New Rheumatologist

[Nomad]

Many years ago, I use to go to a rheumatologist very regularly. This was mainly due to lupus...which kicked my behind pretty badly in my late twenties all the way into my forties.
Then, things were quieter for a short time and I only saw the rheumie now and then.
Somewhere in my fifties, I had some fatigue, aches and pains and dry mouth and dry eyes and saw the rheumatologist and voila...got the dx of Sjogren's Syndrome.
I saw him infrequently as my symptoms were mild and although he had much interest in lupus...he didn't seem to have much interest in SJS.
Then we moved five years ago and now I'm in a new city. Since my symptoms were mild, I didn't see any rheumatologist.
But, out of no where, my mouth has become mega dry and I don't feel well at all.
So...although it wasn't easy to find one that people like around here, I found the name of a rheumatologist and have an appt. early February.
What do you like in a good rheumatologist?
What might I expect at the first appointment?
Thank you.

[meirish]

Im trying to find a rheumatologist again as I need someone to order my Plaquenil for me. I haven't had it for over a year and I am miserable since off the IVIG.

Where I lived before my neurologist ordered the plaquenil as she treated my myasthenia gravis plus all the other autoimmune ailments I had. She was just awesome and I miss her so much. Hard to find good doctors and at my age I don't have as much energy to chase around the country side to find a new one. Have to get my son to take me some times when they are long distances. Sure has been work all these years and not getting any easier in my old age. lol Take care and good luck. meirish

[Nomad]

Loved the new rheumie. She ordered exxovac (sp?). The other med for dry mouth when folks have difficulties with Pilocarpine.
I found my rheumie on the local next door app. I saw one that several people said was outstanding, then looked her up. Bingo. Intelligent and kind. I'm so grateful.

I'm already feel things getting harder in my mid sixties.

[meirish]

Count yourself lucky, that is for sure. I have had 3 rheumatologists with little luck. The last one at the U of MN told met that I "had too many problems and took too much time". About one week later I was very ill and diagnosed with Mycobacterium kansasii at the U. I tell you that rheumy scrambled big time as I think she was afraid of me seeing a lawyer which I had no intention of doing. But I was glad to see her scramble a bit. I saw infectious disease at the U and was treated for one year with 8 pills of antibiotics a day. Guess the rheumy missed that one!!

After all that I have been through I really wonder about seeing one again and tried last fall--the fourth time. That doc told me I didn't have Sjogrens....short and sweet visit and I was out the door. I was not having bad symptoms then so she assumed I wasn't ill. Apparently she didn't know that our symptoms come and go. There are some days I feel rather sarcastic about some of the stuff I have been through....bet others understand this also.

The best one was a doctor telling me that the test that was elevated and important with Myasthenia gravis, was elevated because of my prematurely grey hair. My new immunologist couldn't believe that doctor put that info in the doctors notes.

So, very lucky that you found a new rheumy and good luck to you. meirish

[Nomad]

Holy cow, Merish. That's awful. The GP I just left, wouldn't recommend one because she said she didn't like any of the local rheumies.

I found a new GP and the rheumie on the neighborhood APP. Both good. Spoke via private messages and got first hand info.

I've been reflecting on three upsetting things of late.

1. My father went to GI doc with bad stomach pain. Told he had GERD. Went back again and given
different GERD med. Began losing weight. Went back again to gi doc . Tests performed. He had stomach cancer. Died four months later.

2. Mom complained of bad cough and fatigue. A year before due to some minor procedure had a chest X-ray. A doctor spotted a tiny spot on her lung. Contacted her gp. Sadly, he (GP) ignored the note. Didn't even concern him about her cough a year later. She had stage 4 lung cancer. She was 49. Died three months after dx.

3. My cousin was having super bad fatigue. Minor headaches. GP ignored.  Then delusions came. Husband rushed her to ER when the delusions came. She was diagnosed there with depression and given Prozac. Husband was extremely upset as his wife was not showing signs of any depression. She really had a cancerous brain tumor. Miraculously, she lived six more years with tx.

Are doctors AFRAID of
1. Taking tests
2. The more serious diagnoses
And do they think most, if not all, their patients are exaggerating or lying?


Although it's been many years...the Month of March still is a trigger fir me as that's when my mom died. I had just given birth to my first child when she was diagnosed.

Been on my mind.

I guess we have to chose our doctors carefully and seek a second opinion if we feel it's warranted.

[meirish]

Nomad, Your family had some really bad luck with doctors that is for sure. One thing I have known over the years is that as patients we have to be proactive and keep track of things that other doctors do and say. And I will add that more recently I have discovered that we also need to make sure to ask if our drs get the info from another doctor we have seen. It seems like sometimes these letters or memos to our primary from another specialist will be sent to the wrong department, the wrong clinic, etc. and sometimes are found in the specialists notes or his nurses notes and haven't been sent.

It makes me so frustrated and exhausted having to keep up with all that goes on when we are chronically ill. I would like to always blame someone, but I know that in reality, it is the sign of the times. We have so many patients now....note mostly old people like me..... and the government regulations make it so hard for the doctors and other medical professionals to get all the right paper work done and sent to the right place.

The big wheels think that having Artificial intelligence up and running is going to solve all our problems.
Just wait...there will probably be some things that are improved but bet there will be a ton of new problems that come up and we will still be treading water in the medical field. There is too much information and too much technical stuff going on for the world to be able to manage. My opinion. Pardon me for sounding off again. Have a great day. meirish

[Nomad]

This is so timely.

Four months ago I had some imaging.

Had an appt with the doctor. His staff noticed the results were not in. They contacted the hospital who sent the results that day...of my appt....four months later.

I have a swollen lymph node and need follow up.

I got caught up with something else and forgot to inquire about that imaging test four months ago.

I rarely make such a mistake.

One would think medical folks would rarely do so. But, maybe not.

More imaging next week. Four month delay as my doc never got the results. My appt triggered an inquiry.

[meirish]

As a medical person myself (retired that is) I will say that medical people try not to make mistakes. LIke all professions there are some employees that are not as proficient in their job as others.

Then there is the fact, as talked about before, that there are so many patients and, I swear, the testing done these days is endless. Doctors do blood work and scans like crazy because they don't take the time or often don't have the time to do meticulous head to toe exams on patients. Also, the medical profession has become so dependent on cat scans. Cat scans do not find everything....they do miss things that often patient complaints will make known verbally. Just an old ladies opinion. I wish I had kept track of all the cat scans I have had in the last 40 years.

I doubt we will find an answer to all these issues in our lifetime....sort of depressing thought isn't it. TAke care. meirish

[meirish]

nomad, I just had an appointment with my optometrist who is my daughter in law. Yearly checks as I am back on plaquenil. Anyway, she had gotten a letter from my new rheumatologist and the info in letter said that I had lupus and blood work showed a high sed rate.

Doctors have been checking me for lupus for years but never had any positive blood work to prove this diagnosis. Also, I have a letter from him recently with the results of my blood work and the sed rate is normal. This is my 4th rheumy over the years and I am beginning to think that I need to find another one. This doctor never addressed my autoimmune issues on my second visit (in June) and spent my 7 minute appointment talking about my osteoporosis and need for IV therapy.

I am buffaloed about this doc and wonder what the 3rd appointment with him will entail. Getting really sick of trying to find new doctors to replace my old ones because of my move. This new rheumy is very high strung and nervous....probably over worked, I get that. But still......Yikes. Take care. meirish

[twiggy]

Checking in to see how things are going for you both with the Rheumies.

Nomad, my heart breaks to hear about your family members. Your mom was still so young (hugs). It is frustrating to know just how fragile our bodies can be, and it is especially bothersome when we know a situation should have received better attention. I honestly think many doctors today have become overwhelmed. (If I remember right, physicians have the highest suicide rate of any professional). I was only a hospital corpsman in the Navy for a few years while in the military and I got the "burn out" just from that, so I can only imagine what it's like for doctors. I would guess that meirish could relate as well. It makes me wonder how we let it get to this point where there is so much demand and pressure on so many doctors, because it clearly has been taking its toll. Is it because of shortages in the medical profession? I'm not sure what to think. It does sound like you have a good connection with your current rheumie though, I hope that still continues.

meirish, I feel your pain. My gosh, it can be a challenge to find a doctor that we can feel confident about and develop a good connection with. In the past I've been told things like "you're a woman, you should expect to suffer." I also had appointments with 'specialists' who would not know about the condition I was seeing them for, so I would sit there while they said, "well let's look here on the internet, it says to..."    Also, a past Endocrinologist I saw said that she wouldn't order a DEXA scan or ever see me again because I did not want to get the 6 month injection for osteoporosis. I explained how due to my history of serious side effects I tend to hold off on some treatments, but apparently she didn't see this as acceptable. I hope your luck gets better.

For the past few years now I have been getting seen at the VA and I am fortunate enough to have some good doctors. They actually make eye contact and listen to me (the first thing I always look for). I seem to have plenty of options with specialists, so if one doesn't quite work out then I have others to turn to. I was a wuss about going out much during the pandemic, so my appointments have been by phone (after 3 years of avoiding covid I ended up getting sick anyways, pffft). I stopped driving years ago when I started having blackouts without warning from the IBS flares so I have to ask my son for rides, but his car broke down (we are currently about to get another one). I really do need to get back to being seen, as I'm long due for many tests.

[meirish]

twiggy, You are so right about the burn out in doctors and, really, in all people doing "hands on" medical care. So much to do and so little time. In this day and age when we know so much more about the body and we can find more diagnoses than we ever imagined, it is really hard to find everything we need to treat the symptoms. Also, people are living longer and needing more care. Never ending issues that seem to just keep rolling like a bale of hay and getting bigger and bigger.

I was glad to hear you say that about refusing the IV meds for osteoporosis. This new rheumy really got upset about me voicing that I was not very interested in the every 6 month IV med. I would bet when I go back for next appointment that will be what he will rant on the most.

My hubby and I had a primary care doctor that went through a long dissertation about IV meds for osteo and he gave the stats on amount of falls per year and percentage of fractures in these falls. It was not as many as one would think. By the time he got done with his little speech my husband had decided to just forget about getting this IV. I just hate adding any more medications as I have Stage 3b kidney disease plus AVMs in my colon so I probably will diet sooner than later and more likely from these issues than from autoimmune disease. I almost feel like asking rheumy if he gets paid for every patient he puts on one of these medications.

Thank you for your posts and for taking part in these discussions we have had on "rheumatologist" and all the other tangents we get sidetracked with.. Can get interesting! Take care. meirish

[twiggy]

It sounds like you're dealing with some pretty crummy medical conditions there meirish. Sometimes I am just at a loss for words when I see what people here are going through. It can be so sad to see, but it is also why I appreciate places like this forum. It lets us know that we don't have to be alone on this difficult journey. It feels like we are all on the same path, but just in different modes of travel. You might be on a bike, a trike, a homemade soapbox with the wheels falling off, or maybe in a little red wagon that someone else is pulling... but people are here to give each other the occasional wave and share ideas on repairs when someone hits a pothole. Sometimes we may just need to pull over to take a rest, and have some alone time. I can appreciate that there is an understanding here for that as well. Thanks for the warm welcome.

[meirish]

twiggy, you are so right about people having to just pull over and spend some time alone. I have always told new Sjogies(when I think of it) that it takes so much perseverance to keep up the process of finding new doctors and taking care of our chronic health issues with autoimmune diseases. I know that I will seem to go full steam ahead and frequently come to the point where I don't want to see another doctor, make notes to keep up with the symptoms or talk about health issues to anyone. Sometimes days, weeks or months off are needed to regain ones energy and ability to cope with all that comes our way.

So glad to see you mention this plus loved your interpretation of the way we all travel this road. Thank you so much for your insight. meirish