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Undiagnosed Forum
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March 13, 2010, 08:08:41 PM
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Topic: How do you not just give up? (Read 1316 times)
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Topic: How do you not just give up?(Read 1316 times)
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Samantha
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« Reply #31 on: October 04, 2009, 09:29:58 PM » |
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Thank god your Migraine's finally gone and you received some help  Are they planning on follow up after raised ESR levels ??? I hope you're feeling a little better now Keilia  Sammy |
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Topic: How do you not just give up?(Read 1316 times)
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Keilia
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Told You It Was Not All In My Head!
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« Reply #32 on: October 04, 2009, 09:43:22 PM » |
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My doc could care less about the ESR. I am taking it with me to the new Rheumy on Oct 12. I have a headache again, but now I can take these prescription meds before it gets severe and they SHOULD work. Lets hope! |
~Keilia~
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Topic: How do you not just give up?(Read 1316 times)
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New28
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When all else fails, play dead!
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« Reply #33 on: October 05, 2009, 06:31:42 AM » |
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I'm glad your migraine's gone, feels like it lasts forever doesn't it?
Isn't a high SED dangerous? Your doc is just jealous it wasn't noticed before...Almost all doctors have god-sized-egos, you can't blame them.
Sed rates don't change very quickly, which makes me wonder why your doc didn't pick it up, or didn't see something wasn't right.
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Topic: How do you not just give up?(Read 1316 times)
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Keilia
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Told You It Was Not All In My Head!
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« Reply #34 on: October 05, 2009, 10:40:04 AM » |
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Headache came back after two hours. UGH it hurts bad! *cry* I have no idea why it was never brought up before. I have been begging that doc to look at it for MONTHS. I knew it was high when I had pneumonia, but I was told it was cause of the pneumonia. Yes, it is dangerous - not the SED rate itself (I don't think) but the inflammation it is measuring is very dangerous, Depending on where it is, (and its obviously partially in my brains) it can cause strokes, heart attacks, blood clots... I do not know why they still wont check my c-reactive protein which would be VERY helpful in diagnosis as well. They also already know that my ANA is positive, but no one will tell me the pattern - which is very helpful in a diagnosis. I know physicians are reluctant to hand out autoimmune diagnosis cause they can cause issues with insurance - but the longer I am not treated and the longer they act like I am an idiot, the sicker and more angry I become, which doesn't help at all. I am calling my doc back this morning as soon as his office opens. Even though I started the Prednisone and re started the butalbitol as instructed per the ER doc, I am in SUCH pain. And sitting here taking barbituates long term is a VERY bad idea. Even though they do not make me high or low in the LEAST, they are supposedly addictive. I am already very addicted to ciggies, so I do not need another addiction. Also, with a high sed rate, even though I am only 34, with this headache they SHOULD be checking me for giant cell (temporal) arteritis. That condition is NORMALLY only in older people, but it also happens, usually to women, who have autoimmune conditions.     |
~Keilia~
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Topic: How do you not just give up?(Read 1316 times)
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Keilia
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« Reply #35 on: October 05, 2009, 10:56:28 AM » |
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Oh, and yeah, my doc does have a HUGE ego!~ It is insane! I swear, if I mention what omething is -- even from a previous diagnosis by a different doctor - even a different doc in his own practice - he gets very upset and insists it is not what it is. I mean come on? Like he tried to tell me this was NOT IN ANY WAY POSSIBLE a migraine since it lasted longer than 72 hours...while I agree that it *might* be something more serious, it is a WELL established fact that migraines can and do last longer than 72 hours. It's called a status migraine. But of course I am just a Mom, I am not a doctor, and my other doc in that practice (who wasnt there for me to see, but it just as difficult to deal with anyway) had also diagnosed it as a migraine just a couple days before. <pulls hair out>
Oct 12 is fast approaching! A week from today, YAY! I am scared to get my hopes up for the new doc - but she is supposedly the best, and handles hard to diagnose conditions - so I have high hopes, whether I want them or not.
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~Keilia~
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Topic: How do you not just give up?(Read 1316 times)
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Keilia
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Told You It Was Not All In My Head!
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« Reply #36 on: October 05, 2009, 11:08:15 AM » |
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Also - props to the ER doc - He did take the sed rate seriously, its why they gave me IV steroid (which the one they gave me HURT OMG!) and put me on prednisone.
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~Keilia~
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Topic: How do you not just give up?(Read 1316 times)
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Keilia
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Told You It Was Not All In My Head!
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« Reply #37 on: October 05, 2009, 11:12:19 AM » |
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One bad thing though - If I DO have scleroderma, and it is just not yet diagnosed....
Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma.
I did not find this out til late last night - so I will be brining it up to the doc.
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~Keilia~
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Topic: How do you not just give up?(Read 1316 times)
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New28
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When all else fails, play dead!
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« Reply #38 on: October 11, 2009, 05:58:16 AM » |
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WHY is this doc so stupid? It's starting to annoy me too.
Pile up all the evidence right in front of him and ask why, ask why does he refuse to test other ideas when he doesn't know the answer? Tell him you'll let him claim all the credit if a diagnosis is found, you'll be happy with a diagnosis.
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Topic: How do you not just give up?(Read 1316 times)
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Keilia
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Told You It Was Not All In My Head!
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« Reply #39 on: October 11, 2009, 06:50:05 PM » |
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Thats why I am seeing new doc tomorrow. I am sick of his pig headedness even when I show him all of my research and he wont even test. I dont need that and I am not wasting my money on seeing him ever again. The new doc comes very HIGHLY recommended. Lets hope she is worth it! |
~Keilia~
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Topic: How do you not just give up?(Read 1316 times)
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New28
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When all else fails, play dead!
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« Reply #40 on: October 12, 2009, 06:49:04 AM » |
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Keep us updated Keilia!
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Topic: How do you not just give up?(Read 1316 times)
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Samantha
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« Reply #41 on: October 12, 2009, 07:32:24 PM » |
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Best of luck Keilia |
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Topic: How do you not just give up?(Read 1316 times)
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Keilia
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Told You It Was Not All In My Head!
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« Reply #42 on: October 12, 2009, 08:35:49 PM » |
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Had a GREAT doctor visit! Apparently my reflexes are far stronger than they should be. I dunno what that means, though. She also told me what the red mottling on my palms is, but I can't remember the name of it right now. She is testing my thyroid and liver, but is "pretty sure" I have Undifferentiated Connective Tissue Disorder - meaning I have symptoms of several autoimmune diseases but it is not yet morphed into one disease. I may have a diagnosis....I can only hope..... Oh, and I do NOT NOT NOT have fibromyalgia, and she ws not pleased I was diagnosed with it. She specializes in Fibro and says when docs use it as a trash can diagnoosis it makes diagnosing others with it more difficult. I had ZERO of the pain pressure points associated with it. So, they took every bodily fluid tthey could, and I am at home now. Crossing my fingers and praying for a diagnosis. Her nurse practicioner says that Dr Rominick is a very good diagnostiician and that if anyone can find out whats wrong with me that she can.  |
~Keilia~
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Topic: How do you not just give up?(Read 1316 times)
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Samantha
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« Reply #43 on: October 13, 2009, 12:16:45 AM » |
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Good stuff Keilia Rare these days to have a good visit  sounds like some help might be on the way Fingers, toes, legs everything crossed something positive happens with this new Doctor Sammy |
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Topic: How do you not just give up?(Read 1316 times)
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New28
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When all else fails, play dead!
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« Reply #44 on: October 13, 2009, 03:12:33 AM » |
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Oh my Keilia! This is wonderful! She sounds like she's taking in all your symptoms. It truly ISN'T all in your head, and now you have a doctor believing it too. I am so happy for you, kinda disappointed in myself for not sticking it out like you have...You've started the journey!
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