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DiscussionAt a loss, multiple consultations still no answer...any idea?
Autoimmune Diseases | Last Active: Nov 28, 2023 | Replies (338)Comment receiving replies
Replies to "@becsbuddy @jwillits8, hey everyone sorry for the late reply I've been on a narrowboat for the..."
I understand how you feel. We went to the mayo in Minnesota in THE WINTER where it didnt go above 35 below zero. We drove from long Island NY in snow,ice to get to our appts. After seeing a nephrologist, my 22 yr old son has chronic kidney disease, I found out they were.no better than any hospital. Appts were made 1 a day,so we had all day to do nothing after the appt. Why couldnt they schedule multiple appts??? Who knows.We never had 1 Dr call us back for another after blood work was done.I had to find out the results off the patient portal ,Im an RN and can read them but I AM NOT A DR. One reason was we wanted to see a dietician, THAT NEVER HAPPENED!! It was an absolute wast of time and the Hotel connected to the hospital was filthy. My advice keep looking for a new Dr,there has to be someone out there that still care.We just went to a " new" nephrologist,another wast of time. Ive come to the conclusion that they have no idea what is new,since I know more about it at this point.Dont give up,Its your life,to them we are just a chart number. 🙏you find the help you need.
@change25 ... I am not surprised at all. I was told for three quarters of a century that there was nothing wrong with me, except that I had some psycho problems. Well, I know I had psycho problems. I just call these psycho problems my lazy doctors. Then I started digging into my genetics. Now, after the testing, I know that I have a pot full of diseases, mostly cancers, urinary and blood and nerve diseases. I have have the genetics for many forms of cancer, from Bladder to Lung to skin to brain cancers of different types. Medicos have remove about half my guts now, along with some stuff they cannot remove. And I am left with the remains of 53 cancer surgeries, mostly Heart, lung, bone, blood, brain, and facial skin. Melanoma, carcinoma, papillary, basal cell, etc. My suggestion? Demand a Whole Genome Analysis genetically. And if you cannot do that for some reason, at least get the mini-exome analysis. Then get Sequencing.com to run it through their processes in their Genome Explorer. For the price of a tank of petrol you should get a good start on what you need to know. And look at every hit on your analysis. You will end up with a few thousand hints as to what is wrong. THEN if you don't get some clues, it is your own fault that you did not do all the work. I ended up with about 200 pathogenic and another couple thousand possibilities oldkarl
@change25, I’m very sorry for your ongoing suffering and medical battles. For more than a decade I reported various symptoms to my general practitioners, which were ignored. By the time the one autoimmune disease was diagnosed, I had stage 3 liver disease, which led to a liver transplant and now the other has resulted in constant pain and peripheral neuropathy.
Sadly, you’re in a lot of company when it comes to doctors who don’t want to explore out of the “norm” of cancer, heart disease, etc. and truly help to find diagnosis for the rest of us so that we can avoid years of physical and mental anguish. I know there are providers out there that do think out of the box. May you fine one soon!
I have been extremely sick over the last 2 years with a multitude and I mean over a dozen symptoms that affect me from head to toe yet everything is coming back normal and I've been through several neurologists and several endocrinologist and cardiologist and gastrologist besides my primary care doctor and everything comes back normal but I feel like I'm one breath away from death that's how sick I feel and it's a daily struggle.
I am absolutely shocked at the lack of attention or the lack of understanding from all these specialists and doctors and how many of them are very nonchalant and hands-off and want to get you in and out of their office quickly and write you a prescription for anxiety or antidepressant always trying to blame it on stress or anxiety. That's the easy way out and that's the way out most of these doctors take because they just seem like they do not really want to put any effort into finding out what's wrong unless it's an easy way like an MRI telling them exactly what's wrong.
So every day over the last two years after paying sky-high medical insurance cost and co-pays and deductibles, paying these outrageously high medical insurance cost I feel like I have half a$$ed treatment by so many doctors. What exactly am I paying for with these sky high medical insurance premiums when the majority of these doctors just many of them seem clueless and they just don't want to put any real effort into finding out what's wrong and they just want to blame it on stress. I'm literally fed up with the whole system.