Dismissing doctors: How do you find a doctor who can help?

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.

what are your symproms and how do they affect you if you don't mind me asking. I am like the lady that posted the problem.I have constant stiff muscles and now Osteoarthritis everywhere with Erosive type in my hands. Tendonitis in feet/ankles,neck and shoulders. If one pain calms for a while lets say in my right shoulder then my left picks up the pain to keep me on my toes. I started with pain in my right shoulder girdle/neck when I was 29yrs old within hrs of giving birth to my 4th/final child I am now nearing 69yrs old with not one day of being anything but riddled in pain from these stiff muscles,they feel like they made of thick old rope and are being twisted. I demanded being referred to a rheumatologist but although a lovely man they don't deal with Osteo so sent me on my way with a plan of meds which didn't work. How is it there isn't a specialist for this. I go to the pain clinic for nerve ablation but any other shots in my spine don't work and they don't really deal with anything beloew the neck and above the lumbar area.

You know it is just amazing to find your own journey in these posts. I have a friend who, after being dismissed from doctors and running around to all kinds of specialists, it was also an Immunologist who helped her. By diagnosing Lupus. Another autoimmune disease. I am tempted to drive to her city and go to him. And, when did it EVER become okay for doctors to dismiss patients they couldn't cure?????????

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.

Now that "... when did it EVER become okay for doctors to dismiss patients they couldn't cure..." is an interesting question. I asked my RN daughter who has worked in several large general and specialty hospitals.

Here is what I learned:
"It is called scope of practice. When you have a specialist, of any kind, they have a narrow "scope of practice" - sometimes dictated by the organization (clinic or hospital) where they work, other times by their comfort zone, and sometimes by their malpractice insurance and sometimes by the patients' insurers." And when you have a family doctor, Nurse Practitioner, Physician Assistant, Physical Therapist, etc - each of them has a defined "scope of practice" as well - for many of the same reasons.

So, in this age of specialization, if a doctor cannot help, you get sent to someone else.
The difficulty for patients is immense, especially in areas where there are not large integrated group practices, where the doctors can refer to others within their group.

My husband just experienced this in our winter home - serious bladder/kidney infection sent us to Urgent Care. After 2 rounds of treatment, the doc said "go see a urologist, here is one we recommend." I called, and they said "we can see him in 4 months" - Whoa, this guy was in intense pain and really sick! So after several tries, I was switched to a nurse, who said "Take him to this ER, if he is as bad as you say they will get him an emergency appointment with us." So that is what I did, and he got basic treatment and an appointment in 7 days - follow ups were tougher, but he was flexible.

I'm sure there is a good side to this - doctors who are not familiar with your condition don't "spin their wheels" costing you time and money without a solution. But that's no consolation when you cannot get an answer.

That is why you will often see people here suggesting that if you have been looking unsuccessfully for answers, it is time to find a large multi-disciplinary hospital or clinic where they have the specialists available to evaluate everything - Mayo Clinics (https://www.mayoclinic.org/appointments) is one, but there are others like Baylor in Texas.

Have you been seen in such a practice?
Sue

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.

Now that "... when did it EVER become okay for doctors to dismiss patients they couldn't cure..." is an interesting question. I asked my RN daughter who has worked in several large general and specialty hospitals.

Here is what I learned:
"It is called scope of practice. When you have a specialist, of any kind, they have a narrow "scope of practice" - sometimes dictated by the organization (clinic or hospital) where they work, other times by their comfort zone, and sometimes by their malpractice insurance and sometimes by the patients' insurers." And when you have a family doctor, Nurse Practitioner, Physician Assistant, Physical Therapist, etc - each of them has a defined "scope of practice" as well - for many of the same reasons.

So, in this age of specialization, if a doctor cannot help, you get sent to someone else.
The difficulty for patients is immense, especially in areas where there are not large integrated group practices, where the doctors can refer to others within their group.

My husband just experienced this in our winter home - serious bladder/kidney infection sent us to Urgent Care. After 2 rounds of treatment, the doc said "go see a urologist, here is one we recommend." I called, and they said "we can see him in 4 months" - Whoa, this guy was in intense pain and really sick! So after several tries, I was switched to a nurse, who said "Take him to this ER, if he is as bad as you say they will get him an emergency appointment with us." So that is what I did, and he got basic treatment and an appointment in 7 days - follow ups were tougher, but he was flexible.

I'm sure there is a good side to this - doctors who are not familiar with your condition don't "spin their wheels" costing you time and money without a solution. But that's no consolation when you cannot get an answer.

That is why you will often see people here suggesting that if you have been looking unsuccessfully for answers, it is time to find a large multi-disciplinary hospital or clinic where they have the specialists available to evaluate everything - Mayo Clinics (https://www.mayoclinic.org/appointments) is one, but there are others like Baylor in Texas.

Have you been seen in such a practice?
Sue

I will add something that a doctor told me about going to the ER. He said to always go by ambulance if something is even a little serious as patients arriving that way get the most attention. I've never had to rely on that advice but remember it just in case.