Recently diagnosed. Looking for a specialist. Does anybody know of a doctor who specializes in fibro in Toronto to Ottawa or norther NY state?

Cutiegirl

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Sep 18, 2022
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Recently diagnosed. Looking for a specialist. Does anybody know of a doctor who specializes in fibro in Toronto to Ottawa or norther NY state?
 

cookiebaker

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Jul 26, 2022
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506
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
as great as it is to have a list like that, please make sure you research the names listed..
in my case, there are 10-12 names listed, but only one that is still in my area. all the others have moved on/left the area. kind of disheartening, to be honest.
 

JayCS

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DX FIBRO
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02/2020
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in my case, there are 10-12 names listed, but only one that is still in my area. all the others have moved on/left the area.
Ah, OK, good to know. Altho not relevant to me I did searched for 5-6 names once and I was pretty surprised at the amount of high quality of the docs recommended, all with websites and with the same address. I wonder what the list was compiled from. Pretty sure it's not being updated(?). Same goes for the support group lists.
 

cookiebaker

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506
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Pretty sure it's not being updated(?)
I am also pretty sure it is not being updated.
I even sent an email to the owners of the forum and told them my findings back when i first joined here, and the list has not changed at all.
 

cookiebaker

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DX FIBRO
Diagnosis
07/2022
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Like with the support groups I think that'd be our job to contribute, there's enough else to do.
I tried to contribute by telling them that there is only one of the docs listed that is still in my area (and which one it is).. but nothing has been done about it. 🥺
I can't make actual changes to that list.. add or subtract.. that has to be done by the owners of the website. all we "users" can do is let them know of any problems with or potential additions to a list.
I dont even think moderators of the forums can make any changes to that area.
 

JayCS

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DX FIBRO
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I tried to contribute by telling them that there is only one of the docs listed that is still in my area (and which one it is).. but nothing has been done about it. 🥺
I can't make actual changes to that list.. add or subtract.. that has to be done by the owners of the website. all we "users" can do is let them know of any problems with or potential additions to a list.
I dont even think moderators of the forums can make any changes to that area.
Yeah, I know, that's what I meant. It's volunteer-driven and despite some revenue from ads (and donations) are, but someone has to have the time to not only keep the platform running smoothly 365/24/7 for free, without any organisation behind it, but also to invest in the background info, which I think is quite respectable as it is.

I did once make suggestions for me contributing additional resources like a glossary and the reply I got seemed as they'd even have opened a new software module for that - I just didn't follow it up, cos I don't get as much feedback on my lists of things (symptoms, causes etc.) for it to seem worthwhile. I can't imagine someone ▶️ "adding a fibromyalgia doctor" (the whole form) and that not being actually added.

Did you ever get an answer, by the way?

A workaround might be that if we find some information about docs no longer practicing to put it on a forum thread instead. Could you imagine doing that?
 
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cookiebaker

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Joined
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Messages
506
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Did you ever get an answer, by the way?
never did, no.. not even an auto reply. 🥺

oh well...

I look at it this way - while having the list is great, so often they get posted and then forgotten about and never updated.
I would rather there was no list at all than to have a list that is no good or so far out of date that it is nearly useless - as in my case, 1 name out of 10 is still valid... and it took me a fair bit of time to figure that out for myself.

If there is going to be a list, then there should be someone specifically tasked with at least trying to keep it up to date - even if it is only on a part time basis.. something like "this list gets updated X times a year" kind of thing, and a specific email address to send info to for adding or removing names.
 
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JayCS

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would rather there was no list at all than to have a list that is no good or so far out of date that it is nearly useless
Really? Honestly - I'd be so very glad about the one 1 doc I found on it!
And I must say my own testing results were much more positive...
 

cookiebaker

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Reason
DX FIBRO
Diagnosis
07/2022
Country
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State
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yeah.. really.. get ones hopes up only to have them dashed. (fwiw - the clinic the one remaining doc is at has patient reviews of docs on their website and his are not the greatest over the last couple of years - probably in the "gonna retire soon" mindset)

I am happy that you have had better luck, but for me, every site i look at for fibro help - docs, support groups, etc - there is either nothing at all for my area (or even within 100 miles of me) or what is listed is no longer around (out of date)

so please forgive me if I have a hard time getting excited about one doctor that will probably be retiring soon (yeah, he is that old)
 

JayCS

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DX FIBRO
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I am happy that you have had better luck
hard time getting excited about one doctor
Hehe, well... have you had a look at Germany? Seemingly one doc for the whole country and when you click on it: 0.... That'd've made you happy :-D. But for others the lists did seem more helpful so far.

For my fibro I'm not interested in docs anyway, but for my MCAS I've now decided to simply look up alternative health practitioner reviews in my town, and have come up with one that may be worth trying.... let's see...
 

cookiebaker

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Joined
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Messages
506
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
have you had a look at Germany?
lol, no, i have not.. and i do know that things could be a whole lot worse than they are.
sorry to be so contrary, just having an "off day" i guess.. *as in should have left the computer off, lol*
 

Cutiegirl

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Sep 18, 2022
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Hi everyone, I've looked at the list for Kingston, Ontario. I know one doctor who a colleague has, but she has hardly met him. It is usually residents who see her. The others are rheumatologists so there might be some experience but their websites really don't go into much detail. So I am now searching for doctors in Toronto, Ottawa and NY state. I've only found one specialist in NYC who specializes in fibromyalgia. I don't know if it is worth the cost. I am looking for a doctor who is willing to do all the testing vs. my GP who only did one blood test and an x-ray to rule out arthritis. and than gave me this diagnosis.
 
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