Autoimmune diagnosing problem

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

Brie87144, I hope you are still on line, and curious. I have been thinking about your issues, and I have something to add. Please visit http://www.aarda.org for a list of autoimmune diseases. Why? I think I see in your list of tests no mention of kidney failure or issues. I say this because my kidneys do not wash out all the broken or mis-folded proteins from my plasma and serum. Then those proteins die in a couple hours and deposit themselves in any tissues, including nerves, muscles, bones, etc. They get in between cells in nerves and cause broken links in control nerves and sensory nerves. This cause paralysis, de-sensitization, shorted signals going from the brain to the tissues such as heart, stomach, muscles, etc. My simple suggestion is to have your doctor do a SERUM Free Light Chain@ assay, and send it to ARUP, Stanford, Mayo, Quant, Mass Gen, Sloan-Kettering, etc. Also do a 24-hour urine collection/protein search. If either of these proves positive, move up the scale on the tests. One of these top lobs can guide your process. I only know this much because I am going through the dX process with amyloidosis now, and am finally getting close to the truth. The diagnosis timeline in this area can last up to a half century. I started asking for help in about 1980. The disease is just now getting to the stage where dx is possible, although it will actually be more of a prognosis than a dx. So keep pushing your doctors. Educate yourself and your docs.

I know well your frustration. I have the same issues and after over 40 doctors with mountains of blood work, which included Barrow's Neurological Institute, no results. I had to retire because i couldnt function on my own. I filed and received disability from SS. I finally went to a rheumatologist at Mayo Scottsdale. He sent me to a neurologist for tests that were conclusive to having severe vaculitis and RA. I was immediately put on high doses of prednisone and received infusions of Rutuximab. I responded immediately after two infusions. After 6 months the symptoms returned and I had one additional infusion. That was 4 yrs ago and I am on Cellcept to control the vasculitis which was brought on by Wegeners Gramulamatosis. I am taking Gabapentin and Fentynal patches for the severe pain. My life changed in one day from a healthy 50 yr old that never got sick or needed to go to the doctor to a cripple. I moved into an assisted living facility for over 2 yrs and required a motorized chair to get around. I gained nearly 100 pounds and couldn't literally get out of a chair. I went through a yr of physical therapy 3 times a week. I am now out of the facility, have no need for the chair, and am back to some kind of normalcy. My wife is an angel sent to me by God. She was my support through this and is still by my side. I just now began to drive but just short distances. There is hope but i never gave up. After tens of thousands of dollars (even with insurance) i am much better and I'm seeing the same doctor every 3 months including blood work. He makes sure all the markers for this stay in line and provides support. I wish you success and am so thankful for Mayo Clinic Connect. God speed.