Dr's give me no hope. I need help!

[TaraRae]

I'm not even sure if I am in the right group? I have multiple diagnosed health problems including, 25+ years of Hep C (was a "lab rat" for Dr. Everson at UCH CO. 5 rounds of interferon A, pegalated interferon and riboviran and betaseron and my genotype 2 didn't respond. Dr. Everson chose Epclusa for my last treatment and I am currently viral load free) cirrhosis of the liver, splenic vein calcification leading to pancreatic head, tail and calcification throughout my pancreas. I have chronic pancreatitis, low platelets, low WBC, hemochromatosis carrier with iron over load, gout, diabetic neuropathy without diabetes, Raynauds, degenerative disc disease, left side of body is weak and losing vision, severe headaches, calcification throughout my entire body, my teeth are rotting and falling out, cannot walk without assistance (I am only 54) circulatory issues, cannot eat so I drink nutrition. My pain is out of control, Dr's call me "medical anomaly" and I've been pushed and pulled all over CO with no help.

My in home therapist told me she has a patient with dysautonomia and saw a Dr. Schofield in Colorado. Sadly, I read about this disorder and I ALL OF THE SYMPTOMS. I tracked Dr Schofield down to her last know employer, ImmunoE but she has left.

Does ANYONE have ANY HELP OR HOPE FOR ME?! Do any people suffer with symptoms like this or know Dr Schofield? I'm at the end of rope, my 80 year old Mother takes care of me and I feel like a burden, hopeless and am slowly dying by infection after infection, organs starting to fail. Please re-direct me if I am in the wrong group. Thank you. Tara

[TaraRae]

Thanks!

As I said I have no clue where to go. I have all signs of an autoimmune issue, my INR is at 1.2, my red blood cells are over the top high and my endocrinologist (she just quit her practice) believes my parathyroid, as the preliminary tests were high, is causing my body to attack itself. My calcium levels are over the top hence, the bone spurs, breaking teeth, ect.. My Therapist deals with only terminally ill patients that are home bound. She suggested I may have an auto immune problem called dysautonomia. I found Dr. Schofield on this forum and am looking for her or ANY person that can point me in the direction of a Dr that deals with autoimmune issues. I did not list all of my medical problems as the list is very lengthy. I just know I am dying and no one can tell me why, why I can't tolerate food, clot blood, walk with assistance and I believe it is all connected to my autoimmune system. Thanks.

[Wittycjt in reply to TaraRae]

It would help if you could give us at least your “initial” diagnosis given so we have a place to start, we want to help you but we need more input from you. Where are you located, it sounds like you are in the States, possibly Colorado because you mention Dr S and she is there..give us a lead to help you, Cindy

[GinaD]

Where are you located! We may nor offer the perfect match , but some of us may be able to suggest a specialist in your area.

[TaraRae in reply to GinaD]

I am I'm Loveland Colorado. My primary diagnosis is idk? Chronic pancreatitis with pseudo cysts and calcification throughout. Also cirrohsis of liver. I have SO MANY ISSUES, I see SO MANY DR's! My primary thought, I was a Nurse and know my body, is I KNOW by lab results I have an immunity problem. My PCP agrees and is 100% supportive of finding "the real cause" and going down the path of dysautonomia. She cannot diagnose me with that but says "you are smarter than me and know your body better. It sounds like a good fit." My insurance is Colorado state Medcaid and I have an additional Kaiser insurance as well (they do not manage my Medicaid. It is separate)

Just reading that anyone could help me is hopeful. Thank you for replying!

[GinaD in reply to TaraRae]

I know this would be quite the time and monetary investment, but you might consider reaching out to various cutting edge medical entities: Mayo Clinic, NIH, Cleveland Clinic, etc. (I’m a fan of Cleveland Clinic and they have multiple locations around the world! ) The CC protocol involves all department docs -and if needed other department docs—meeting often to discuss every patient! Which means you get the best opinions out there. That may be the best way forward to understanding, context and treatment. Good luck!

[TaraRae in reply to GinaD]

Thank you Gina. I am flat broke and on SSI disability. I worked as a Denver Public School Nurse so we paid no $ I to Social Security. I ran through my "retirement fund" just trying to live in my state after they legalized marijuana recreationally here. Colorado is not affordable anylonger. Therefore, unless I find some rich relative I don't know about I really don't have the $ to do this. It's a sad state that our healthcare system is in at present. My Son has hemachromatosis, I am a carrier, and lives in Japan and gets great healthcare. My Mom and Daughter have hypothyroidism and are under medicated. I'm borderline. I thank you for your suggestions and time. I feel lucky as 2 years ago my Dr said that she thought I had about 2 years left on this Earth. Well, I'm still here! Just as clueless and ill. Again, thank you. Have a great week!

[GinaD in reply to TaraRae]

You might still try calling around; you exhibit such unique symptoms that some doctor interested in making the next great biochemical discovery might want to consult with you for free. And then, if you find a good medical match, there is always “Go Fund Me.”

[KayHimm]

I think it does make sense to see Dr. Schofield. She and her colleagues believe there is a link between autonomic dysfunction — sounds like you have that with your non-diabetic neuropathy — and APS. I hope she can help you.