! Good luck!

 
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Old 07-18-2012, 05:16 PM   #108
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Re: Invisible illness, very sick.

Hey Mojo-
Haven't posted in here in a while. But I'm back in the same boat, have been for the last two months. I was made to go off thyroid meds again because I "don't need" it. My neighbor suggested I see an immunologist (she is a former immunologist) because she claims that they focus on root causes instead of symptoms. I have an appnt early tomorrow morning. I visited some family over the weekend and even my Aunt (who is a nurse) was saying to not be discouraged. She told me don't feel like your wasting your time or crazy and to keep going until you find a doctor that listens. I figure if a nurse is even saying doctors overall don't listen...Anyway, if I learn anything at the immunologist, I will post on here.

 
Old 07-18-2012, 05:46 PM   #109
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Re: Invisible illness, very sick.

Sillygal,

I've been told the same by a friend of mine who went through the same problem and his was an autoinmune disorder. I think you are heading the right direction now. My PCM won't give me a referal to see one. This is a nightmare but someday we will wake up. Good luck with your doctor and please let me know what they say to you.

 
Old 07-21-2012, 06:27 PM   #110
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Re: Invisible illness, very sick.

Quote:
Originally Posted by Mojo37 View Post
Sillygal,

I've been told the same by a friend of mine who went through the same problem and his was an autoinmune disorder. I think you are heading the right direction now. My PCM won't give me a referal to see one. This is a nightmare but someday we will wake up. Good luck with your doctor and please let me know what they say to you.
I think it might be autoimmune too. But my labs are "perfect" now and the one time I tested positive for autoimmune was ignored when the test after it came back normal. Anyway, I got back some test results and everything was good except for my parathyroid hormone levels and my creatinine levels. My parathyroid levels were a 4 L (Range 10-65) and my creatinine was 1.15 H (don't remember the range). So now my primary thinks I have something called hypoparathyroidism. I guess I'll be getting some more testing to see if I actually have this or if the test was a fluke. Apparently, this is an extremely rare disease so we'll see how this goes and how my doctors approach it or if they just ignore the results as a a fluke. Ironically, I was the one who bugged my doctor to let me get this checked because of the research I've been doing. I'm going to have a hearty laugh if it turns out I diagnosed myself.

 
Old 07-22-2012, 04:58 PM   #111
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Re: Invisible illness, very sick.

Sillygal,

I am very glad to hear you are finally making some progress!!!! Doctors get so mad when you tell them that you've been reading and doing some research based on your symptoms!! I know for a fact that if my doctor's would've listen to me I would've been diagnosed already and feeling much better by now. Keep me posted on your progress. I have another appointment on wednesday. Let's see what they say to me. I'm going to call you Dr. Sillygal from now on if you actually diagnosed yourself!!!!

 
Old 07-23-2012, 12:17 PM   #112
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Re: Invisible illness, very sick.

Sorry to hear you guys are still having a rough time. Mayo diagnosied me with Adult onset still's and after dealing with some difficult times and getting the right medication, and returning to 100%. The medication kicks my ***, but i only have to take it once a week. All of my signs and symptoms have just about disappeared, dealing with some very painful enlarged lymph nodes in my neck right now, but I've been back to work for 2 weeks after being off since Mar!! I feel like a new person..Mojo get your butt to Mayo, its about time you and your kids get out in the woods soon!!!

 
Old 07-23-2012, 12:54 PM   #113
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Re: Invisible illness, very sick.

It would be inetersting to look at your calcium and phosphorus levels. They go opposite each other, and calcium should be low (can cause muscle spasms and "charliehorses") and phosphorus should be high. They may just be borderline or really out of whack. You now have one piece of puzzle!

 
Old 07-23-2012, 01:20 PM   #114
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Re: Invisible illness, very sick.

Mojo, after reading your first ever post in this thread, and now knowing about the hypoparathyoidism, I wonder if you have been checked for pheochromocytoma. It is a tiny tumor in adrenal glands that intermittently secretes excess adrenaline that causes surges of high blood pressure, tachycardia, sometimes flushing and headches with those episodes. It is your flight or flight hormone pouring into your system. It doesn't show up on ANY routine tests, not even the usual adrenal tests. It is usually diagnosed with a urine for catecholamines or VMA. There is also a condition called multiple endocrine neoplasia (MEN)that involves small benign tumors of more than 1 endocrine gland, which can cause hyper OR hypofunction of those glands. Examples include pituitary, thyroid, parathyroid, adrenals (both areas) ,pancreas, testicles, and often cause a myriad of confusing symptoms because of all the hormone malfunctions. An Endocrinologist might be interested in checking that out. MRIs are done to look for tumors in the glands that exhibit abnormal hormone levels. A pituitary panel on blood work would be a good place to start, but an endo is needed for these other things. Also, have you had any positive autoimmune test results at all? Much of your problem could be explained by an autoimmune disease. Also, have you had muscle enzymes tested-CK and aldolase? Antithyroid antibodies? I would like to post with you privately, but being new, am not sure how to do that.

Last edited by ladybud; 07-23-2012 at 01:48 PM. Reason: added some things

 
Old 07-23-2012, 05:42 PM   #115
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Re: Invisible illness, very sick.

Justwannahunt,

What a great surprise!!! I'm glad you are doing well and finally have a diagnosis! What in the world did you have? I'm still struggling but if I have powerade and tylenol PM I'm good to go. My doctors are still looking but they are just looking at the wrong stuff. At least I can "control" my symptoms. I've been fishing with my boys and having a good time. Somedays are worse than other but I feel better overall (knock on wood). My problems look like autoinmune or at least part of them. I am so glad you are doing well!!

Ladybug,

I've told my doctors to look at that but they won't listen. They did a 24hr cortisol test and my cortisol levels came back off the charts but believe it or not, I am "skin and bones". The gastro said that my cortisol levels are not normal (duh!!!) and that my primary needs to look more into it but my primary only did an ACTH stim test and said that it came back normal. I really have no clue of what the problem is but I will keep bugging the doctors until they either find the problem or send me to Mayo.

 
Old 07-23-2012, 06:28 PM   #116
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Re: Invisible illness, very sick.

still's disease..auto immune- pretty rare apparently. Have to take one of medications for the rest of my life, and hopefully ween off the prednisone in the next 6 weeks. but all in all...1000 times better. was doing much better then got really sick again in the end of may before improving almost completely by the end of june. once on the right medication I had an immediate turn around, pretty amazing...Dr Michet at Mayo in rochester is the best!!!

 
Old 07-24-2012, 09:56 AM   #117
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Re: Invisible illness, very sick.

Never heard of it. I will be undiagnosed until my doctors realize that they don't know what they are looking at and send me to Mayo.

 
Old 07-24-2012, 10:22 AM   #118
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Re: Invisible illness, very sick.

Mojo,
You know you don't need a referral, unless your insurance requires it, to go to the Mayo Clinic. I like the one in Rochester. Your current thread is so long it is hard to read thru all the pages. Since I just caught on to your problems, could you post any and all ABNORMAL lab/test results you have had done already? I love to work on mystery cases and might be able to offer some help, if I had some clues to go by lab-wise. Also a list of tests that were done that were normal (no results needed, just to know test was done.)
Anything that is borderline on results are sometimes meaningful too, and Drs usually ignore borderline results, but I don't. It takes about 3 weeks to get into Mayo clinic, by the time they review all your med records, and figure out where they want you to start.

 
Old 07-24-2012, 11:02 AM   #119
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Re: Invisible illness, very sick.

ladybud,

I've had ACTH stim test, 24 hr. urine for cortisol, Lyme, parasites, ANA, etc. The only tests that came back abnormal were 24 hr. cortisol which came back extremely high (even though I am real skinny), low potasium, low vitamin D and anemic. I was anemic for a little while but my iron levels, ferritin, etc were normal. Other than that everything comes back normal.

 
Old 07-25-2012, 07:58 AM   #120
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Re: Invisible illness, very sick.

Do you have hard copies of your labs or actual results available? I always like to get them, as Drs offices are notorious for telling patients their results are fine when they are, in fact, not, and they either don't want to worry the patient or don't know what it means, how to deal with it, what to do next, etc. I would be particularly interested in your high cortisol levels and your exact ANA result. An ACTH stim test is to rule out Addison's or hypoadrenalism, and that sounds the opposite of what you might have. The low potassium is probably due nto the high cortisol, as cortisol causes sodium retention and potassium loss. Are you on a potassium supplement? How low did that go? Low potassium can cause significant muscle weakness and fatigue. It seems a reason for the high cortisol should be sought with a CT or MRI of adrenal glands looking for hyperplasia or an adenoma (small benign tumor secreting excess cortisol). Do you have any symptoms of Cushings syndrome? Being skinny is not one of them! Have you been checked for hyperthyroidism, which can cause weight loss and significant fatigue? Cushings (excess cortisol) can cause diabetes, which can cause weight loss and fatigue, with increased thirst and urination. You didn't mention blood sugar levels in your labs.

 
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