View Full Version : Feel Like A Cat Being Put In Water
09-13-2012, 05:59 PM
So, I tested positive with a Nucleolar pattern 1 1/2 years ago. All other tests were negative. I have had IBS since I was a kid (the minute they said going to the Dr I had the runs). I have OCD of health issues so to say I have anxiety is being mild. I have had a severe IBS attack for several months and if I calmed down it would stop but hey calming down isn't in my control too often during the attacks I always get nauseous and don't eat alot plus nerves make my desire for food disappear. I went for bloodwork and I came back with low phosphate which is a electrolyte and my c3c was low and C4 wasn't low but WAY lower than before and almost considered low by two points. Dr's said low phosphate was because wasn't eating enough. Then I read that C3 and C4 can be low due to malnutrition. The only symptoms I have of any auto immune issues is what I think is Raynauds ( top rheumy disagrees due to lack of full color change) and I had blood and protein in urine but I had my period and when I went back a week later it was normal. I don't have joint aches or skin issues nor photosensitviity. My problem is every twitch, gas pain, gurgle etc.. I think it's lupus and I am going to drop dead. This is horrible and depressing to say the least.
09-13-2012, 06:28 PM
Aw, Jill, I know that has to be hard! Since I've had this autoimmune disease (as yet without a name, doctors are calling it definitely autoimmune, and that's about all I know) enter my life, I've had feelings like that, too, where I notice something strange and then I start to think about it more, and more, and more. And so then I go research whatever is bugging me. And that invariably teaches me about some new symptoms that could be indicative of whatever disease, and then I'll start to notice something new... It's not a good cycle to be in. And I know it has to be ten times worse when you have health anxiety.
So, just from an objective perspective here, it sounds like the doctors came up with a plausible explanation for the abnormal blood tests, and that you don't have anything else going on besides that old positive ANA. I want to share something with you from the American College of Rheumatology about the ANA test (from http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/ana.asp):
Only about 11-13% of persons with a positive ANA test have lupus and up to 15% of completely healthy people have a positive ANA test. Thus a positive ANA test does not automatically translate into a diagnosis of lupus or any autoimmune or connective tissue disease.
So it is completely likely you do not have lupus, even with a positive ANA, since you don't have many of the telltale symptoms.
But back to the health anxiety. Health anxiety is a real thing, and it is not to be dismissed or taken lightly, though some doctors will shrug it off. I want to share with you a story. I see a chronic illness counselor, who helps me deal with the emotional and psychological impact of a frustrating, painful, undiagnosed condition. One day I told her that I felt like I was crazy, that I was focusing -- obsessing even -- over the tiniest symptoms or twinges. And she told me that is not uncommon when you're surrounded by the medical field and researching conditions all the time, like I was.
She told me a story about a former client of hers, a completely physically healthy ICU nurse who suffered disabling health anxiety. This nurse spent most of her time around the sickest of the sick, and she started to believe that she, too, had some sort of terrible illness, just lurking, waiting to kill her if she didn't get it caught. This nurse used her access to the health care system and the fact that because she was a nurse, everyone took her seriously about health issues, to have who knows how many scans and tests and consults-- few, if any, of which were really warranted. But she still had a very real problem, that affected her just as profoundly as many physical illnesses can: her health anxiety.
So, this nurse started seeing a chronic illness counselor -- though any sort of counselor or therapist who specializes in health-related issues would do -- and she was able to talk through her worries about her health without fear of being judged, and she was also able to have someone familiar with her situation there to help her figure out when something she was worried about was her anxiety flaring up or when she may actually need to see a doctor.
It sounds like you're very stressed about your health right now, and stress like that is never good for you, and it is probably wreaking havoc on your IBS. If there's any way to find someone like a counselor or therapist to discuss your anxiety with, I really think you'd find some good in it. A counselor who specializes in health issues could definitely help you manage your anxiety and help you keep track of when a symptom warrants seeing a doctor.
Lots of hugs to you, Jill-- it sounds like you're dealing with hell right now, and it sounds like it sucks!
09-13-2012, 06:35 PM
Its tough to have symptoms but no answers!
I can relate to your comment about worrying about every pain and twitch and not know whats going on or whats going to happen next!
I went for my regular ruhemy appointment feeling pretty good only to be told my labs looked bad. lupus is doing something I just don't know what!
Take Care! Niall
09-13-2012, 09:10 PM
......... The only symptoms I have of any auto immune issues is what I think is Raynauds ( top rheumy disagrees due to lack of full color change) ........
i have confirmed raynauds.... and the medicine makes a world of difference for me...... but i do not have "full colour change".
unfortunatelly, some doctors whant every box ticked, or they are not satisfied.
my raynauds is a side effect of my lupus. so it is a secondary complaint, and usually secondary complaints manafest slightly different to primary complaints..... so no full colour change is normal.
sometimes we have to gently remind doctors.
"i was reading #### on the web"
"is it true that #####"
my doctors expect such questions from me.
it is my body.... and i want to know what is happenning to it.
09-13-2012, 09:56 PM
Just a quick note to say that I agree with Derrie about the stress! Stress itself is underrated as a killer! Find someone to talk to like Derrie suggests! I am very lucky to have a good wife who not only listens, but researches! I also have 4 younger sisters who are nurses! Even though I may not always agree with them, it does a lot of good to run the new stuff by them! Roger
09-15-2012, 10:41 PM
It is a tough road to finding an accurate diagnosis and it is emotionally and physically exhausting. I understand the pain and frustration and the anxiety does not make it any better. Have you spoken to your doctor about anxiety medication? A few years ago my mama had four brain aneurysms rupture and we had to put her on life support for some time. She is fine now but during that time I could not even work and felt paralyzed to drive due to anxiety. The doctor really listened to me and had me on something that worked ina just a few weeks. It has made a world of a difference in my life. If they suspect autoimmune I am sorry to report my friend but you will be seeing a lot of doctors and anxiety could possibly scue some of the tests. Hopefully finding us will allow you to receive some support from those of us who have traveled this windy and bumpy road of being diagnosed!!! Welcome and please keep expressing yourself to us and talk to us about your anxiety at anytime......you never know, it may help:-)
As was said before me most people with positive ANA don't have Lupus. having said that let me also say that most people with Lupus don't just "drop dead" anymore. There are medicines that are used to keep the inflammation down and to keep our bodies working to fight the disease. Lupus is no longer a death sentence so please try and relax. "Don't borrow trouble" was what my mom said. It means to freak out about things that haven't happened yet. Just take a few deep breathes and relax. We are here for you
09-16-2012, 03:16 PM
Celiac diease is often misdiagnosed as IBS. Celiacs often joke that IBS is a doctor's way of saying "I Be Stumped". ;) Anyway, those with celiac disease end up with portions of their upper small intestine becoming damaged and as a result their ability to absorb vitamins and nutrients is compromised. Many celiacs have low iron, B12, D, calcium amongst other problems. They also have your "typical" wide variety of AI symptoms such as fatigues, migraines, sore body, skin rashes, thinning hair, and GI problems ranging from ulcers to nausea, constipation to the runs.
It might be something you could look into. The most sensitive and specific tests for celiac are ttg IgA and EMA, as well as an endoscopic biopsy. There are more blood tests that would comprise a complete celiac panel. Any GP could order it for you.
Good luck. i hope you find anwers and feel better soon.