Rhuemy's

[pearsjon]

do they seem to help. i just had 1st appt. 2 days ago. seems to want to try to find some more answers for me. just curious if seeing one has helped anyone else. and the treament if i may be so bold to ask. thanks

[deucykub]

I see one for Fibromyalgia, and he certainly helps with that! Were you referred to a Rheumatologist by someone?

I don't know that Rheum. would be able to help with Dysautonomia; however, a lot of symptoms of Dys. overlap with Rheum. illnesses like Fibromyalgia (even though it's debatable whether this disease ended up in the right specialty), Lupus, or other autoimmune diseases. (EDIT: My guess is your doctor is exercising caution by ensuring that a Rheum. illness is not causing some or all of your symptoms.) Typically a Rheum. will do bloodwork to look for certain antibodies that are present with certain diseases (like anti-nuclear-antibodies/ANA in Lupus). Even then, it is not a clear cut diagnosis - Rheum. use a lot of personal judgment and physical signs to help determine a diagnosis. For example, there is no "test" per se for Fibromyalgia; diagnosis is based on symptoms and the doctor pressing certain parts of the body to see if there is a painful response. Another example is I had a significantly positive ANA, but I don't seem to have any autoimmune diseases.

Treatment really varies depending on the diagnosis. I take Cymbalta and Flexeril daily and Darvocet as needed for Fibromyalgia. My aunt (by marriage) has Lupus and takes another cocktail entirely for her illness.

Rheum. seem to be the doctors who take on the cases that don't seem to fit into any other specialty. They got stuck with Fibromyalgia back in the early nineties, even though, now, it seems to be more of a neurological illness. One of my doctors said he just doesn't understand the "Voo Doo" that they do, but he said it with respect and admiration!

I'm sure the above is waaay oversimplified, but that's my meager understanding of the specialty.

[Mrs. Burschman]

I saw an episode of "Mystery Diagnosis" where a woman went without a diagnosis for something like 10 years. She finally went to a rheumatologist who figured out she had pernicious anemia -- a severe type of B12 deficiency.

My opinion is, who cares WHAT specialty a doctor is if he/she is willing to listen and help figure out what's wrong and what to do about it! My most helpful doctor is a psychiatrist!

Amy

[pat57]

I have a Rheumatologist , I test positive for RA, they say I don't have it ,but that I do have an unknown auto immune disorder.

no treatment, no dx, and no symptoms! The thing is I did have RA symptons while I was doing the treatment for something else. RA is rough! However I failed to see the Rheumatologist while I was having symptoms because the other treatment was so physically draining. The Hepatitis treatment is known to kick up auto immune issues sometimes. It was a risk I took.

Anyway - got not answers there.

[Guest tearose]

I saw one in the past but did not have any elevation in ANA so they did not need to see me again...that was several years ago.

With my recent Raynaud's diagnosis and Prinzmetal's angina...now my PCP wants me to go to a "Rhumy" to see if anything has changed.

I am just recovering from a bladder infection and vasospasms so I need time before seeing any new doctors!

I expect any Rheumotological tests would not reveal any unusual rheumotological issues. I think even the white red and blue fingers and vasospasms will be chalked up to POTS and ans dysfunction. Raynaud's can be maintained by a regular PCP.

Anyway, if I go anytime soon, I will share.

tearose

[pearsjon]

that's the thing. she ruled out fibromyalgia in 1st visit. good thing. now i am doing a 24hr urine thing,and had to give special

u/a yesterday. did fasting bloodwork(not glucose) yesterday. checking cortisol level. anyone know what that's about.

the tech was freakin out on how many test rhuemy was running. she looked at me and said "ph my god what do u have".

of course i didnot want to even go ther about dys. i told tech hopefully nothing. she said she had never seen such an intensive work-up. i was surprised by that.

rhuemy i think believes ther is more going on than just dys. i am hoping she is wrong. dys is bad enough.

oh yeah of course they blew my vein again. that's 5 times in a row for bloodwork. what is up with that? and it's swelling at the location, i have never had that b4 nor have i ever had one so tender. just thought it weird.

thanks for yalls input.

[deucykub]

I wouldn't get too worried about all the blood work. My Rheumy (and a lot of other docs) did the same with me! I started going to the lab so often that the technicians started to recognize me and say "welcome back!" ha, ha.

If I understand correctly, the cortisol level check can diagnose Cushing's disease if the level is high or Addison's disease if the level is low. Addison's disease looks a lot like POTS.

I have one good vein that's a "giver." After that one is used though, the rest cause me problems. When I went for some research in Boston, they had already drawn blood from my good vein. Then, they had to put an IV in the same area but couldn't use the one they had already "stuck." One nurse tried. She called in another nurse who was the best at putting in IVs, and it took her about an hour and a half to finally find something that worked. Not fun. She cracked up when I thanked her for her hard work, saying, "I've never been thanked for trying to put in an IV before!"

I hope your arm feels better soon!

[morgan617]

I went to a rheumy who ran a bunch of blood work. I have an elevated ANA, and some other weird stuff, but he told me, as he was walking out the door, with his back to me, he didn't have time for "people like me" whatever.....

There is only one group in my city and you can't switch doctors ( my son's had a liver transplant and he hasn't seen an actual doctor in almost 2 years, because they refuse to have him covered by another doctor in the same practice, even though his doc can't see him and they are the only group) Unless you are on remicade, they will not see you, Jake had five of his appts cancelled by them in one year. My friend on remicade has never been cancelled...her co pay is 450 dollars every 3 weeks. It speaks volumes to me.

I hope all goes well with you and you get some answers. And I have one and only one vein too. If they blow that one, they don't get any...hope it heals up fast! morgan

[pamyla]

I see my rheum. more often than my pots doctor now. I was referred there with a positive ANA and livedo reticularis, and they did a ton of bloodwork and that's how I figured out I have multiple tick borne illnesses. I am really thankful she took the time to really explore what was going on with me. Hope you get some answers.

[ajw4790]

Used to see one. Wasn't much help. Ended up throwing me out, when I stood up for myself when they wouldn't help me... Now other drs say they think I have RA but am not treated for b/c of everything else and no help before.

[Rachel]

I saw one once due to an elevated ANA, but we weren't able to find much beyond that. I still have joint issues, though, so I'm not sure what is going on. I've never received a diagnosis that explains the joint pain I have. I might try a rheumatologist again in the future if my ANA is still elevated. Perhaps another doctor would have some more ideas for me.

Rachel