Another frustrating appointment

Posted by ske22 @ske22, Mar 16, 2021

I finally was able to get in to see a rheumatologist. She did a course of labs, and today called to go over the results.

She said that one of the labs she used to test for possible autoimmune conditions was showing a little low, and two others were normal. She said since she didn’t really see anything in my labs, there isn’t anything else she can do for me. She said that my body must be taking care of itself if nothing is showing in my labs.

She asked me more questions again about any rashes, which I told her I do get. I had previously told her all about my symptoms in our last appointment, but I don’t think she recorded any of it because she didn’t seem to have any familiarity with them. And even though I’ve mentioned several times that I have kept good records and photographs, she didn’t want to see them either last time or this time.

I also asked her about the possibility of Still’s Disease based on a previous recommendation, but she seemed very dismissive of the idea and just wanted to know where I had heard that suggestion. She asked about any fevers when I mentioned the Still’s Disease, but then moved on.

I told her I understood that nothing was showing in the labs, but that I was having symptoms still and I needed to know what we could do to address that issue, regardless of an official diagnosis or not. The response was “tell me what you are expecting from me and I will see if I can do it for you.” I didn’t even know how to answer that-I’m expecting help?

I finally asked about possibly doing some imaging of the joints I’ve been having chronic pain in, and she at least said sure we can do that. But it seems odd that I am the one to bring that up? She wasn’t even going to schedule any further follow up or anything with me until I asked about the imaging.

Maybe I’m just being sensitive from the constant frustration of not having answers, but I didn’t feel like that appointment went very well. Maybe you guys could give me some other perspective/opinions/suggestions?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@ske22

I really appreciate everyone taking the time to answer! It helps me not get so discouraged. I am looking into getting in with a different rheumatologist with a second opinion, and I also am not too far from the Mayo Clinic, so I’m looking into getting an appointment there as well. I will continue updating!

Jump to this post

@ske22 I’ve been thinking about you and wondered if you’ve been able to get an appointment at a larger medical center. Have things improved for you? Becky

REPLY

Are you at the one in Minnesota or which mayo clinc,

REPLY

@ske22 I’m really hoping we can hear from you. Have you had any luck finding a rheumatologist?

REPLY

Your appointment was a sign pointing to how miserably ineffective the medical profession has become. I hope you don't stop expecting more because more is what doctors used to do but no longer feel the need to do. A common phrase family doctors now use when a question is asked that they can't or won't answer is "That's why we have specialists." Well, you have seen the specialist you thought could help you, but came away upset and disappointed. Join the club. It is hard to keep trying because it is like throwing darts at a board and constantly missing. How are we supposed to proceed when guidance is lacking? My doctor doesn't even touch me. I might as well be on the telephone. I really don't know what to do for myself so I guess can't give you any suggestions except to keep on trying if you can afford to. If not then self care is the only other alternative. I have been doing that for years but it would really be nice to know that there would be a professional to turn to when times get rough.

REPLY
@krisjb1

Your appointment was a sign pointing to how miserably ineffective the medical profession has become. I hope you don't stop expecting more because more is what doctors used to do but no longer feel the need to do. A common phrase family doctors now use when a question is asked that they can't or won't answer is "That's why we have specialists." Well, you have seen the specialist you thought could help you, but came away upset and disappointed. Join the club. It is hard to keep trying because it is like throwing darts at a board and constantly missing. How are we supposed to proceed when guidance is lacking? My doctor doesn't even touch me. I might as well be on the telephone. I really don't know what to do for myself so I guess can't give you any suggestions except to keep on trying if you can afford to. If not then self care is the only other alternative. I have been doing that for years but it would really be nice to know that there would be a professional to turn to when times get rough.

Jump to this post

I am shocked and disgusted with how inadequate and pathetic our medical system is, especially when my primary care doctors over the last two and a half years has referred me to so-called specialist yet I go to these specialists and the majority of them don't even want to lift a finger to figure anything out they want to quickly blame it on anxiety or depression or stress and write you out of prescription to go on some kind of psychotic medicine which is a bunch of bull crap. I have never seen such third world country rated medical specialist as what I'm dealing with right here in the United States. I've absolutely given up. 3 years of being referred over and over and over again to different specialists you have to wait 6 months to see a doctor for a first time patient appointment, then you got to wait another month or two to get an MRI and then have to test doesn't show anything but you're still suffering with debilitating symptoms and it just seems like you get pushed from one doctor to another and the mindset that I am getting from a lot of these doctors over the last three years is that they're trying to pawn you off on another doctor just to get rid of you because they do not want to do diligent research and hard work in getting at the facts of what is exactly causing the symptoms that you're suffering from. They just don't want to put the effort in anymore. They want to get out there prescription pad and write you out of prescription and send you on your way.

I'm through with the medical doctors here in America I'm through with them

REPLY
@krisjb1

Your appointment was a sign pointing to how miserably ineffective the medical profession has become. I hope you don't stop expecting more because more is what doctors used to do but no longer feel the need to do. A common phrase family doctors now use when a question is asked that they can't or won't answer is "That's why we have specialists." Well, you have seen the specialist you thought could help you, but came away upset and disappointed. Join the club. It is hard to keep trying because it is like throwing darts at a board and constantly missing. How are we supposed to proceed when guidance is lacking? My doctor doesn't even touch me. I might as well be on the telephone. I really don't know what to do for myself so I guess can't give you any suggestions except to keep on trying if you can afford to. If not then self care is the only other alternative. I have been doing that for years but it would really be nice to know that there would be a professional to turn to when times get rough.

Jump to this post

Also to follow up on your comment that your doctor does not even touch you and you might as well have the doctor appointment talking to the doctor over the phone, I have encountered the exact same thing. I have had serious debilitating issues that in a sense point to autonomic nervous system breakdown or total malfunction of my autonomic nervous system that affects my heart, my vision, my breathing, my blood pressure, my pulse rate, my bowels etc etc and many of the specialists that I've seen don't even touch me. They've never looked down my throat they've never looked in my ears they've never looked in my eyes they haven't done much of anything.

They do send me off for MRIs or cat scans but a lot of these problems that many people are having that are on the Mayo clinic blog which are very similar to my debilitating symptoms are not showing up on MRIs or blood workup or urine analysis or anything else. Something is going on with our nervous system or with our autonomic nervous system but these doctors just do not really want to deal with it. And they definitely do not want to take the time to even physically put their hands on you and and check you over from head to toe.

REPLY
@joannemm30809

Also to follow up on your comment that your doctor does not even touch you and you might as well have the doctor appointment talking to the doctor over the phone, I have encountered the exact same thing. I have had serious debilitating issues that in a sense point to autonomic nervous system breakdown or total malfunction of my autonomic nervous system that affects my heart, my vision, my breathing, my blood pressure, my pulse rate, my bowels etc etc and many of the specialists that I've seen don't even touch me. They've never looked down my throat they've never looked in my ears they've never looked in my eyes they haven't done much of anything.

They do send me off for MRIs or cat scans but a lot of these problems that many people are having that are on the Mayo clinic blog which are very similar to my debilitating symptoms are not showing up on MRIs or blood workup or urine analysis or anything else. Something is going on with our nervous system or with our autonomic nervous system but these doctors just do not really want to deal with it. And they definitely do not want to take the time to even physically put their hands on you and and check you over from head to toe.

Jump to this post

Facing the facts-they don't know that much and certainly aren't interested enough in your specific problems to find out more. Additionally the medical associations have put a choke hold on them as far as what they can say to you. So even if they want to do more they can't without risking their licensure. That is a bad way to have to continue in a chosen profession for someone who may have begun their medical career as a person wanting to help others -because they can't. Your nervous system issues may be related to electro magnetic pollution. It exists and it is real but the likelihood of it being discovered by your MD is pretty remote.

REPLY
@joannemm30809

I am shocked and disgusted with how inadequate and pathetic our medical system is, especially when my primary care doctors over the last two and a half years has referred me to so-called specialist yet I go to these specialists and the majority of them don't even want to lift a finger to figure anything out they want to quickly blame it on anxiety or depression or stress and write you out of prescription to go on some kind of psychotic medicine which is a bunch of bull crap. I have never seen such third world country rated medical specialist as what I'm dealing with right here in the United States. I've absolutely given up. 3 years of being referred over and over and over again to different specialists you have to wait 6 months to see a doctor for a first time patient appointment, then you got to wait another month or two to get an MRI and then have to test doesn't show anything but you're still suffering with debilitating symptoms and it just seems like you get pushed from one doctor to another and the mindset that I am getting from a lot of these doctors over the last three years is that they're trying to pawn you off on another doctor just to get rid of you because they do not want to do diligent research and hard work in getting at the facts of what is exactly causing the symptoms that you're suffering from. They just don't want to put the effort in anymore. They want to get out there prescription pad and write you out of prescription and send you on your way.

I'm through with the medical doctors here in America I'm through with them

Jump to this post

Yes, they are pawning you off because they haven't a clue about what is wrong with you. I think that when a dr. does that he or she shouldn't be fully paid. But, that is an opinion that is not widely shared. Too bad, because if there was a relationship between the dr. actually serving your needs and payment you may have found out more about your issues by now.

REPLY
@joannemm30809

I am shocked and disgusted with how inadequate and pathetic our medical system is, especially when my primary care doctors over the last two and a half years has referred me to so-called specialist yet I go to these specialists and the majority of them don't even want to lift a finger to figure anything out they want to quickly blame it on anxiety or depression or stress and write you out of prescription to go on some kind of psychotic medicine which is a bunch of bull crap. I have never seen such third world country rated medical specialist as what I'm dealing with right here in the United States. I've absolutely given up. 3 years of being referred over and over and over again to different specialists you have to wait 6 months to see a doctor for a first time patient appointment, then you got to wait another month or two to get an MRI and then have to test doesn't show anything but you're still suffering with debilitating symptoms and it just seems like you get pushed from one doctor to another and the mindset that I am getting from a lot of these doctors over the last three years is that they're trying to pawn you off on another doctor just to get rid of you because they do not want to do diligent research and hard work in getting at the facts of what is exactly causing the symptoms that you're suffering from. They just don't want to put the effort in anymore. They want to get out there prescription pad and write you out of prescription and send you on your way.

I'm through with the medical doctors here in America I'm through with them

Jump to this post

@joannemm30809, @krisjb1 ,
I feel the pain from both of you. Been through the same scenario for the last 5 years and still no clear answers. Self-care is primarily the reason I’m still here! So damn frustrating!,

REPLY
@clutch

@joannemm30809, @krisjb1 ,
I feel the pain from both of you. Been through the same scenario for the last 5 years and still no clear answers. Self-care is primarily the reason I’m still here! So damn frustrating!,

Jump to this post

Keep up the good work. You are probably doing a better job than an MD could do. You care about you and he or she does not. I frequently order my own tests from Life Extension. They have quite a few and their prices are good too. Results are usually very quick. As a bonus, there are people on staff who can help with interpretation. As far as prescriptions-you may be able to find what you need online by searching carefully and being persistent. Same thing with determining the cause of your issues. Just keep trying.

REPLY

I have appointments like this with most doctors; I have one excellent nurse practitioner as my primary doctor (she has been the most supporting primary doc ever and listens, make recommendations and send referrals to follow up with those recommendations) I have a neurologist (unfortunately he is a junior doctor at the VA and doesn’t get his recommendations for test approved and at great lung doctor he is doing his best to improve my lung functions that were and are being damaged my my pain doctors medicines). Thank you for sharing and I hope someday they will teach doctors that we are at there mercy and we are trying to figure out why we hurt or have other medical issues.

REPLY

How does one know if you have a autoimmune Disease? I seem to be chasing pain since my first back injury in 1978, I now have memory, urology, scaring pain from spine nerve surgery, protein in my spinal taps, migraines, and lung issues. How do I get a team of doctors together and figure something out as a team; they each treat there area of expertise, but not my whole body.

REPLY
Please sign in or register to post a reply.
  Request Appointment