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

@becsbuddy @jwillits8, hey everyone sorry for the late reply I've been on a narrowboat for the past few weeks and decided to go technology free for the duration of the trip.

I had a nightmare trying to get my MRI results released and as my follow up was approaching I decided to leave it. To my disbelief the neurologist said that my result were normal, so why the wait? Along with saying headaches were normal... to say I'm fuming is an understatement. They've released me back to my GP with some painkillers.

I'm just in the process of booking an appointment with mayo in London though my GP is still sending me for some further blood works and a urine sample. Once I've had those I'll be heading down. I can't comprehend how everything has come back okay when I feel how I do - it's extremely frustrating.

@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!

@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!

Exactly which isn't right, you did the right thing and either due to negligence or laziness they weren't willing to do the leg work which would've resulted in a much better prognosis for you. There's certain things Dr's are brilliant at but when it's rare or unusual most seem to falter.

I did see a really good connective tissue specialist and they sent a letter to my Dr and based on my symptoms they are fairly adamant that the cause of my problems is pheochromocytoma. My GP has followed this up so now it's just another waiting game. Still can't comprehend how a neurologist can comment saying severe ongoing headaches and facial pain is normal if that's their mindset I'm glad they've released me anyway.

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.

@athenalee.. Your story could be mine, except that my chronic liver disease has now progressed into stage 4, and the total of my cancer surgeries and procedures is now 53. Probably hit 54 this week. oldkarl

OldKarl, I admire your steadfastness at figuring out how genes impact our health. I’m realizing that more and more. And, how unfortunate events, like infections, in our lives can trigger our genes to cause disease. And, in my case, Sjogren’s was triggered and has gone rampant in throughout my body following my liver transplant.

@athenalee , Thanks, my friend. As I learn more and more about genes, I become, like you, more aware of stuff I reLLY DID NOT SEE EARLIER. Whoops, the cat just decided to help me. Anyway, Sjogren's is one that really makes a mess out of many diseases which would be almost irrelevant otherwise. LGMD2m, AGel (GSN), Cardiomyopathy, CPVT. Lissencephaly, Clarkson's, etc. Chronic Leukemia. And infections and many environmental issues just add to the pile. All this can take a simple issue like cancer and make it just awful. I apparently am getting ready to undergo another basal cell removal from my face. 54th cancer surgery. And for some better understanding of what we go through with Sjogren's and this other stuff, watch "Apollo 13" again, and pay attention to the emotions, especially of the men and their families as they struggle with their lives and events. Take care. @oldkarl

@joannemm30809 i just saw this article in the Mayo Clinic blog section. I thought of you right away because it talks about dysautonomia. I’d the link doesn’t work, look on the right side of the Connect home page where all the current discussions are listed.

EDS and POTS | Mayo Clinic Connect https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/eds-and-pots/
Have you found any doctors in south Florida who can help?