Tired of doctors patronizing me because I’m “young and healthy”

Is this a common thing that happens? I’m currently going through the process of diagnosing some unknown autoimmune disease that causes me to have chronic muscle and joint pain and headaches and muscle twitches/spasms. Nobody has any answers for me, they’ve checked me for lupus like 3 times. Just going based off of my bloodwork, my PC referred me to a nephrologist. I have had blood, protein, and ketones in my urine a couple of times recently and pain in my back. I know what kidney pain feels like because I’ve dealt with kidney infections in the past. I periodically will have chest pain and shortness of breath and steep blood pressure fluctuations. I went to the er for that one night and got my blood checked and had elevated bun/creatinine ratio, I don’t know what the number was I was only told that it was elevated. I should not have been dehydrated I had dry mouth that day and drank a ton. I can’t eat too much salt or meat because of this. I have struggled with UTIs and kidney infections for many years, they’ve gotten a little less frequent, and had kidney stones one time. I am deficient in zinc and b12 as well and my potassium was low last I checked. I would say this is more than enough for my doctor to refer me but the nephrologist spoke to me as if I had no right to be there and laughed and told me she bet my tests would be perfectly normal. I’m really tired of doctors treating me this way it feels like they don’t take me seriously and I’m worried that they will miss something. I wouldn’t be wasting my time at doctors appointments if I didn’t feel like I needed to be there, all I want is an answer. It is frustrating. Any recommendations for nephrologists in Connecticut? Do my symptoms sound like anything anyone is familiar with?

[Celtic]

May I ask what age group you are in - I know of certain autoimmune conditions that can arise in those in late 40s upwards? As for the kidney issue, you haven’t by any chance been taking anti inflammatories for any length of time for your muscle/joint pain have you? They are can adversely affect kidney function.

[Hidden in reply to Celtic]

Hi, I am 25. No I sometimes take Tylenol but no nsaids or aspirin. My doctors have told me that my condition is autoimmune they just haven’t given me a specific diagnosis.

[Celtic in reply to Hidden]

If a doctor has specifically said that you have an autoimmune condition, then if it were me I would seek an appointment with that doctor and politely ask if there is any further investigation possible to diagnose which one it is so that it can be treated in the hope of controlling it and, not least, the pain you are experiencing. Having said that, some such conditions can be notoriously difficult to get to the bottom of. Good luck!

[Bassetmommer]

Hi em,

The proof is in the labs. That is what will tell you if you have a chronic illness. Things like infections and kidney stones CAN affect the kidney but you will see the damage in your lab reports. GFR, creatinine and other levels will tell you if your kidney function is impaired and if so how much. Most people do not see a nephrologist unless their function is very impaired such as late stage 3 or 4.

So the question is; were your labs normal?

Doctors do not need to be rude to anyone. I am not sure why this one said she predicted a normal read, but I think that is a good thing. You do not WANT kidney disease.

I understand the frustration of trying to figure out why we feel the way we do. Being a woman of size, I have been discriminated my whole life by healthcare professionals. It took two years of trying to tell my doctors that my joint pain was not from being large. By the time they finally diagnosed psoriatic arthritis, I had some damage done to my joints.

Next time, keep a journal of your symptoms. Write down how you are feeling and where if any pain is. Write down what you did that day and what you ate. This approach is a scientific way that doctors will approve of and you will be helping them to figure out what is going on.

You need to understand that a doctor goes off lab results to diagnose and not just on what a patient is saying. They will go down one avenue for one diagnose and then if that proves inconclusive, they have to try another route. It takes time. If after all is exhausted, they really have little else than can do. Keep advocating but do not take their attitudes personally.

[Zazzel]

I’m sorry you are having such a frustrating time. Many of us have been there. I spent 20 years of feeling miserable on and off with most of my doctors giving up after labs came back normal. I finally found a good integrative doctor and then a DO who both were more open to resolving my issues. You might consider looking for one of those types of doctors say they are more investigative about their approaches.

Although your symptoms could be related to many different conditions, I can relate to all of them including muscle and joint pain, chest pain, shortness of breath, fluctuating bp, blood and protein in urine etc. Mine were caused by several things- exposure to black mold, food and environmental intolerances and allergies ( note intolerances are not the same thing and can show up hours or days after subjecting yourself to the food or substance so harder to identify). Also, chest pains and shortness of breath caused by misalignment in my chest area. Poor posture and less muscle tone in my upper body has caused all kinds of upper torso pain issues.

Changes that I made were - eliminating highly intolerant foods for me ( the hard part was figuring out what foods I was intolerant to), eating foods I was moderately Intolerant to only on occasion, changing diet to a lower inflammatory diet, increasing Omega 3 and decreasing Omega 6 - this means giving up processed foods and oils high in Omega 3 and adding flax oil and fish oil, reducing sugar and sodium and eating more fruits and veggies and Whole Foods. Exercising and doing strengthening upper body work ( though you there is a risk for those doing heavy body building with CKD, but I don’t use heavy weights), and getting adjustments to make sure my body was in alignment then focusing on relaxing and reducing stress.

I have IGA Nephropathy ( a type of kidney disease) which my DO and Nephrologist both think was either caused or made worse from my food and environmental intolerances. IGAN can be caused by other things as well. Here is more info on it. You might discuss it with your doctor mayoclinic.org/diseases-con...

Your body is telling you something isn’t right. I hope you figure it out soon.

[CatOnACloud]

Yes. It’s a known phenomena, age discrimination in the drs office! I have experienced it as my rt kidney had constant infections and I had UTIs— all from the age of six until the damaged kidney was removed when I was seventeen. USA. A birth defect in the ureter caused an obstruction. I cried in drs offices from the pain, waiting in emergency rooms sometimes for twelve hours, writing in pain. They asked why I was crying. They never listened to me and it was discovered by ultrasound once i was pregnant. It should have been an easy fix... so yes, I experienced consistent, egregious age discrimination throughout my life. I’m 47 now, and the one kidney left ain’t doin so hot. I think they treat me better now and I have well noticed the difference. Stick to your guns, stay calm in their site, and call them out on it! “Just because I am young doesn’t mean I am healthy. My tests are not normal. Tell me why.” It’s a huge obstacle and from your post here you should be concerned! Why all the infections? You need to get your ureters and kidneys checked out in a scan or test. Because i had a long gap between one kidney disease and this new one CKD i am unsure of the new tests... perhaps one of the helpful peeps can weigh in on those? My nephrology appt isn’t until end of month. Ive been waiting...

PS: Try not to show emotion. Easier said than done!

[CatOnACloud]

PPS: Have you checked out Fibromyalgia? It can be as insidious for some as an autoimmune issue... just a thought I had when reading your post

[boon1]

You are not alone bro.I too am in a similar situation ! I am 26 .I Had breathing difficulty .I went to the doctor and had high BP(now under control) . Ultrasound was normal,Random urine test was normal(no creatinine,no protein)

My symptoms grew, now I also have nausea,edema over eyes,weakness,white bands on nails. After about 10 months .. 24 hours urine showed protein 395 . creatinine 1.35 . My egfr was 72 .

And I have NO IDEA how my kidneys went from "ok" to "not ok " in just a few months. My doc said I have lost some kidney function but there is nothing too worrying. But something just doesn't sit right with all the symptoms .I am considering asking about a kidney biopsy on my next visit. At the end of the day we are all dependant on the doctors!

[NeedHelpAlso]

Yes, age discrimination and other types. Find a nephrologist who will take you seriously. I know easier said than done but your life-expectancy depends on it, as well as quality of life. Also see a cardiologist. Heart and kidney health are intricately linked which your nephrologist should told you. Tell that damb nephrologist you don't want to wait until stage 3 kidney disease, you want to prevent CKD. I'm ticked off for you! High b.p. damages both kidneys and heart. Your PC should have referred you to the cardiologist.

Also, get copies of your blood work. Learn what they mean. Take them to a dietitian and ask how to improve your numbers. You CAN slow the progression of disease. Do your own research! Your body is depending on you.