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FRAN0426's Photo FRAN0426 Posts: 21,822
10/10/12 5:37 P

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That shows she is willing to make sure you will be able to understand what you need to know , sounds like a good choice, hope all goes well

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KYLIESCHELLE's Photo KYLIESCHELLE SparkPoints: (27,450)
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10/6/12 11:11 P

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That is great news Kristina! Good luck with your appointment. Take care!

Michelle from Florida
Co-Leader, Fibromyalgia and Exercise Team
Co-Leader, People with Health Issues United Team


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KMBJBB's Photo KMBJBB Posts: 1,209
9/19/12 5:18 P

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Doc has agreed that there is only one really good and caring rheumatologist in this area. I have a referral to see her and we had a video chat at my doctor's office this morning so I could discus my concerns. She typed back her responses as I am total deaf. She understands and is willing to make sure I understand everything and will follow up everything with my primary care doctor. They will work in tandem regarding my care and I will have everything in writing. She will put together a notebook that we will keep everything in and I take it home with me and take it back for each visit with both her and my primary care. She has seen my medical records and understands my position. Also states that I definitely have fibro and neuropathy no matter what the neurologist said. I am looking forward to this first visit. I have that in 1 month.

Kristina

"Kindness is a language which the deaf can hear and the blind can read." - Mark Twain


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KYLIESCHELLE's Photo KYLIESCHELLE SparkPoints: (27,450)
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9/19/12 12:52 A

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Can you possibly do some research on your own to find a good rheumatologist? Mine treats my fibro and she is absolutely fabulous. She spends tons of time with me and also sends progress notes to my family doctor. A rheumatologist is really a great specialist for fibro and mine is also board certified in allergy/immunology as well. There are great specialists out there it just takes a little legwork to find them. Are there any fibro support groups in your area? If so you can ask around to see if a rheumatologist gets good patient reviews. The fibromyalgia and chronic pain association used to have a list on their website of fibro support groups and doctors around the country. Maybe you can check there. Best wishes to you as you try to find a great doctor.

Michelle from Florida
Co-Leader, Fibromyalgia and Exercise Team
Co-Leader, People with Health Issues United Team


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KMBJBB's Photo KMBJBB Posts: 1,209
9/18/12 10:45 P

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Thanks. I will ask the doctor tomorrow when I see him. I'm staying up too late and need to get to sleep, but for some reason I can't.

Are there very many ways to deal with this without drugs? Seeing as I have all these allergies to antibiotics, and I'm not sure what all else offhand. I have a listed in my wallet, and all my doctors have it. Hubby even carries my allergy list. I think last we looked there was a total of 164 things on that list.

Kristina

"Kindness is a language which the deaf can hear and the blind can read." - Mark Twain


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KERRY4614's Photo KERRY4614 SparkPoints: (74,101)
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9/18/12 10:35 P

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emoticon Dr. Kerry suggests that you see a pain management specialist. My previous general practitioner sent me to rheumatologist and he took 23 x-rays and the next time he sat and went over the results with me and then stated he knew I was in pain but there was nothing he could do for me and promptly walked out. The pain management doctor listens to me and addresses the pain. emoticon

Edited by: KERRY4614 at: 9/18/2012 (22:37)
My life tomorrow will be the result of my attitudes and the choices I make today.




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KRYSTALLA's Photo KRYSTALLA Posts: 1,441
9/18/12 9:56 P

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Other then medical tests ruling out that you don't have other things that have similar symptoms, a doctor will usually have you go to a rheumatologist to confirm that you do indeed have fibro. Usually if you have been referred from your doctor to a specific one they will work together on your treatment plan. The one I had was very nice and understanding, she worked with my doctor in setting up a plan, after that I ended up never having to contact her as my doctor at the time (he retired) kept up with it. But that was over 20 years ago. If that rheumatologist was still practicing, I would have no problems going to her, but she has had a bad deal with Lupus so doesn't work any longer. Another thing your doctor may recommend is a pain management specialist, I have been told a few times, that I should go to one, but right now have no insurance so can't afford to do so.

Lisa

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KMBJBB's Photo KMBJBB Posts: 1,209
9/18/12 9:32 P

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Okay - I was diagnosed basically by my primary care doctor who went over my list of symptoms, medical records, and such over the past 33 years. He has since referred me to a neurologist regarding my neuropathy and I was told by this neurologist that my previous neurologist in another state was a quack and that I don't really feel what I am feeling and that I am a waste of a doctor's time. Then I got another referral to a different neurologist who confirmed what the neurologist in Missouri found and that yes, I had neuropathy. That neurologist also agreed that I have fibromyalgia and agreed with the carpel tunnel syndrome. Now, my primary care wants me to see a rheumatologist. I have fears about that.

I have heard all kinds of stories regarding rheumatologists over the country and none of them were good reports. Most terrifying were 3 different cases, one in Florida, one in Texas and one in Montana where the friends all have rheumatoid arthritis. the rheumies were trying to get the meds stabilized but not keeping up with blood work and labs and so all 3 of them contracted Hepatitis C and cirrhosis of the liver. I did a check on the rheumy that my doctor referred me to and didn't really see anything that made me feel safe. When I called the office and made some inquiries I was basically told that "the doctor knows his job and it's not up to the patient to check up on his performance". Well that's not right. I refused to go.

I have massive allergies to food, drugs, environment, soaps, cleaners and all kinds of stuff. My doctor has me on a very low dose of one medicine that my only side effects are extreme thirst and drowsiness. It is not really helping the pain levels to subside, but I do get some decent sleep at night since it does put me to sleep. Do I really need to see a Rheumy for my treatment? I have such a fear, that I get into anxiety and panic attacks.

Kristina

"Kindness is a language which the deaf can hear and the blind can read." - Mark Twain


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