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Old 04-01-2009, 03:44 PM   #1
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Help need doctor advice.

I was referred to a rheumatologist by a hematologist because I tested positive for Lupus. The rhumie said no I think it is fibro. I am on the verge of losing my jobs because when the pain hits I literally cannot get out of bed sometimes. The rhumie said live with it, it's your life now! I'm sorry but I have to have a job! The pain management doc won't take me because the rhumie won't refer me. The GP that I use when I am desperate never ever follows through with anything so getting her referral is hopeless. What the heck do I have to do to see a PM doc. I am so miserable. I want my life and body back!
Sophie 56

 
Old 04-01-2009, 06:19 PM   #2
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Re: Help need doctor advice.

Well according to my daughter, if u call the Doctors office relentlessly they will get sick of it and get it taken care of, if you would like to try that. I feel really bad for you but perhaps you should let the Doctors receptionist know how critical this is for you and your job, that you must keep right now. They must realize how bad the economy is and if you lose your job, its going to be terrible to try and find another one. If you still get no where within a day, i would either show up at the office or i would leave a message for the Doctor to call you immediately and that its very urgent ! If they ask if you are in pain, say yes and if they say then go to the hospital, then ask them why ? So they can tell me to go see my Doctor. Time to put the pressure on someone, if its lupus or fibro, its very urgent that you receive the proper care now so you can function at a decent level and do what you must. I wish you the best of luck with this one and im sorry they are putting you through this, its not fair what some of us must endure at times. I'm sending my friend to sit with you for this one. I will be thinking of you and hoping for the best

 
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Old 04-01-2009, 07:18 PM   #3
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Re: Help need doctor advice.

My rheumatologist was similarly useless. The only doctors who've actually treated my FM have been physiatrists, the others just ran tests and said, hmm. My physiatrist's injections, my massage therapist, and my personal trainer between them keep me functional.

However, if you have bloodwork showing autoimmune disease, you should be getting treated for that. Did the rheumy say why he thinks it is "only" fibro?

 
Old 04-01-2009, 09:52 PM   #4
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Re: Help need doctor advice.

The first ana was 1280 the next the rhumie just said it was negative and would NOT tell me the numbers. I have lots of other blood issues low white and red blood count, anemic, low potassium, low sodium, low chloride and who knows what else. I don't know anything about fibro or lupus or bloodwork but no one is really doing much of anything about it but it is scary to me. Some days I am ok and some the pain is absolutely unbearable. I'm scared and need a doctor that will explain it in elementary terms. Sorry to be so clueless I am just trying to makes some sense of all of this.
Thanks to all. Any more info please let me know.

 
Old 04-01-2009, 10:11 PM   #5
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Re: Help need doctor advice.

Hi Sophie I am sorry for all the trouble you are having. It can be very confusing and mind boggling. I would try another rheumy, you should always be allowed to have the lab results It is your body! If he won't work with you to help you get better what good is he? I found that for me I relate better with women doctors not to be sexist , but they seem to listen more. Getting through the offices to get questions answered seems to be a bit of a problem lately with my rheumy as well . This fm is bad enough for us to be able to remember to call someone once before we fog up It really stinks Maybe call the arthritis foundation for recommendations to rheumys in your area
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Old 04-02-2009, 07:09 AM   #6
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Re: Help need doctor advice.

Good Morning Sophie, ana usually help to determine what autoimmune diseases a person could have. Don't let that upset you so much until you find out, the fact that it was up then down could be a good sign and perhaps not much more that Rheumatoid Arthritis in a flare. I know thats not good either and it can be very painful but in my own case i take bioflex (takes 3-4 months to work) and what a difference. Try to get into your Doctor asap and have her explain it to you. Get a Doctors note for work until you get straightened out so your not in trouble. See if you can vitamin up for your blood, it will still take awhile to kick in but well worth a try. You should still be able to get something for pain while taking the vitamins or getting it from the foods you eat. Once again ask the Doctor what is safe. I do realise that your scared, lord knows the Doctors have scared the life out of me more than once ! I also realise that when your in pain, the frustration can be overwhelming and you probably feel like crying all the time. Thats not good either, you need help right now. Before you go to the G.P. make sure they have the results faxed over, so she can talk with you about the results, let her know you would like a second opinion if your not satisfied.Tell her you need something for either the pain or inflamation or both, so you can go to work. Its discusting and shameful that you are being treated like this and left hanging with no real answers. Let the G.P. know that you are feeling frustrated by this experience. I'm sorry for you and i hope you get relief soon. Let us know cause we care

 
Old 04-02-2009, 12:05 PM   #7
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Re: Help need doctor advice.

I go to a psyiatrist. See if you can get a referral to one. They take a whole body approach, meds, supplements, PT, diet and so on. It has made a huge difference in my life!

 
Old 04-02-2009, 03:33 PM   #8
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Re: Help need doctor advice.

Thanks all. I realize the right doctor makes all the difference but darn...they are sometimes hard to come by. Keep me in your thoughts as I will all of you.
Sophie56

 
Old 04-03-2009, 11:16 AM   #9
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Re: Help need doctor advice.

I have lupus and fibro, 1st...get another rheumi. Fibro is a diagnosis of exclusion and one negative ANA test after a positive test does not rule Lupus or an autoimmune problem out. My ANA went up and down for years. I would get another rheumi and get one NOW. They are all different. You need one that will listen to you and work with you and give you the test results. I had a really bad experience with a neurologist and I changed. If you had been seeing him for a while that would be a little different because you would have to start over, but it sounds like you never got off the ground with this guy. We pay the doctors and we hire them to take care of our medical needs. If they are unable or unwilling to do that, there are plenty of doctors out there that will.

Last edited by ErinS64; 04-03-2009 at 11:17 AM.

 
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