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Dismissing doctors: How do you find a doctor who can help?
Bones, Joints & Muscles | Last Active: May 24, 2022 | Replies (102)Comment receiving replies
I've seen Pain specialist, Orthopedic specialist, Internal specialist, Rheumatology specialist, Gynecologist, Infectious Diseases specialist, Psychology specialist. I have had MRSA for over a year, Shingles around my eye and been dismissed that it was something else, UTI's, BV(Gardnerella -which during my yearly I had to beg, plead and argue with gynecologist to test for something cuz things were not right, after she kept giving reasons and excuses to explain my reasons away to test me ...hmmm... I was right...GRRR), Polymorphic Light
Eruption, Carpal Tunnel, Plantar Fasciitis, Thrombocytosis, Fibromyalgia, Psoriasis(on and off since I was 2), Multiple fatty deposits on my head, High Cholesterol/Hyperlipidemia Mixed, Mono, Strep throat(even had Mono and Strep at the same time), Hernia at age 7, Heart Murmur when I was 6 months old and it went away, celulitis, Gastrointestinal infection, IBS, Hyperthyroidism, Hypothyroidism, Vitamin D Deficiency, Adjustment Disorder Mixed Reaction, Depression/Anxiety, Depression Major Recurrent Moderate, Koilonychia Acquired, Migraines, Neuropathy Peripheral, Numbness Hand, Raynaud's in hands and feet, Scoliosis, Pain in Lumbar and Thoracic, Pain in both shoulders, Sacroiliac joint dysfunction, narrowing of C5-C6, minimal straightening of Lordosis, degeneration of my facet joints, sclerosis of the greater tuberosity, lazy eye, Thrombocytosis Unspecified, kidney stone, ringworm etc. etc. etc.....lol...I have done a immune system genetics test which came back not finding any pathogenic variants but found 4 variants of uncertain Significance (Variants they don't know enough about to determine any pathogenic relation to disease). I have all these issues and symptoms but tests always seem to show negative or I am missing the 1 or 2 significant criteria in order to be diagnosed for any diseases that are so close to anything! I don't have Lupus, Hashimotos, Psoriatic arthritis,
etc...etc...etc... They have never scraped my skin to test for a negative or positive identification for psoriasis so then when I go to Rheumatology specialist and he sees no evidence of psoriasis( because it is in dormant state) and nothing in records except me saying I have had it I am made out to be crazy or untruthful or making up stuff! Also after 3 separate
radiologists with 3 different xrays in a span of 4 years that state there is small erosion of my bone on finger the Rheumatologist states in my record that he looked over one said xray and saw no evidence of small erosion!! WTH. Patients should not be expected or have to doctor sit and battle over things that we do or don't know to try and fix ourselves or get them to step up to our plate! Sorry this is just a cycle of the lifelong continuation of frustration, disappointment, dashed high hopes of getting answers or getting better but I know I am not the only one . It feels good to vent a little and be emotionally validated.
Replies to "I've seen Pain specialist, Orthopedic specialist, Internal specialist, Rheumatology specialist, Gynecologist, Infectious Diseases specialist, Psychology specialist...."
Have you seen an immunologist?
After seeing so many specialists, I would again also suggest a functional medicine doctor who will look at the whole picture rather than specialists who are kind of siloed in their particular area.
I wonder if the Epstein Barr virus (mono) is causing issues for you. It remains in the body and can create problems for some.
Wow! Actually someone else out there that sounds exactly like what I am experiencing.
Obviously different circumstances but the same issues.
In my case, the last 12 years, 14 surgeries later, 7 wrong diagnosis, more medicines than I can count prescribed that were not needed, months upon months of pic-lines due to 2 separate infections in my body that went un-diagnosed for 3 years because I was not believed and even after they discovered them, no apologies for calling me a liar, drug seeker, hypochondriac, faker, psycho, etc. etc., and even 5 seperate doctors telling me they did not want me to come to their practice anymore, including one of which was my Christian brother that I still see every Sunday at Church, one of which I paid $1600 a year just for the privilege of them being my doctor, to where I am now; which is, dismissed as a mental case just because the medical community has been unable to find, treat, fix or even help me.
Today the icing on the cake, went to a new doctor that was highly recommended to me to be my PCP, by an employee who has been a personal friend for 22 years. After only 10min with this doctor I was told I had to prove myself 1st before they would take me as a patient. 1) Wants me to provide a letter from my pain management doctor that I really am their patient and that they really do prescribe oxicodone to me for pain. Then 2) requiring a letter from a Psychiatrist that they have preformed a psychic evaluation on me and that I'm sane and of sound mind to make my own decisions on my medical care and that I am lawfully taking Aderall for exhaustion.
Just amazingly arrogant and very embarrassing to one's character, credibility and ethical make up!
Just a crazy world we live in where you pay to be treated like this. Where someone who is suppose to be a professional can still be paid for being 100% wrong and even if they hurt you can still get paid. I truly realize now why it's called a 'practice.
In my business, if I do something wrong I don't get paid or at least I have to fix it. Plus, having pride in my work and in myself, being an ethical person, would not accept payment if I did not deliver a quality product especially if it was the wrong one or if my customer was hurt because of it.
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Hi 7lilsnkr, I'm reading down your list of medical issues, and it reads so much like mine does - I have been "diagnosed" with many of the same items on your list. (I would name them but it would be much of the long, long list.) I also am frustrated by the difficult journey of diagnosis.
Many of your medical issues are also compatible with those that have Primary Immunodeficiency (also known as PID) patients have. One in 10,000 have a PID. That statistic alone makes it difficult to get a diagnosis. I have a subset of PID, Common Variable Immune Deficiency (CVID). About 1 in 25,000 have CVID. I was finally diagnosed at age 65. Your comment about Immune genetics testing makes me wonder if your Immunologist was leaning that way. Genetics testing, though, is not how most PID patients are diagnosed. It requires antibody testing, IgG, IgA and so on. As I mentioned in an earlier post, got my initial "hint" through my Endocrinologist. Generally, Endos don't do immunology treatment, but it got me on the right track for PID diagnosis. The number of PID cases are so small that there are few doctors that specialize in it. I struggled to find the right doctor. In the Pacific Northwest, there is a concentration of immunologists that specialize in antibody deficiency testing and treatment at Seattle Children's Hospital. I learned about it when I called and asked them for a referral for an Immunologist. I was told they take adult immunology patients. The Immunologist worked with my Primary Care to do preliminary blood work. This was a deeper look (than the Endo) to see if I had blood work showing I had any condition that looked like deficiency. I passed, or failed, depending on how you look at it. This allowed me to be taken on a Seattle Children's Hospital patient. My first appointment, blood work at an even deeper level was done. When that blood work came back it showed I have CVID. With that diagnosis I began treatment and am finally beginning to feel better.
I can't possibly diagnose you but I hopefully the information will help in your search. You might also look at the Immune Deficiency Foundation. They have an excellent website with lots of information.