View Full Version : Not diagnosed yet

05-09-2006, 03:24 PM
Well, here goes nothing. Hi, my symptoms have been steadily getting worse over about the last 12-16 months to the point that I cannot do my job- I'm a retail manager. Last month I went to a new doctor because my primary physician of many years retired. I'd been putting off going because of the doctor search. Because of my symptoms, she ordered an ANA test. It came back positive with a high titer count of <1:640 and it also showed an homogenous pattern. They repeated the test 3 weeks later to make sure it wasn't a false positive and it came back exactly the same. Today, I saw the rheumatologist that I was referred to and he did not seem too impressed with the test results or my symptoms.
I've been thinking that I could handle all of this on my own, but now, seeing his indifference, I can see a long, long rocky road ahead. I'm scared because, even though I can't do my job, the physicians say that I'm not disabled. He did order some more specific ANAs but he made sure to say that he's confident they are going to come back negative.
I asked what, then, did he make of my debilitating symptoms? He said that most of them could probably be caused by not getting quality sleep. I do have trouble sleeping, but I know it's not causing: muscle "buzzing" is the only way I can describe it. I've seen some people say "tingling" and that's close but it's a more "high frequency" feeling. I hope that makes sense. Here's my other symptoms; extreme fatigue, muscle aching all over, short of breath, muscle weakness, loss of strength, especially upper body and my back, loss of coordination- jerky feeling movements, hand tremors, joint aches, bladder urgency, muscle tics and cramps, etc...

If somebody could just tell me I'm not crazy and that I'm going to find somebody to help me, I think it would help me feel better.

05-09-2006, 10:36 PM
You are not crazy. You will find someone to help you. :)

You are going to have to move on from that rheumatologist. Think of it this way... if you hire a painter to paint your house green and, instead, he paints your neighbor's house pink, you'd fire him and get a new painter. You have to be selective and have the strength to keep going until you find the right doctor for you.

05-10-2006, 06:42 AM

You may have to cruz from dr to dr. Many people have to search to find one that will listen (apparently, bedside manner is not a required class).

I was told I have everything from depression to post pardum (my youngest son is 4 now) to chicken pox to "its all in your head." No, it is in my back, knees, hands, arms, mouth, ears, etc... (He didn't think that was funny, but I did.) Don't let them tell you what you can and can not do. Keep pushing until you find a dr that will listen!

Praying for all here,

05-10-2006, 06:52 AM
I totally agree with the others, FIND ANOTHER DR! Get a copy of your test results from that dr first tho so you don't have to repeat them OR pay for them again.
I was sent to a top rheumy in the field of Lupus in 2004. After driving 2.5 hours TO the appt, in extreme pain, he pushed poked and prodded and said, I don't know what is wrong with you but it's not lupus and walked out. He was VERY rude, arrogant and so very wrong. It took another 1.5 years to get the correct diagnosis which is indeed SLE. It's sad that so many of us are on the rollercoaster to diagnosis and that we have to deal with the bad attitude of the think they no it alls along the way. All told it took me 7 years for a diagnosis. My symptoms started in earnest when I was pg with my son and he turns 8 this monday. :) :)
So be persistent and work on your patience cause you are going to need it, but most of all don't give up. And if you don't like the dr then move on. Nothing says you have to stay with that particular dr, and to me it sounds like you REALLY need to move on. I hate when they use guesswork like that, but really love it when they are proved wrong. I so wish I could get all those from my case together in a room just to say I told you so, so that maybe it would help the next person that has the misfortune to cross their path. We have enough to deal with everyday from this disease, the last thing we need is a dr who is not on our side and doesn't listen.
{{{HUG}}} Good luck and come back often.

05-10-2006, 08:29 AM
I too agree with the others!!! This is your body and your life, and it is more important that you find doctors that you are comfortable with that show concern for you!!! You are paying them...not the other way around, and it is important that you find someone that takes you seriously now so that it doesn't cause more problems in the future!!!

Best wishes to you dear one!!! I will be thinking of you!!!

05-12-2006, 06:15 PM
You sound like me...I was too intimidated to "push the issue" with my doctor because I did not want him to feel like I was some psycho hypochondriac or someone looking for sympathy. Your symptoms speak for themselves. I also have issues with how people I work with will perceive me and my illness. There is so little that the public actually knows about lupus, and it covers such a broad spectrum of symptoms. I don't want to have to explain myself to anyone, but I can't help but wonder if they think I am just lazy or a "whiner." You know when you miss work how people ask-"are you feeling better?" well, so many of those people really don't care, that is just their way of saying-"just what is it that's wrong with you?" Luckily, my HR manager has experience with lupus and is totally on my side, but my immediate supervisors just balnkly stare at me with that 'you don't look sick' glare. It can be intimidating and leaves me with a bad attitude sometimes. I have found that since I have been sick I am much more (genuinly) concerned about the well-being of my co-workers. If the others could just walk a mile in my shoes I am sure they would see things differently too. Hang tough and don't guilt yourself out of finding the answers you need and DESERVE. Good luck to you.

05-13-2006, 07:58 AM
I am so sorry to hear about all the bad experiences folks have with doctors. It's really frustrating not to be taken seriously. I have been very lucky to have a great team - a nurse practitioner as PCP, two neurologists and a rheumatologist!

Elisa, maybe you should see a neuro? That is where I started because I had the tingling and numbness first - in my case it is a neuro. condition called transverse myelitis. I hate to say it, and I'm NOT a medical professional so this is just my own experience, but you might ask them to consider MS. I spent a month being tested for that becuase of the symptoms I had, before they zeroed in on lupus instead.

As many here have said, you don't WANT to get a diagnosis of a terrible disease, but at least knowing allows you to go forward with your life and get the right treatment.

Best of luck to you!