When I read these discussions and so often see myself in many of the symptoms described herein - my SLE diagnosis last summer and the many, many issues I’ve simply attributed to getting older - make so much more sense now. To me, but my rheumy doesn’t seem to be the slightest bit interested in anything that “was” and is very dismissive of anything I tell her I’m experiencing aside from “squishy joints”. BTW: my current rheumy is my second opinion rheumy. I have an appointment with my current rheumy Jan 21. And, before I go to this appointment I need further education from those of you who have “been there”.
Those of you who have diagnoses in addition to Lupus (cognitive issues, etc) - how was this secondary diagnosis achieved? What tests if any were done?
Did you have to be a “nag” to obtain item 1?
Very interested in hearing from you. So grateful for this wonderful, intelligent and supportive group. Wishing you all happy holidays.
In all sincerity yes be a nag or whatever it takes until you are with a doctor that has compassion, knowledge and Ned side manner. I the 14 yr that I've had this disease I am on my 4th rheumatologist, 3rd hemotalogist, 2nd orthopedic surgeon and 3rd cardiologist. My primary care doctor is the only one I've ever had and she knows of all of my history. I've had to change doctors for various reasons from one telling g me my prognosis was death to one even firing me as a patient (I didn't even know they did that) bit all in all I am one of many patients for them but I am my only concern so with my own research, trusting that uncomfortable feeling I would get when I felt that I was not being heard and doctors refusing to change my medication after I either told them they are not working or the side effects were worse then the actual problem I have finally found my "Dreat Team" but it was In no way a simple fast or easy process. Some doctors I had to wait months to get in for a new patient visit but once I was in it was well worth the wait. We deal with so much and I personally don't talk about half of what I feel with family and friends so my doctor or therapist has to be my sounding board and they have to be honest with me and put me to ease at the same time. Think of it as finding your spouse. Hopefully you wouldn't settle in that arena so don't settle in this one. Good Luck to you!
I was first diagnosed with Fibromyalgia in June and just recently diagnosed with Lupus SLE in November. I was fortunate when I complained to my family doctor he took steps right away because mu sister has Grave's disease and Hashimoto's and my mother has RA. I was sent to a Rheumatologist right away and she was persistent that I had Lupus in June and started testing me then. I know from reading most discussions that most people have difficulties getting diagnosed and getting a rheumy to support them. So sorry you are going through this, be persistent!! Don't give up!
I have yet to find a rheumatologist that isn't dismissive about most of my symptoms nor are they knowledgeable about the SLE or even more so the Sjorgren's Syndrome. The city I now live in is even worse and I travel back to IL from IN to see my internist for testing. You have to research for yourself. There is a wealth of info here and on the web. I am looking into more alternative care and so far where I am going there is more knowledge there then any MD I have seen. I am seeing a Chiropractor and NP in the same office. I can't remember the tests I had to reach the diagnosis. Sorry. Best of luck.
I have heard of doctors firing a patient which is actually they quit there job. After all who is paying whom? Essentially you are the employer because without you and others the doctor would have no income. They are so arrogant!
A doctor of functional medicine is interested in getting the whole picture.
As for the plain old rheumatologist, I make a list of symptoms I’ve had since previous appointment and bring that. Because I can’t possibly remember everything and don’t want to try. You can use the app “symple” if you have an iPhone, for tracking symptoms. If you do not have an iPhone you can use a paper system. I created one you can use (free) at http://www.thesingingpatient.com
I do keep a “journal” wherein I record daily where I hurt etc and rate pain 1-10 for each day. I also record any new symptoms. But as I said, all my rheumy is interested in is “squishy” joints - as if any other lupus related symptoms don’t eneter into my equation. I will check out your links and thank you for sharing.
I was diagnosed with SLE in April of this year after a life long issue with odd symptoms that a friend of mine put together when I was in nursing school. It wasn't until after I had my gallbladder removed and my physician being changed due to the wonderful Army healthcare that I was able to get my diagnosis. It all started when I was 9 and my platelet count dropped dramatically. Ever since then my platelet count has barely reached normal limits (125,000 - 400,000). My last CBC showed a count of 150,000 which I know has dropped since then because I have random bleeding gums and bloody noses in my sleep again. I was constantly sick as a child with strep throat, I got hand, foot, and mouth disease at 17 (that is a disease found in children younger than 5), fungal infections on my feet from walking through grass (not athlete's foot), migraines, photo-sensitivity (started at 11), extreme joint pain in my hands and feet, random fevers with no other symptoms that last not even 24 hours, and this is to just name a few. Now I have the ugly butterfly rash that I found awesome concealor to cover up. Even though it's not dark, the skin looks tough where it is and noticeably not the same color as my complexion.
Although my ANA was negative, my physician did another blood test with came up to >2.8 but I'm not sure what it was called and he said I was positive for Systemic Lupus. He accounted my negative ANA due to not being in an active flare up. The only thing he recommended me to take is Celebrex 100 mg twice a day and Caltrate supplements. He also said that I should have my first bone density test (DEXASCAN) at 30 instead of 40.
All of the other vitamins I take I started at the suggestion of my father in law. He has a book of natural remedies and so I started using natural supplements. I can't tolerate multivitamins which would save me a ton of money, but I can tell the difference between when I take them and when I don't.
Functional medicine docs are not always MDs but are merely required to be in the healthcare field. The training consists generally of online courses, and the curriculum is not necessarily evidence based. What is more concerning is that some practitioners with limited to no formal training or experience with autoimmune disease, such as chiropractors and naturopaths, feel empowered to step in the place of rheumatologists to counsel lupus patients. Good nutrition always makes sense and can certainly help with inflammation, but nutritional advice will never get rid of the need for monitoring by a rheumatologist.