Image of woman shrugging with a questioning look on her face.

Did You Ever Get The Proper Diagnosis?

I just want to say, don’t settle for an “I think”. I’m so tired of doctors saying I think, we’re not sure, let’s do more tests. We are living in a time were we have so many diseases with so many of the same symptoms. It’s getting very frustrating for me to go to the doctor year after year. They do all these tests and tell you that you have a particular disorder… they think. You are then prescribed a prescription and told to come back in three months. Okay, I have come to grips with this, year after year, but what is my diagnosis?

Having an invisible illness

I have been told that I have an invisible illness. Why keep fighting for this? We have so many mountains to climb. It’s a journey for most of us has had to travel for years and spent thousands of dollars getting here.

Years past by and you start to get more symptoms down the road and you end up going to a specialist. The specialist begins to have a one on one with you. At this point you discuss your other medical problems and the doctor decides he or she wants to run tests, draw blood, and give a referral to see a physical therapist. How many tests can you get in a lifetime?

All in my head?

I’ve given more blood than I care to remember, have been poked with needles all over my body and had six biopsies. I remember when I was younger that a doctor told me it was all in my head. I have learned over the years that a lot of young adults get that remark. I was even told by a doctor that this was out of his expertise – so why are you pretending to treat me?

I was confronted by several doctors who question my diagnosis. I have had this experience more than once. It’s horrible when you are questioned about the medications your other doctors prescribe for you. Do you challenge the physician that stands before you or the doctor who gave you the medications? It makes you look foolish and you’re at the point and not knowing who to believe.

I think so many of our illnesses mimic so many other things. For example, before I got a diagnosis of psoriasis, doctors didn’t have a clue. I was told several things and given wrong medications that didn’t work.

Advocating for ourselves

It’s our responsibility to question doctors if we feel they have misdiagnosed us. It’s a good idea to get a second opinion and sometimes a third or fourth. I’ve seen for myself first hand, where one of my doctors makes a telephone call to another one of my doctors to confirm a diagnosis and the first doctor will question and challenge the second doctor.

There comes a point where you may have to test and test again. It can take a long time to confirm some of these diseases. A lack of diagnosis could lead to patients not getting approved for needed tests or treatment options.

I have often ask myself, why does the right diagnosis matter? Why do I really need to know at this point in your life? Just give up. I will never give up. I need to fight for a better quality of life for my family, friends, and for myself. It’s sad to say that some of us will never get diagnosed properly and always have to suffer the uncertainty.

Remember, question your doctor; get a second opinion. If your doctor is not doing the job you are paying him or her for – find a new one! If I hadn’t changed doctors so many times over the years, I would have never gotten the proper treatment or diagnosis. I would just be stressed out and still wondering.

Getting the right diagnosis

When you get the right diagnosis, it’s like hitting the lottery. Everything starts to make sense. You just want to say, “I told you so”.  Yes, a diagnosis does matter, but remember what the end results should be, to have a better quality of life. Many people are being wrongfully diagnosed and being prescribed unnecessary medication. Exercise your rights. It’s your health and you’re right to get the proper diagnosis and proper treatment. Don’t just settle for “I think”.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • NoniB2
    6 months ago

    I was very fortunate as far as getting diagnosed correctly; by coincidence had appts with both my rheumatologist and my dermatologist the same day, in same building. Derm looked at my foot and said, palmo-plantar psoriasis, took biopsy that was positive. Then went to see the rheum and complained a lot about the pain in my feet, told her about the new diagnosis and she slapped the side of her head, and apologized for not seeing sooner that I had psoriatic arthritis. (She is the doctor who earlier diagnosed me (finally, after many internists, GPs, derms, etc.) with mixed connective tissue disease, confirmed the fibromyalgia diagnosis from another doc 10 years earlier and said she thought that it probably began as DFS following Lyme disease. And diagnosed full-blown osteoporosis and anemia, so I went to my internist and said, “This isn’t right; I should not be osteoporotic, fit NONE of the risk factors, so what’s the deal? He did a workup, sent me to a GI specialist= celiac disease. These issues, along with the Hashimoto’s hypothyroid disorder, just tell me that once you have an autoimmune disorder, you’re probably going to have more than one! I’ve never misused any substance, live a ‘clean’ lifestyle, but worked very hard as a nurse, wife/mother, trained horse, (broke foot off leg doing that)…and the parade began. I do get very tired of this mess but I don’t like the alternative eh. Grateful for good days, just deal with the others by ignoring it all as much as possible and keep on keeping on doing things I enjoy or, especially, things that help other people. Ask questions! I knew for many years that something was wrong, beginning when I was 12 years old; didn’t start getting answers until I was 20 and have been doing my own research and finding doctors who didn’t diagnose me on the basis of my demographics!

  • Cece85
    6 months ago

    NoniB2,
    I also have PPP w/ PsA. I was diagnosed with PPP rather quickly but because of the cost at treating this my insurance company made me jump through so many hoops before I was able to get on my current treatment (which, for the most part, helps). My dermatologist and rheumatologist are really on top of this disease. The frustrating part is working with my other specialists concerning the other symptoms I
    have that are connected with inflammatory autoimmune issues. Chronic dry eye and IBSD… I also have Hashimoto’s. Why can’t they all pull it together? Some days I feel so full of inflammation I just want to curl up in a warm bed. I have always be mindful of my diet and exercise, but with this joint pain I often can’t even do yoga. Thank you for sharing your story. So many of us out here looking for answers to the ‘whole body’ picture.

  • Diane T author
    6 months ago

    WOW!!! I’m glad that they were able to narrow yours down. The one thing that I have learned all these years is to see different doctors. I was told by a rheumatologist to stop seeing so many doctors. This is how I find out what I have and don’t have. Nobody ever gives me the same answer. I have had to deal with this for 55 years. I just laugh now. I’m with you; we truly have to do our own research and find doctors who “get it”.

  • OnHotH2o
    6 months ago

    After 40 years, I STILL do not have a definitive diagnosis, although my chart says I have Sjogren’s Syndrome, Rheumatoid Arthritis, Spondylosing Ankylosis, Undifferentiated Connective Tissue Disease, and a raging case of Psoriasis. My “RA” is not symmetrical; in other words, the joints on my left hand are not affected in the same way as those on my right. To my understanding, the RA is a misdiagnosis, and what I actually have is Psoriatic Arthritis. When I explain that to my rheumatologist, she merely smiles and does not respond. Grrrr!

  • Diane T author
    6 months ago

    I know how you feel. After 55 years I am still looking for 2 doctors to say the same thing. I actually went to my rheumatologist yesterday who say my PsA is in remission after 35 years, but I have developed fibromyalgia. I ask my doctor if he had a definite diagnosis that would leaves no doubt as to what I have? I’ve always had various auto-immune problems in my life so it doesn’t surprise me on any diagnosis but I am concerned. So do I have psoriatic arthritis or fibromyalgia. How does one really know?

  • Mr Benn
    6 months ago

    Trouble with me is they don’t know what is wrong after seeing nearly every type of dr there is. They are certain that i have a CFS and PsA. They also understand that I have an intolerance to 99.9 percent of food. This is what is causing me so much pain from the spleen to the anus. But there is no dx for it. It was caused by taking PPI’s and SSRI’s together. Now drs do not prescribe together as they know it affects humans badly. So badly that the humans affected are now totally useless to society. Im one. And now even with that reality th gov UK doesn’t want to look after me even though their responsible for all of my conditions as the CFS was caused by the injections I had before my passing out parade in the Royal Navy.

  • Diane T author
    6 months ago

    Hello Mr. Benn, I can relate to what you are going though. It took me 25 years to get the proper diagnosis for PsA. Never give up; one day someone will get it. I hope you get better soon and find someone to help you. Keep your head up, it will get better.

  • Mr Benn
    6 months ago

    Thanks Diane T.

    Understanding (not sympathy) is all the difference between depression and no depression.
    I appreciate your thoughts!

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