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Old 03-14-2009, 11:06 AM   #1
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Question when do you stop looking for answers etc

I have seen so many dr's which I am sure most of you have.

my new family dr wants me to go back to neuro--three years ago he said it could be MS down the road.

I just had to have a colonoscopy which praise God was ok as I will never have another one (see other post)

But when do you stop trying to get relief, seek answers (if this is really fibro or they finely figure out we have something else) and new med's

Not only the money that has been spent and cost of co-pay for dr's had increased and brand name drugs has doubled (and no generic to replace them yet) to where I can't take some of my meds.

I am just tired and now feel every time I go in for something they blame it all on fibro not every thing we get is fibro(or what ever you want to call it.

I had a great internist 3 years ago and he moved away---I sure miss him. have not been happy with any of my dr's since.

How many go to a Rheumatologist ? The best one we had has moved to SC and the one that replaced him I have not heard anything good about, so would have to go to FT Worth or Dallas A Rheumatologist is the only Dr I have not seen

 
Old 03-14-2009, 06:46 PM   #2
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Re: when do you stop looking for answers etc

Hello, applecollector (great name... we love apples! :giggle: ) Yep, I think we’ve all done that exhausting “doctor dance” where you just go from one doc to another trying to find someone – anyone! – in the medical community (a) who believes you, (b) will listen to you, and (c) actually try everything to help you. It gets really expensive and really frustrating quickly – esp. when you have to wait months - months that YOU get to spend in pain and, often, despair - just to see another doc who spends five minutes with you and leaves... without telling you anything, not even what that day’s diagnosis is! It is so maddening!! So I can understand how you feel. I’ve been doing the same thing myself for over four years (we left all my “good” docs behind when we moved.)

May I ask: why does the doc – I assume your GP – want you to go to a neuro? Is he going on blood work results or is he basing this on exam and discussion or is he simply not knowing what’s wrong and is helping the best way he can – by sending you to someone he thinks might help? I ask this because I spent a great deal of money (high deductible and no coverage ‘til it’s been paid, so I GET that stressor… kwim?) going from doc to doc and I wish I’d asked more questions about WHY that particular doc or kind of doc than I did… I wasted a lot of money, time (off work, even), and energy I didn’t have doing this “dance”… over and over again. Now, mind you, it took like… oh, maybe 4 – 6 years for me to get dx’d, so hang in there. Docs are much more aware of fms now than way back then! So maybe a neuro is the best option for you… but if I were you, I’d just want to know WHY a neuro… kwim?

BTW, did you discuss the expense issue with your GP (or whichever doc prescribes your meds)? If not, then please do. Maybe he can find something generic that will be less expensive (not that I advocate generics, but sometimes something is better than nothing). Some docs will – if they have them and if they know you’re strapped – be willing to give you a month’s worth of samples for expensive meds (or an equivalent), if you really need them. Don’t just stop taking your meds without asking your doc, dear. It builds trust from them to you to know what’s going on and that’s important if you want to stay with this doc – not to mention that it’s better for you if you can find a way to keep taking meds you need. I had to stop taking a med (for pain relief) that my doc had given me because I don’t feel like I can afford $250 for one med right now. Kwim? I looked into some of those subsidized drug programs that some of the drug companies have, but it didn't apply to me. So if you haven't already, do a search for them online and check it out... maybe that could be a help for you too.

Now, your original question:
Quote:
when do you stop I am just tired and now feel every time I go in for something they blame it all on fibro not every thing we get is fibro(or what ever you want to call it.
AMEN!! It is NOT always fibro, but NEVER stop looking for what you need… in my humble opinion. Yes, it’s very tiring and expensive - which means it might take you longer than you'd like. And if you feel your doc isn’t taking you and your symptoms seriously, change docs if you can. But YOU are your best and only TRUE advocate. If you don’t find what’s wrong, you’ll stay ill… and why live that way if you have a choice. I wish I’d made more forceful choices and had known this many years ago (the voice of experience… hah! ). As some could tell you, I LOATHE having to do the “doctor dance”… but I don’t want to keep living with medical issues that affect my quality of life unless I absolutely have no choice. There are days I cry, days I can’t get out of bed, feel despair, dread yet another doc visit… but it gets better. Hang in there, sweetheart!

Quote:
How many go to a Rheumatologist ? The best one we had has moved to SC and the one that replaced him I have not heard anything good about, so would have to go to FT Worth or Dallas A Rheumatologist is the only Dr I have not seen
On this one, I have to say: yes, I’ve been to rheumies, with varying results. There isn’t one I feel is worth anything close to me now and I haven’t bothered tracking one down in the nearest large town where there might be a "good" one (about an hour drive away). For what it's worth, I'd say go to one if you feel there’s a need – like having multiple autoimmune diseases, for example, or if you trust your regular doc and he wants to send you to one or if you have any doubts that what you have is fibro or you just aren't sure of your GP or... you get the gist! But, again, I’d ask the doc the "WHY am I going" question… and “because I don’t know how to help you” or “I think you need more help than I can give” is an okay answer from a doc to me… hopefully it means they’re more interested in helping me than their own ego. I'd also ask myself the "WHY..." question... just to be sure I'm giving myself the best care I can. I sure hope that makes sense! Brain fog is setting in on me...

Anyway, I hope this tirade helps! Good luck and feel better soon!
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Old 03-14-2009, 11:52 PM   #3
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Re: when do you stop looking for answers etc

The going to euro is follow up on MS he said 3 years ago that it could be MS down the road. My last LP did show some abnormalities

guess I will make an appt with dr next week and see what the next step is

 
Old 03-15-2009, 12:17 AM   #4
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Re: when do you stop looking for answers etc

Sounds like the best step, my friend. Please keep me posted. I'll be worryin' over you 'til then! Many {hugs} for you, sweetie. Hang in there. If you can, try to do a little research on Fibro and on MS so you can be prepared to talk to your doc when you see him, and can let him know what you think the next step should be. You know your body better than anyone, after all. Sweet dreams now... I'm off to bed.
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Old 03-15-2009, 06:25 AM   #5
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Re: when do you stop looking for answers etc

Thanks,

I think next step is another LP---I had full MRI last year I think

my first LP was in 03 second in 06 second one was abnormal, but as bad as my spine hurts right now and as bad of pain as I had with colon test not sure I am ready for that

One day at a time

 
Old 03-15-2009, 10:32 PM   #6
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Re: when do you stop looking for answers etc

Quote:
Originally Posted by applecollector View Post
Thanks,

I think next step is another LP---I had full MRI last year I think
I hate to be so ignorant, but what's an "LP"? I'm assuming it's a test of your lower spine?? Or is it a blood test looking for Lupus?? And I am STILL outraged at the treatment you received during that colonoscopy!! Oh, it just makes me want to... to... I don't know, but it would be something violent, or... I'd take my violent streak and turn it into an act of pure cleaning! (I get rid of a lot of anger issues this way! LOL) Seriously, I just don't think they did what they should have for you... the procedure could (and should, I think) have simply been halted and another attempt made later with anesthesia. I'm so sorry you had to deal with that! But now you know, if it EVER becomes necessary to repeat a colonoscopy, tell them you will not do it without full anesthesia. It's your body, after all.

Again, though, I'll tell you - NEVER give up on getting the help and support you need to get your answers. I'm in my own struggle to get my answers, so I can empathize a little. A toast for us: here's hoping we both get the answers we so badly need. :clink: Now go drink some chamomile tea, and rest a little bit.

Please, Please let me know what happens with you, 'kay? Bye for now. Ooops, gotta go now - brain fog is really setting in... Have a good day, sweetie!
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Old 03-16-2009, 09:17 AM   #7
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Re: when do you stop looking for answers etc

Kay, an LP and lumbar Puncher or spinal tap they are no fun either

Thanks for your caring

 
Old 03-16-2009, 01:51 PM   #8
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Re: when do you stop looking for answers etc

Never give up! It might take you awhile to find the right doc. Keep going.

Here's a fibro specialist in Ft. Worth:

Michael O Seibel DO
Fort Worth, TX 76107

Blessings,
Kirstee

 
Old 03-16-2009, 01:56 PM   #9
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Re: when do you stop looking for answers etc

thanks kristee
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