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are there ANY good rheumatologists?
18 Replies
dannape - May 12

You guys, i am seriously distressed at the moment..my primary care dr finally believes i have fibro, so she is referring me to (who she says is the best) rheumatologist in our area, they supposedly faxed all my info 2 wks ago and they are supposed to be contacting me, and nothing...i have even called them, spoke to the receptionist, just wanting to know if they received my information, cause i'm sure they're busy, and i wasn't sure what the turnaround time was, and they never called me back either. i looked online and found 5 drs in my area, and read all their reviews from patients, and they were 99% terrible, what is going on? I'm convinced our healthcare has gone down the toilet..i don't know what to do? Did you guys find it difficult to find a rheumo dr who took you seriously, and how many did you go through before you found one.

By the way i'm in columbus ohio, so if anyone is from this area, and has a good dr, i would LOVE to know their name.

Thanks for listening, i'm just frustrated to find someone who actually cares, and will take the time to see me, and help me.

 

Fantod - May 12

Go to the National Fibromyalgia Association website. There is a directory of fibro-friendly healthcare providers available for just about every state. I was lucky, the person I was referred to actually knew something about Fibromyalgia and took the time to listen to me. A lot of people have seen or put up with terrible doctors. There are still plenty of physicians out there including rheumotologists who think Fibromyalga does not exist. It is recognised by the Centers for Disease Control and the National Arthtis Foundation. Take a look at the website I recommended and see if that helps. Good luck and take care.

 

dannape - May 21

Well, after a month, of no replies, no phone calls, even the rheumatologist office never returned my calls, i called the primary dr back and told her i was not happy, so they said they would see what they could do, lasta night i get a letter, they made the appt for me, the earliest they can see me is aug 30th...3 1/2 months from now,,are you kidding me??? Is this normal??? iw anna look for another dr...

 

Fantod - May 21

dannape - I guess it all depends where you live. Rheumotologists are spread pretty thin in Canada and I imagine some parts of the US as well. Or, this doctor is really good at rheumotology.

Do they have a cancellation list? Or, can you call every darn day to see it they have an opening. Unfortunately, with Fibromyalgia (FMS) the chronically ill patient is left to fend for themselves. If you don't do it, no one is going to do it for you...

Try the National Fibromyalgia Association website that I recommended to see if there are any other fibro-friendly doctors in your area. DON'T cancel the August appointment until you determine if you can be seen sooner. If fact, I'd try to see someone else sooner AND keep the August appointment as well to see who I like better. Just take copies of any tests and bloodwork with you to save time and money.

I understand your frustration completely. When I was first diagnosed, I thought I was going to lose my mind before things started to get better. Hang in there - we are all here for you. Take care and enjoy the weekend.

 

solanadelfina - May 22

I'm sorry to hear it's taking so long. The rheumy who diagnosed me was a joke. She kept looking at herself in the mirror, lectured my mom for ten minutes to join her 'arthritis run', then kicked her out and told me never to miss a day at work and go volunteer in another country or I'd never be emotionally mature. (Really.)

My guardian angel doc is an internist with lots of experience dealing with fibro. Even if the rheumy doesn't work out, there are other categories of doctors who can take good care of us. I'd try asking around to see if any general care docs have experience with fibro, too.

 

dannape - May 22

Thanks Fantod, i did review the fms website, and there are 4 different ones around the columbus area, i googled them and there were patient reviews on all of them, and i have to tell you, they were ALL bad, what is it with rheumy's???

And solanadelfina, if my dr even dared talk to me like that, i would knock them out..that story is just unbelievable, i SO would have reported her, and people like her give dr's a bad name. I almost think i'd be better finding a primary care physician who is knowledgable in fibro...

Thanks for all the info and more importantly, the support...:)

 

mimosette - May 23

OK, here is my experience with the rheumy I found on the National Fibro Association site

My PCP called and referred me, they never called me back.I got my husband's friend who is a physician to call them, they never called me back. So I finally called, and they said they "never received any calls". Yeah, sure.

I got an appt for 4 months away. Went April 15th.

The initial paperwork was about 50 pages long. On the front it claimed they were "The only Board Certified Rheumatologists in the Southeast". LIARS! It was also a mess of contradictions, misspellings, and horrid grammatical errors."Please to be filling out all forms in exactly detail in exactly order" (and these aren't English as second language doctors)

Asked me detailed questions about my sexlife, even after I checked "Married, monogamous, heterosexual", they wanted to know details like did I have anal sex.

Said I could (underlined and in caps) NEVER TAKE A PAIN PILL PRESCRIBED BY ANY OTHER DOCTOR FOR ANY REASON OR THEY WOULD TERMINATE ME". What if I broke my leg? What if I had a surgery ? Oh, well, I guess I would be SOL.

Then they did bloodwork, lots of it, for which I was very grateful. Said they would call me. This is May 23, and I have yet to receive a call. I am just PO'd enough that I'm not calling back, I'm waiting to confront them at my next appt. (they also had permission to email me my results, and no email, either)

Dr prescribed me MELOXICAM for pain. WOW !I have really gotten lots of relief from that ! NOT! Alleve works better.

Made me an appt with their physical therapist,which my insurance only covers limited parts of. I went right over , and it would have been $200 a visit, three times a week. UMM, NO.I worked in physical therapy, I already do all of the things they said they would be doing AT HOME except electrical muscle stim.

I had a very very bad pain day 5 days after seeing the rheumy , so as I was crying so badly I couldn't talk, my husband called them. Their answer ? GO TO THE ER!

Now, you tell me, why have a rheumy if, on a really bad day, they are going to tell you to go to the ER, where they don't understand a flip about fibro ?

I cannot wait until my second appt, I am going to let loose with a force of words so furious it will part their hair.

(oh, I do have all the symptoms of"Classic fibro, which is all that came from that fiasco)

 

dannape - May 24

Mimosette,

Thank you for sharing your story, i am absolutely appalled at how they treated you, i totally get the refusal to return a phone call, they refused to call me AND my pcp, that started them off on the wrong foot, as far as i was concerned, i'm still trying to find a pcp who specializes in fibro, i'm sure it will be difficult, but worth it in my opinion. I'm looking for an "arthritis" clinic or something similiar.

Mimosette, i totally hope that you let loose on them, when you go in, i would ask them how they would react if someone mistreated and disrespected them or someone they love like they have done you, remind them that they took an oath, and if they plan to continue treating people like that, they should find another line of work

Please keep us posted,i am dying to hear how your appt turns out, previous experience tells me, it won't affect them in the least. But at least you'll feel better.

 

lucky13 - June 4

Classical rheumatology training includes 4 years of medical school, 1 year of internship in internal medicine, 2 years of internal medicine residency, and 2 years of rheumatology fellowship, I honestly can't imagine there will be many PCPs out there that have the extra knowledge of the 100's of rheumatic diseases including Fibro that a trained specialist would.
I'm not saying it's not possible, I'm just saying it's not going to be easy to find one.
If it were me, I'd do research on all the rheumys in your area, read the paitent reviews and if you find one with good, or better reviews, call your Dr back and they them you want a referrel to that office. Take finding a DR and put it in your own hands, call the offices, ask how long of a wait you would have to get an appoint once they recieve the referrel and if they can call you if they have a cancelation.
It can take a while to get into any DR as a new patient, especailly trying to see a specialist, because they already have a regular paitent base, plus the new paitents who are just like you trying to get in and get a diagnosis.
The office my family Dr sent me to had 6 Drs in it, the Dr I was orignially suppose to see had bad reviews, so I saw another one and had a lot of luck, he was very knowledgable, understanding and informative. He anwsered all my questions and done extensive test to rule anything else out.

And to mimosette, who commented on the perscription Meds clause, that is actually normal due to perscription pill addiction, even my family Dr has that policy, it's to try to prevent the pill addicts from going from Dr to Dr getting thier drugs. It's going to become more widespread with more Drs.
Also as far as over the counter pain, I use Tylenol Arthritis, for me it works better then Alieve or Advil, plus Alieve and Advil also treats inflamation which we don't get wit Fibro.

(sorry for all the spelling errors, I'm at work and can't spell check)

 

lucky13 - June 4

Oh I also forgot to mention that I had to travel to another city to see a rheumatologist ( I had to drive about 75 miles north of where I live), so maybe check your surronding areas to see if there are any better ones, Dayton and Cinnci aren't that far from Columbus, trust me it sucks to have to travel to a DR, but if you can at least find a good Dr for your diagnosises and begining treatment you can always try to find a closer Dr later if traveling becomes to much.
The most important thing is having a good, knowledgable Dr who knows about Fibro and what can help treat it.

 

lucky13 - June 4

I guess we aren't allowed to post links on here so if you will google rheumatology in Columbus OH and rheumatology in Dayton OH you should hess a website come up that says healthgrades, this has reviews of Drs in your area and there are some with good reviews on there.

Good luck, hope this helps.

 

kvc33 - June 5

I saw a rheumy once, he was a total jerk and hadn't even heard of fibromyalgia. That was about 15 years ago. He diagnosed me with arthritis which I do not have. In my opinion no one knows how to "treat" fibromyalgia, the pain killers, antidepressants, and anticonvulsants that are sometimes used just lessen the perception of pain, they don't cure it or fix the problem. Because of that, I don't see a need to see a rheumy, a pcp can prescribe drugs that may help with the pain.

 

julissarodriguez - June 5

Hello.. I live in the Houston/Pasadena TX area. I found a rheumotogist who saw me within one week. So, i dont think that what youre going thru to get an appointment is "normal". If I were you, I would call around and get an appointment with another doctor..

Julissa

 

irishbookfairy - June 9

Sorry to tell you this. I firmly believe with all my heart AND soul that there are absoloutely no good rheumatologists anywhere! I have been to several in Austin and my primary says without doubt that I have RA but until my RA factor test is a 30 not one of the sleaze balls will DX me. Too concerned about playing their litttle games with the insurance people to care about how people suffer. My fibro is excruciating and add RA with no meds and....well put it this way my husband went out and bought me a pretty blue roses decorated cane this evening! I can no longer walk on my left leg! Sorry for you sweetie!!!

 

mimosette - June 9

Well, I went back for my second visit today, and very nicely but very firmly told the Nurse Practitioner how displeased I was.

I got to see a different dr, and he talked to me like I was an intelligent adult, didn't condescend, or act like he was doing me favors, then got the first God Complex woman dr in, and made her sit while he finished my visit. LOLOL!

They both are concerned because ALL pain pills make me very sick, so I am being referred to a pain specialist.Was presribed Celebrex (yeah, right , i have high hopes (not!) for that.

I told them I wasn't shelling out any more money on anti-inflammitories, if they wanted me to try another, give me some samples, so I got a big bag of samples.

When they heard how badly all the minor pain meds(lortab, codiene, Tramadol) affect me,they said they didn't feel comfortable prescribing another , and want the pain doc to evaluate me.

I got a VERY thorough exam , results of my bloodwork (neg for lupus and RA, thyroid working well, D levels good, iron good, etc, ) Inflammation levels are up.

 

dannape - June 10

mimosette,

Thanks for sharing, i was waiting for your reply. i think it's hysterical that they made the female dr sit in...maybe teach her a lesson of how patients "should" be treated...

Well, inflammation (which i think is the sed rate) is increased due to the fibro, right?

I started off a couple years ago with the 50 mg tramadol, then i went to 2 and now that barely takes care of the leg and back aches.

 

Fantod - June 10

There is correlation between Fibromyalgia (FMS) and an elevated SED rate. The latter would be due to an underlying condition like arthitis. FMS does not cause inflammation. Take care.

 

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