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:
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!
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!