View Full Version : Symptoms?!? What do they mean...
01-25-2009, 11:19 AM
I guess what confuses me most about whether I should just be comfortable with an "undifferentiated connective tissue disorder" diagnosis is that the symptoms could mean various things. When I first went to the doctor I gave him a list of my symptoms: (low grade fever, extreme fatigue, dizziness, confusion, memory loss, both irritability, palpitations, shortness of breath, nausea, muscle aches, abdominal pain, pain when swallowing, and headaches). What is scary is that I got the list from a web page stressing the dangers of aspartame. My concern is should I just be content with the diagnosis and WAIT for the medicine to take effect if it ever does or should I go to every possible doctor out there until my job fires me for missing so much work or until my husband actually thinks I'm insane.
The reason my rheumy is comfortable with the diagnosis is due to the blood work and the fact that I have some symptoms not all. I guess it's tiring at times. I sit here typing and wonder how some of the postings I'm reading seem to be coming from extremely calm human beings not completely combustible loons like I feel when I start thinking about what Iíve been going through.
I can't speak for anyone else, but I'm a completely combustible loon most of the time, I just hide it well! :lol: Seriously, the symptoms of Lupus are so diverse, and so different for each person, that there is no typical, or textbook case. I'm curious, Have you read the diagnositic criteria for Lupus? It's explained in detail in one of the "sticky" posts at the top of the forum. I wonder if your rheumo is aware of the criteria. I know it sounds rather ridiculous, but you would not believe just how little many people in the healthcare industry know about the disease. The ignorance is widespread, and shocking. Your best course of action on one front is to become an educated patient so you can be an advocate for yourself. It looks like you are well on your way to achieving that.
Your rheumo must believe you have some sort of autoimmune disorder, as you have been prescribed Plaquenil. Basically, Plaquenil is only prescribed as a disease modifying drug for people with autoimmune disorders such as Lupus, and it's also used to treat malaria. I'm assuming you haven't been to the jungles of Central America lately, so that kind of rules out malaria. As far as seeing as many Dr's or Specialists as possible, if you feel that's what's needed, then you have every right to pursue that course. If your job gives you a hard time about it, remind them that the ADA is there to protect people in your situation.
You mentioned in your other post that you have now been on Plaq. for 4 months. It can take up to 6 months to start working, and that's just about how long it took for me to notice any beneficial effects. I'd give the meds more time, but that does not mean you have to be idle and just wait. I would ask for 2nd and even 3rd opinions, and there's nothing wrong with seeking out various specialists in order to get the proper diagnosis.
01-25-2009, 12:22 PM
Thank you Rob,
Yes I am slowly learning of more about the disease and am trying to be as educated as possible. I am extremely familiar with the ADA and am not seriously concerned about losing my job, I just really don't want to be passed around like a hot potato all the tiem. I just would like an answer...I know silly me :crazyeyes: :) I am getting a second opinion on February 9th researched the best hospitals for rheumatology and best doctors. Found top 7 hospital and one of the top doctors. SO I guess I'll see what happens next actually in mid Feb it will be 6 months on Plaquenil.
02-01-2009, 02:38 PM
From reading some of your posts, it seems you and I have very similar situations! And feelings about the whole thing LOL! I sit and wonder sometimes if I'm a loony tune b/c I am having all this stuff and I am 32, I am YOUNG but feel much older! It's crazy!
I too have the UCTD diagnosis and was also placed on plaq b/c I don't tolerate steroids well. The plaq. was only for a few months though b/c I developed an allergic reaction (we think the plaq. was the problem but we are not 100% sure).
I hope we can come up with something! The thing is my doc is always telling me she really doesn't want to give me the diagnosis of lupus b/c its so serious an b/c I alreayd have a major disease, juvenile diabetes. While she is right, 100% its hard to say to myself well I have this this and this but its not this, or this, its this LOL...
I generally make it easy and explain it as lupus like RA type symptoms LOL. Yeah thats a mouthful too!
02-03-2009, 07:08 PM
From reading some of your posts, it seems you and I have very similar situations! ............................ The thing is my doc is always telling me she really doesn't want to give me the diagnosis of lupus b/c its so serious an b/c I alreayd have a major disease, juvenile diabetes. While she is right, 100% its hard to say to myself well I have this this and this but its not this, or this, its this LOL...
Yeah I hear you loud and clear. I went to PCP today and for the first time he looked tired and frustrated with the whole process as if it were happening to him. He told me he has been frustrated that all the appointments he has been setting up for me with specialist are sooo far apart. He too said he did not want to give me that label until I met more criteria and that he just wants to treat the symptoms. For the first time in 7 months my PCP actually empathized :o ...It was kinda nice. I got more tests to go now its the sleep study they definitely feel the brain fogs could be sleep apnea so I am ok continuing to be guinea pig until we figure this whole thing out. :D
I'm a completely combustible too and get the husband thing too spanglish queen but you are not insane, who i believe are insane are some well most doctors....sad world where doctors make you feel insane.
you are not, I am thinking of you
02-07-2009, 03:12 AM
It drives me MAD, that criteria list. I mean I know they have to have SOME form of criteria that you have to meet.
but all the rheumatologists I have met are GLUED literally to that list, they refuse to stray away from ANY of it.
It's like they leave no room for individuality. As in you have to have this, this and this, before you can get treated.
Meaning they decide if that fits the one criteria or what not.
I have yet to even get diagnosed with UTCD...and I have a huge long list of symltoms and blood work that SCREAMS auto-immune.
The point is:
We all don't fit in little pretty boxes...
end of story.