You would think that when everyting comes back norm

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ladybug44r
Veteran Member


Date Joined Jul 2006
Total Posts : 831
   Posted 9/14/2007 8:05 AM (GMT -7)   
we that have pain and flares would be happy intsead I feel like crying and screaming. I know my words on here are spelled wrong and I can't remember how to spell them correctly right now.
 
I want to know why I hurt, I can't enjoy life like other people. I tell a nurse and a dr that I hurt all over and they tell me it's the flu. I have no fever not to them anyways being that yes I start my day at 97.5 but when I do just the little things it goes up. But when you go to dr or hospital and your temp is one degree below what they call norm. Your fine. I wanted last to scream at the dr and nurse that it's not the flu but of course I didn't instead I took the paper they gave me and through it in the trash.
 
Well we're not fine and even though my results came back normal and no blood work to show I have Lupus, as many on here know what I"m talking about, my body knows that I have something if not Lupus than I really wish someone could tell me what. My fingers move even when I"m sitting still, my body jumps in the middle of the night and I have no clue as to what that is. I want to know why one day I can remember everything I say and then the next I have to call a friend to find out my phone number, or recall my daughter because I can't remember whether I told her I loved her or not and then find out I did. Or have someone finish my sentences like I've had a storke. This is all so hard and so confusing.
 
One of the reason why I haven't gone back to my dr. she got a neg. on Lupus so what is she going to tell me that it's because one dr. put down that I"m bi-polar. Well anyone would have gone to a mental hospital when they learned that their ex husband and daughter were a couple. It was her step father and now her husband. That doesn't make me bi-polar just depressed as anyone would have been at the time but I've gotten over it.
 
Sorry for long rant. Hope everyone is having a good day and no pain.
 
Veronica

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 9/14/2007 8:48 AM (GMT -7)   
Don't be sorry for the rant. I would agree that everyone would have gone to MH when they were in yr situation. I would have been depressed too, if I were u. Don't be discouraged. Go find another doc and have a thorough blood work again, or discuss w/him/her abt yr symptoms. It takes a while to find a right doc that will listen to u. We all hv the same experiences.

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/14/2007 9:09 AM (GMT -7)   
Veronica--
I don't know what meds you take and what other problems you have disease wise, but what you are going through sounds much like what happened to me. I actually just started checking into the mental place because they had a doc there that would test me for some things and psych med was better than nothing. I'm not suggesting that to anyone, but I was driven to madness by pain and was afraid for myself if I didn't get tx.

Please don't get discouraged. I think the problem is that they are not running the right tests for you. My temperature is constantly low sometimes as low as 95 in the morning and has even been 96.5 or less during the day, and it feels like a bad fever and is not supposed to be good for you. As you become an adult, going down one degree is considered normal. The best measurement is taking your temp when you rise before you move, put the thermometer by the bed. That's the temp you need.

Next, you need to find a doc that might not be world class, famous or anything, but is humble and will listen to you and perform the tests you might suggest, since you know your body better than anyone. My thyroid is consistently within what most family docs and ERs call normal, but I've lost have my pigment and have other dramatic physical changes due to hypothyroidism, including nerve problems. They must measure your anti-thyroid antibodies in addition to your thyroid levels--these are called TPOs and Tgs and many many many people with hashimotos are euthyroid (normal TSH levels) but have TPOs in the hundreds, even thousands. There is another disease called hashimotos encephalopathy that others know more about but your thyroid can be normal but it presents like bipolar disorder,can cause seizures and all sorts of things and it is when your TPOs are very high--some people they are 10,000 (high normal is 60). I strongly urge you to get tested for this.

Also, if you have any skin issues, go to a dermatologist. They will often run more bloodwork and take you more seriously than anyone else. They have to rule out systemic disesaes before treating your skin, if you have a skin condition.

Also, if you are overweight, there is a condition called fatty liver which runs with ai disease, especially sjogrens, and it is a form of prediabetes. If you have people in your family with diabetes and you are or were overweight, this is something to check out. This can be done with an abdominal ulltrasound (like baby ultrasound) if your liver levels are out of whack, and definitely if you are overweight getting a blood insulin test is good, then a glucose tolerance test if it is abnormal.

When you have some of the other stuff dx, if you have them, then it's easier for them to believe that you may have some type of ai disesae going on, even if the labs aren't showing it right now. I know it's round about, but its like gathering circumstancial evidence when the smoking gun is missing.

I hope this helps and don't get discouraged. If you know in your heart that you have a problem, don't give up and don't just let them label you crazy. It doesn't mean you have to react to it. Just keep plodding away. A good psychiatrist can definitely order the thyroid bloodwork and should, since many people with high TPOs cannot take medicines like lithium, it nearly killed me. And checking blood insulin--make sure they test that and not just blood sugar or other diabetes tests they claim are better, they must check blood insulin, a very cheap test, can tell you if you are insulin resistant, which might cause AI disease or at least is very common for people that have it to also develop AI disease if the liver is involved.

Sorry so long. please take care and know that people here care about you and are rooting for you. If you have to, do what I do and say, "I'll stop bugging you if you just run these few tests...."
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


ladybug44r
Veteran Member


Date Joined Jul 2006
Total Posts : 831
   Posted 9/14/2007 10:02 AM (GMT -7)   
My dr ran a bunch of test when she was trying to rule out Lupus and with me not having insurance it is hard to get her to do some of the tests. She did do the tsh test and it was normal. I was really shocked last night when the em dr said my iron was fine I haven't had that fine in years.

I did find out that one of my aunts and her sin are dibetic stage 2.

Marji thank you. You have given me a few things to work on with my dr. but first I have got to work on getting me insurance because all the things you talked about arre costly.

Veronica

curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 9/14/2007 10:15 PM (GMT -7)   

Hi Veronica,

Don't give up. If you read past posts you will see it is common for most people to go for years and have several doctors before they are given a diagnosis. Many others have been told they are depressed or nutty, but they knew they weren't and they kept searching til they got answers. Lupus is an ever-changing, unpredictable disease and is difficult to DX. Document all your symptoms and keep looking for the right physician. Eventually answers will fall into place and no, you are not nuts. Remember, you know your body better than anyone else and if it's telling you something is wrong then there probably is. Keep trying and in the meantime we are always here for you.

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/16/2007 10:12 PM (GMT -7)   
Hi Veronica,
Just a quick note on the thyroid. TSH is not sufficient for diagnosing autoimmune thyroid issues, and the new range for it is under 3 or 3.25. You must get the TPOs tested, which should have been done with the TSH. If you go to free mental health at all, they should be able to test this as part of your regular blood work. I hope you can get some insurance or government coverage soon. Its so hard to go through this.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 9/17/2007 12:36 PM (GMT -7)   
"Mental problems" were my very first symptoms. Panic attack like episodes were the first things I experienced when I first was getting sick. Because of this and not knowing what was wrong with me, I did infact develop anxiety/panic disorder because I felt so out of control with myself. Of course, went to the pdocs and put on all types of meds because everything else was "fine." What's even harder is to have to tell your family that your doc doesn't believe you or that its all in your head. Nobody ever tested me for things like Lupus and I never thought to even pursue that route. When I finally got tested and started seeing tests come back positive than the approach was different but it was many years before that happened.

Also the hard thing too is that for many, the symptoms precede the test results. Many people can go for months, even years with symptoms before the "proof" comes out. I feel so bad for you because I know exactly how you feel.

Please know that we are here for you and always feel free to come here and vent and talk about your symptoms.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


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