Steve and I drove to Duke University Medical Center last Monday so I could see the Rheumatology Department Chief. It comforted my heart to know that I was seeing the top tier guy at a top tier hospital because my medical history has been a bit complex over the years.
I was seen first by a more junior rheumatologist who amazed me by spending over an hour with me, asking probably fifty questions about my health, lifestyle, history, symptoms, etc. That was all going along swimmingly until he asked a particular question that caused me to burst into tears and then the bursting into tears caused both fellas in the room to immediately leap into action. Steve hurried across the room to put his arm around me and the doctor reached out to pat me worriedly on my knee before applying himself to locating a box of Kleenex.
It really wasn’t even the particular question that brought the sudden tears. It was the fact that my long history of ailments was being trotted out and lined up and discussed and the weight of it all suddenly made me a little sad and a lot overwhelmed.
The doctor was most compassionate and apologized for asking all the questions. I told him I was impressed that he was taking the time to ask them and to carry on.
After he had finished with the question-asking, the Kleenex-finding, and the comfort-dispensing, he went to get Dr. St. Clair, the doctor I had come to see.
Dr. St. Clair had already looked over all of the records that had been forwarded from my Greenville rheumatologist and had reviewed the answers to the questions his colleague had gathered. He asked a few more questions, did a physical exam, and then was quiet for a moment before saying something rather astonishing.
He said, “Mrs. Smith, I am not convinced that you have rheumatoid arthritis.”
Steve said that in almost four decades of knowing me, he thought he had seen my every expression; however, he had never seen anything like the look of incredulity I gave Dr. St. Clair.
Dr. St. Clair went on to say that R.A. is generally seen in many areas of the body beyond the hands and my condition seems confined only to my hands. He also asked if the medicine I had been taking for eight years for RA had made any difference and I said, “Not at all.” He replied, “Well, then there is a good possibility that you’ve been treating the wrong disease.”
I was a bit disheartened by that news because the medicines I’ve been taking have been heavy-duty and have affected my liver, my platelets, my immune system, and who knows what else. And he was telling me those might all have been for nothing?
He said there was a possibility I might instead have psoriatic arthritis but he wouldn’t know for sure until he had done x-rays and put together a few more facts from my records.
My next thought was that if I don’t actually have R.A., how does that affect my recent diagnosis of obliterative bronchiolitis? The pulmonologist was leaning heavily on the fact that I had R.A. because it so often goes hand in hand with OB.
After a few more minutes of conversation, he sent me off for x-rays and said he would be in touch by email in the next few days. Of course, I was very interested to see his response and eager to get a diagnosis settled once and for all so that we could get to the proper treatment and medication.
This picture is post-tears and pre-alarming pronouncement.
Well, yesterday afternoon I got an email from the doctor which said, “I am writing to let you know about the results of your x-rays. In my opinion, the findings are more consistent with osteoarthritis than an inflammatory arthropathy. I felt that the official reading was less informative than I would have liked. Therefore, I am planning to review these x-rays next week with the musculoskeletal radiologist and will let you know if they have any different opinions. If they agree, then I feel the diagnosis of rheumatoid arthritis is on shaky grounds.”
He signed it, “Bill St. Clair,” instead of Dr. William St. Clair. I loved that folksy touch in the midst of all the medical mumbo jumbo.
So the bottom line? My condition has caused the Duke Chief of Rheumatology puzzlement and another specialist is needing to weigh in to find answers.
I’m not sure how I could possibly have been misdiagnosed all these years; I mean that whole concept just boggles my mind. All that medicine, all that money, all those trips, all the unwanted side effects–for nothing?
In the meantime, I have had a worsening of symptoms. Completely out of the blue, my left little finger has become swollen and extremely painful after being perfectly fine for many years; it’s to the point where it is getting more and more difficult to do the things I need to do and love to do. So I am especially eager to hear some sort of final diagnosis and am hoping there will be accompanying (proper) medicines and treatments to help slow this progression down.
A week from Thursday, I am scheduled to see my pulmonologist for a follow up on the OB diagnosis and another round of intensive pulmonary testing which will let us know if there has been a progression of that condition. I will be curious to see her reaction when I tell her I don’t seem to have RA after all and see how (and if) that affects her diagnosis.
We are thinking of moving my pulmonology treatment to Duke as well, or at least get an initial consult with a specialist there to see if they are in agreement with the Greenville pulmonologist. Since I have two conditions that are complicated and since I have a history of stumping doctors throughout the years, it only makes sense to get the best medical insights I can.
So to sum it up, things have been interesting on the medical front recently. After being told for 12 years I had COPD, I’ve now been told I do not have it. (And actually have something worse.)
And after being told for 8 years that I have RA, I’ve now been told I probably don’t have it. And since both my breathing and joints continue to get worse, I am hoping and praying to find definite answers in the next few weeks and months.
On the bright side, I love going to the particular Duke building that my clinic was in. (Sarah had quite a few appointments there in her cancer years.) I always feel like I have been transported to England which is a happy thought in the midst of a stressful time.
Sarah had a little adventure last Friday. She drove 500 miles round trip to Winston Salem, NC to see comedians Rhett and Link. They were on a tour across the country in honor of their first novel, The Lost Causes of Bleak Creek.
She has been following them for about 6 years and absolutely loves them. That is the longest trip she has ever driven by herself so she was very proud to add that to her list of accomplishments.
What about you? Have you had medical conditions that have stumped doctors? Did you ever find resolution?
Who would you drive 500 miles to see in person?
Prayers for you Becky that the Doctor’s can find some answers and the correct treatment for you. Our son has very severe eczema all over his body and he sees a great guy in Sheffield. I had to email this guy and started my email Dear Professor Cork. I received a reply from him and he signed off as Best wishes Mike. He is world renowned for his treatments of Eczema and to say I was totally astonished by his singing off, has to be an understatement. Sending much love to you and your family xxxx
Mary,
Don’t you love it when doctors do stuff like that? I LOVED reading about it.
And how great to have a world-renowned expert close enough to you that your son can see him. That’s how I feel about Duke; even though it’s not REALLY close, it is doable, and at this point in my medical history, that is good enough for me.
And I think you might be a first-time commenter? If so, welcome!!
Becky, I have a pretty severe case of psoriasis and probably psoriatic arthritis. Not sure. But I take one Aleve and when that bottle is empty take one ibuprofen at night and that keeps any pain and swelling away. I took a drug for it for about 6 months but it didn’t seem to help. ( I can look up the name of the drug if you think it will help) So far so good through with the simple meds. I may just have regular arthritis. Good luck getting a diagnosis and hopefully a simple treatment.
Debbie,
A simple treatment would be lovely!
And I also love Aleve because it lasts so much longer than the other OTC pain meds. Glad you have found relief in a fairly simple way!
Becky, I have psoriatic arthritis, at first I thought it was carpal tunnel because it was centered in my hands, but I went to a specialist in Raleigh and had blood work done and they diagnosed me with psoriatic arthritis, I also had psoriasis on my scalp which helped with the diagnosis. They prescribed Humira shots for me every 2 weeks and they helped tremendously. Unfortunately, we had to switch insurance companies and the shots were no longer covered, they run 2000.00 per shot which is ridiculous, so I haven’t had a shot in 2 years but the disease has seemed to slow down….I have lost strength in my hands but the pain comes and goes…..I hope they can get to the bottom of this for you, it is so frustrating not to have a specific diagnosis. My poor husband has had neck and back problems for years, he’s had 4 back surgeries and a neck surgery and is once again in a lot of neck pain. He is trying a new treatment recommended by his sister, who is a nurse, and working with a chiropractor so we shall see.
Dale,
Medical conditions can be so complicated. Between you and your husband, you have had more of your share!
I’m thankful that, even without the expensive shots, your arthritis does not seem to be getting any worse. Big relief! My doctor did look for signs of psoriasis but didn’t see anything so that may be why he s moving away from the psoriatic arthritis diagnosis.
Hoping your husband gets relief from his new line of treatment. Chiropractic treatment can do some amazing things!
Fortunately, I have never had a true medical mystery. The closest I’ve come is it took about 2.5 years including 3 hospitalizations for Demerol treatment to figure out that my intense RIGHT side pain was not kidney stones, but was actually a dermoid cyst on my LEFT ovary.
What fun for Sarah! Not sure who I would drive 500 miles to see – probably more likely to drive that far to meet an author. When my girls were in elementary school, I “drug” them to Fort Worth for “An Evening with Sue Grafton” talk and book signing. While it was only a little over a 100 mile round trip for me, it was about 400 miles round trip for my friend I went with, it was after midnight when we got home and yes, i made the girls get up and go to school the next morning.
Prayers that your medical team with get things figured out. If “anyone” can figure things out, I would think Duke can.
Sue Ellen,
Right side pain with left side cyst? Sounds like a mystery to me! Glad they FINALLY got it figured out.
I loved that you be more likely to drive a long distance to see a writer rather than a musical group. That’s exactly what Sarah did.
Sounds like youhave happy memories of that Fort Worth trip. So fun!
Wow Becky, well knock me over with a feather! This is all so crazy. What the heck is going on? There’s a new show on Netflix called Diagnosis. They take on difficult cases and get to the bottom of what’s really going on. It’s interesting. Dr Sanders uses crowdsourcing to solve medical mysteries.
So glad you are continuing to look for answers and maybe you can stop taking all the meds that arent really helping. Just a little silver lining as this moves along. I am very interested to hear what your pulmonologist has to say now.
As far as our family, well, yes, Sarah was a mystery for 20 years until the culprit(BPAN) was discovered in her DNA. My sister’s family has a weird thing going on that geneticists in Boston are very interested in but have no answers for. All 3 of her sons(in their 20s) and her husband keep getting spontaneous pneumothoraxes (collapsed lungs). Her husband, once, and 2 sons have had it twice and the third son has had it once so far. These require chest tubes, surgery and hospitalizations. They all have blebs (blisters) in their lungs and they get bigger and then pop. Literally. Obviously its genetic but no one has ever seen this before in a family. My sister is hoping someone can find something, otherwise it looks like all her grandchildren, when they come, will be affected as well. It’s painful, scary and since they require medical treatment right away, it is risky to be too far from decent hospitals.
Life is never dull, as we all know. Keep us posted!
Lesley,
Knock me over with the SAME feather! I was pretty flabbergasted.
Your sister’s family’s condition is so crazy. Genetic blisters on their lungs? Wow. I can imagine that the geneticists in Boston are VERY interested in something so rare.
And of course, your 20-year search for the reason behind Sarah’s condition puts your family in yet another rare disease category. I can’t imagine the research, questions, waiting, and wondering you all have done over the years. Keep holding strong!
I believe, if possible, that I would try to have all my doctors at one place. I have had times when different conditions were being treated and it was easier for all docs to get together. The communication between them was made easier and correct conclusion were made.
I had a period in my life when doctors were certain I had lung cancer and following the surgery and much pathology I was diagnosed and treated for histoplasmosis. Following a two year treatment plan and two open lung surgeries, other full time oxygen, I am doing wonderfully. All of this happened twenty two years ago. I know it is difficult to wait for answers, especially correct ones, but I know you are allowing the Lord to hold you close during this time. You are in my prayers.
Cathie,
I had never heard of histoplasmosis so I had to do some reading. A serious condition, for sure. I’m so thankful the doctors FINALLY figured it out and that 2 decades later, you are doing well. (And also thankful it was NOT lung cancer.)
The closest thing I can think of regarding a medical condition stumping doctors was the summer of 1980. It was brutally hot in southwest Missouri – multiple days straight over 100 degrees. I was out of college and working in my hometown, living with my parents. Their house only had a window AC in their bedroom. For several weeks, I had lower right side pain but my white blood count never got high enough for my doctor at the time to think it was appendicitis. His day off was Wednesday. There was at least one or two times he would meet me at the small local hospital ER on Wednesday morning to check me before taking the day off. Obviously you don’t find that anymore, at least in larger cities. Fast forward to January, 1982. I had moved to KC area in May of 1981. One Sunday night, I was having pain and it didn’t dawn on me until early morning that it was the right side. My boss was on maternity leave so I felt like I had to go to work. I made it an hour before going to the employee health nurse – I worked at a hospital then. I was admitted and they did an appendectomy about 8 or 9 that night. Good thing as it came very close to bursting.
Prayers that you will get a definitive answer on the RA along with a new treatment plan if needed. I would agree with seeing a pulmonologist at Duke also.
Trying to think if there’s anyone I would drive 500 miles to see. No one that I can think of offhand. I drive about that far to see my niece’s college Christmas concert. This year her two aunts on her mom’s side who live in KC are going so we might carpool. Since we’re going to the Saturday afternoon concert, we should be able to go up and back the same day. This is her third year and I’ve been to both the other years. I will also drive that far to see her Senior Recital, not sure when that will be but I plan to be there!
Phyllis,
I am so impressed that that doctor would come in to check on you before taking his day off. What a great guy! Glad you finally kicked that trouble-making appendix OUT!
Your niece is so fortunate to have a family made up of fans. I know you must enjoy those outings together and getting to hear her perform. What a treat!
No, no medical conditions that have stumped doctors, thankfully. I can, however, imagine your frustration with your current situation and the past, possibly incorrect, diagnoses. Prayers for correct answers and effective medications & treatments. Soon!!!
We live in Nebraska and our son went to college here as well. We traveled all over several states throughout his college years to watch him play and never missed a game. When he was a junior, we flew to Florida to watch him play in a holiday tournament. It turned out to be a trip that none of us will ever forget because he ended up doing the Heimlich maneuver on a 5-year old boy and saved his life! The child was choking and was turning blue and the parents did not speak English. The father’s signs and gestures led Jack to the child. He was definitely in the right place at the right time.
Way to go Sarah! I love that you have the confidence to go do things that are new to you. I had never heard of Rhett and Link so I Googled them. They sound like what we would like. We’ll have to check them out some time. 🙂
Lee Anne,
What a joy for your son to get to carry with him the knowledge that he saved a child’s life. I loved reading that story.
I bet you put many thousands of miles on your car during his college years but those miles represented so many memories you will never forget.
Becky, I am sending you a big Canadian hug! You have had such a long medical journey and you have been so strong for so long!! This whole process and the uncertainty must be so traumatic for you. You are a role model of grace and strength in hard times. I really hope that definitive and accurate diagnoses are arrived at soon. Having the proper diagnosis will hopefully bring new treatment options that can hopefully bring a little relief of some of the symptoms. Hugs.
Jenna,
All Canadian hugs welcome!
Thank you for your words of encouragement but if anyone knows about complex diagnoses and treatments, YOU do! I have been inspired by you so many times.
Prayers that the Dr’s can find an answer and help relieve some of your symptoms. I took antibiotics before dental visits for 8 years for mitral valve prolapse-the the cardio decided I really didn’t have mitral valve prolapse. My husband and I both have issues that the Dr’s are stumped at. My Dr, who was the best but retired, once told me, “Why don’t you ever have anything normal?” We both laughed.
I once drove 400 miles to see a band that a friend was in. Don’t know who I would drive to see that I didn’t actually know.
Patti,
A normal medical condition. You mean there really IS such a thing? You and your husband and I can certainly attest to all the non-normal conditions.
How fun to drive and see the band of a friend. That is TRUE friendship!
Does it count that we flew over 4000 miles so we could drive the 2448 miles of Route 66 plus additional trips off to Vegas and the Grand Canyon?
Sorry to hear you are having a hard time with your health, praying you will get the answers – and treatment – you need! Sending very English hugs to you! xx
Rebecca,
I am trying hard not to be REALLY jealous of you getting to drive all of Route 66. What an adventure. Maybe I’ll do it for my 60th birthday. Sixtieth on sixty-six!
I think I would most definitely go to Duke for all your issues!!! I know it is quite a ways from where you live BUT this is your life/health. I won’t talk against the other doctors but Duke is “cutting edge” and have so much more to work with and to offer!!! Praying that you can get relief from all your health issues!!! Much love!!
Judy,
How nice to see your name pop up here in Comment Land! 🙂
Since you are a North Carolinian, you are more aware than most of the great reputation that Duke has. And we found that out in person during Sarah’s cancer treatment there. I am getting ready to make a pulmonology appointment there so we’ll see how it all pans out!
I would drive 500 miles to see you and Steve!
I’m so thankful for the compassionate doctors at Duke. And I am so sorry for all the medical junk you’ve had to endure. Here’s to some accurate diagnoses and effective medicines.
You’re looking beautiful!
Love and prayers,
Deb
Deb,
Well, come on, then!
Yes, a compassionate doctor is always a great blessing. I was thankful to be in the care of someone who set aside medicine for a moment to offer comfort instead.
Thanks for the compliment–you are such an encourager.
Been waiting to hear your results. Prayers the doctors will find answers and the right treatment to help you. My cancer diagnosis stumped my primary care and my gynecologist because both had given me a clean bill of health just prior to the diagnosis. God has been good and I know He will continue being with you. Yes, Jim and I have driven to Pigeon Forge to see Southern Gospel Artist. Also to Myrtle Beach but that was not as far. Have a great week as you wait for more answers. Love and hugs and continued prayers.
Ann,
Sounds like you really DID stump a few people on your medical team. So thankful they got it figured out and you have gotten the treatment you need. We are so blessed to have great medical care available.
I know how much you and Jim enjoy your southern gospel concerts. Glad you get a chance to go!