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Old 05-29-2007, 06:06 PM   #1
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Rheumy visit

I am finally getting to see the rheumatologist this week after over six months of waiting. What are the most important things I should ask/tell him? I always end up forgetting to say or ask something in these appointments, and when I write stuff down they don't even look at it and I get so flustered I don't even read it and I still forget things! Any helpful suggestions would be super appreciated!

Last edited by desperate1; 05-29-2007 at 06:06 PM.

 
Old 05-30-2007, 06:10 AM   #2
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Re: Rheumy visit

All I can advise is to tell him aboout every little ache and pain and problem. I had no idea so many of my problems, like IBS, were related to my fibro

 
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Old 05-30-2007, 06:27 AM   #3
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Re: Rheumy visit

Thanks for replying! I think I am going to have to write it all down for him.

 
Old 05-30-2007, 05:01 PM   #4
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Re: Rheumy visit

That is what I did. I made 2 lists - one with every symptom I could think of and one with all medicines - prescribed and OTC. Did the list on the computer so could add and delete as needed and keep for future use. That way I had everything handy for the rheumy when I got there.

Good luck.......

 
Old 05-30-2007, 06:01 PM   #5
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Re: Rheumy visit

Thanks! I made a list of symptoms and a separate list of what I've taken/tried for the CFS specialist who didn't even look at it. Hopefully the rheumy will be different! I am desperate to find out what is wrong with me.

 
Old 05-30-2007, 08:59 PM   #6
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Re: Rheumy visit

If a doctor doesn't look at a list of mine, I always write the date of the visit on it and put patient issues for visit and then ask the nurse or front receptionist to put it in the file, with a sort like the doctor forgot to attitude. I've seen them in the file so at least I can say I've tried and hopefully when medical records get sent to specialist they get a copy of it too! I also hope it helps my S.S. case!

 
Old 05-31-2007, 01:06 PM   #7
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Re: Rheumy visit

Well, I saw the rheumatologist today. He was nice and actually did seem to listen to my symptoms. But I'm still lost and confused. He basically said I have CFS and Fibro, but didn't tell me what to do. He gave me a referral to psychophamracology to get a prescription for Adderrall (sp?) or another energizing medication, because I guess in the network he works in only psych can prescribe these things, and a referral to GI about possible IBS. Other than that he said come back in 3 months.
Has anyone used Adderrall (or something similar) for Fibro? I'm so confused. I feel like I've been told I have this lifelong disease but there's no cure. To make matters worse I cried in his office, out of frustration mostly, so I probably looked like an emotional, pathetic fool. I need my life back!! Will Adderrall give it to me, or should I try another doctor? I don't think I have the energy, quite frankly.

 
Old 05-31-2007, 06:50 PM   #8
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Re: Rheumy visit

Sorry that you are having such a difficult time. Your post touched me as I could relate. When I saw my regular doctor last week I ended up crying in his office. I have been to soooooooo many doctors and not able to work in 2 years. SSDisability was on my list to talk with him....when I got to that part of the list I just broke down in tears as it suddenly hit me that I will not likely ever be able to work again and alllllllllllll the money I am spending on alternative care with acupuncture, chiropractor, and acupressure massage.....my insurance pays for NONE of that care. While he was very supportive and compassionate and agreed to help me with the medical support for SSDI.......but, stated he was giving me a referral to a psychiatrist.....that just made things worse for the obvious reasons....and the flood gates opened more. I am sure with the world being as litigious as it is that their insurance medical protocols dictate that when you have a long term chronically ill patient who is crying to document a psychiatric referral. But, that just wasn't what I needed to hear at that particular time. I think I would be abnormal if I didn't start crying when finally after 2 years I have decided to apply for SSDI and realize that my career is over---10 mos before retirement so that means a HUGE reduction in my retirement as I will get an early age penalty applied. Who wouldn't be shattered with that alone?????

It would just be nice if doctors would realize the true impact of this disease/disorder and know that it is okay for us to occassionally cry, and doesn't mean we are in need of a psychiatric referral. If I was crying at half my appts with him then I would understand that....but this has only happened a couple of times in the year that I have been seeing him.

Hang in there .......hope you are better soon.

 
Old 05-31-2007, 08:23 PM   #9
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Re: Rheumy visit

desparate1, I am a little late you have already visited your rhuemy but my best advice is to always get copies of your tests and bloodwork. Ask for them they are yours. I always ask them to please mail a copy of the bloodwork either when I have it drawn at the docs office or when they call with the results. I started this by taking a self addressed stamped envelope, eventually they said we don't need that. It is so important to know what is going on yourself and not take the docs word for it.

I have IBS and see a GI doc for it. Also I have had success in improving my energy by working on getting my thyroid in better shape. Elmhar on this board is the person to ask about thyroid and fms. Good Luck and keep pushing for the best care you can get.

Glojer

 
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