At a loss, multiple consultations still no answer...any idea?

...gosh isnt getting a "good doctor" luck of the draw these days? My trouble is I do not dare speak up when a dr says something out of line .... or offers no help whatsoever.... i think there should be a short course as to how to speak to doctors effectively ... I am sure they learn how to speak to patients in their courses.... and some need a refresher course! J.

I have no problems speaking up for myself and I think that sometimes bad doctors are threatened by that so this one has a God complex I put in a call to every patient advocate supervisor this b#%$h isn’t getting away with this I am in control of my life no one else

...glad you have no problems speaking up for myself, my tongue is covered in scars from biting my tongue rather than saying something... but definitely has been to my detriment.... am just not a quick thinker - once I get home "then" I wish I had said something: good luck in this lee: in a way you are helping others too by reporting bad practice etc. J.

@athenalee I thing I will say this until its the only thing I can remember. It is this: Get a "Whole Genome 30x" analysis from a legitimate genetics lab such as Living DNA, Sequencing.com, Apollo, etc. Then have your doc or geneticist look to compare the reports with your symptoms and signs. Here is the point: If you or your doc think you have something that MIGHT be the result of a genetic defect or situation, look through the genes, probably with Genome Explorer or similar. If you do not have the gene or syndrome or variant for that particular symptom or sign, you are 99 44/100% certain you do not have that. But if you find even 1 or 2 mentions in your genome, it is worth checking further. If you find 5 or more, you had better look more carefully. The internet is filled with resources for this study. Human Phenotype Ontology; Online Mendelian Inheritance in Man; NORD; NCBI; etc etc. At this point, it looks as if your best bet is a good whole genome analysis and a strong geneticist or genetics firm such as Sequencing, Nebula, etc.

Thank you so much if anything comes out of this I hope I can help just one other person I’ve been fighting for myself my whole life I’m not gonna give up but I do admit that it’s getting harder and harder if you need help with an expression or something to say to somebody I’m your girl, I’m so logical and can explain myself so good sometimes It scares me. A lot of my doctors have done what I’ve told them to do. Tell me that’s not scary

...well part time job... we will send you our problem and you can prepare a letter of disapproval , using correct words that will hit home and make the point quite clear - not only with the not so good drs. (as of course there are some amazing ones) but anyone who has been verbally abusive... maybe start up a new company called "I'm Your Go-to Girl" ... or you could write a column in a local newspaper or such, lol I almost could have used you yesterday to stop my adult children buying me an adjustable bed! Take care, J. p.s. Unfortunately "logic" seems to be disappearing at a rapid rate!

p.s. ...just commenting on some of the doctors I have had, in the minority I hope, but some I know I could have sued but we "dont do that" in Canada! We have teaching hospitals but to my knowledge nothing as well known as Mayo Clinic.... wish I could go there! But when I presented to my family dr with all the symptoms of cancer of cervix and he said it was a hygiene problem...well how would you feel? Next DR. said she could not see it etc etc. Thing is by the time I was treated in Toronto six months later, my own Dad in UK had cancer and both in hospital at same time - where he died as I lay with internal radiation and couldnt move for 4 days. Had I been treated sooner, there is a very good chance I could have at least helped my Mum take care of my Dad and been there to say goodbye and attend the funeral. Yes, long time ago but still fresh in my mind. I can understand some illnesses being difficult to diagnoze as have some now, but my symptoms were in the Readers Digest Medical Book I had!!! Come on! Thanks to all the doctors who take their responsibilities seriously... no one is perfect but...... its not a case of suing, its a case of having one's life altered due to negligence isnt it? Thank goodness we have places like his to share illness, diagnosis, tests, etc. etc. Thank you!!

Thank you! I bookmarked the website. I’ll check it out. I signed up for the All of Us Research Program - https://www.joinallofus.org/. You can get a DNA analysis. The closest to me currently is Boston, so I’ve not done it yet. They said they’re expanding their partners through. It’s free and they share the results.

@change25 I don’t know about the States, but in Canada a primary physician has to order some tests based on your symptoms, before sending a referral to a specific specialist. The results of the tests gives your physician a better idea as to which specialist you need to see. The referral to the specialist is accompanied by these test results and a brief note on your medical history.

@athenalee I guess only US residents are eligible to join ...?