So the day started out very strangely... I awoke to use the bathroom for the third time at around 4AM local time (I've been waking up between 5 and 6 AM at home lately so no big surprise). I figured I relieve myself and go lay down again for another hour or so only to find Lisa up on the sofa in a panic because she had water pouring from the ceiling in the basement.
Careful assessment of the situation lead me to believe that something was up with her central air. I got on line and learned all about evaporators and such and once we had some idea of what was likely occurring she began to calm down but we were up for the duration at that point.
So we hung out until about quarter to seven before heading over to Mayo for my "7:30 AM check in." While waiting the gal at the desk went over to talk with this lady. All HIPPA regs aside, we were able to eavesdrop and I'm hearing her tell the lady that she could come back on Thursday but they were all full today. Both Lisa and I were worried that I'd get the same spiel as an add on to the schedule. However, my situation proved to be very different than hers.
The gal explained to me that I needed to just sit tight and see if there were any cancellations and that there was a physician ready to see me this morning if there were no cancellations. I settled in to complete the information they needed and then began to read. I was actually called back within the hour.
The doctor was a very nice, clearly knowledgeable, older American doctor (truth be told, he could have been Canadian). Nothing against foreign trained doctors, but culturally it was comforting to be able to just be myself and be understood. He reviewed my medical records, listened to my history, asked some pointed questions and essentially came to a diagnosis there on the spot.
My one younger brother has been living with an auto immune disease for many years now. He has Ankylosing spondylitis. I'm not going to do any fancy links on this post so you will have to Google it yourself. This particular brother and I over the years have often been mistaken for twins despite a six year age difference so it comes as no surprise that we are having similar medical issues.
In any case, his illness tends to focus more on his spine. According the the doctor, he believes that I have a variant of spondylitis though in my case it is affecting the extremities and the connective tissue at the joints rather than the joints themselves. Apparently there is a genetic marker for the AS and we are testing to see if I have that. We are also testing once again for Rheumatoid and Lupus. Apparently most Lupus testing in the country right now is fairly worthless, so there is a small chance that my previous tests were false negatives. However, he thinks that with my brother's illness his first diagnosis is likely the correct one.
Those of you who have asked if this is good news or bad, with the presence of hand and foot pain, there were three likely major illnesses that I could have been stricken with - Lupus, Rheumatoid, or Scleroderma. None of these illnesses were a good match to my symptoms and none would have been very nice to have to deal with long term.
The present treatment plan he is prescribing will involve a rapid wean off the prednisone over the next six weeks and begin on weekly methotrexate tomorrow. The long term issues with methotrexate therapy have included liver issues. However, they have apparently learned that the real issue is fatty liver issues in conjunction with the med. Monitoring the fatty liver situation apparently is addressing the traditional complications. This is not a bad long term prognosis considering some of the other illnesses.
Lisa and I were living the premises by noon. After two plus years of this, I had an answer within three hours more or less. He indicated I could head home today. I explained that I was prepared to stay the week so he scheduled me in for a follow up on Thursday so we could go over the results of the lab work. I should be heading home to Michigan then early on Friday.
I am feeling a profound sense of relief. For over two years the doctors all wanted to lump this on the doorstep of the diabetes. For over two years I put up with chronic low grade pain and loss of function in my hands because the local rheumatologist agreed with this assessent. To his credit the Mayo physician explained that their response was not completely out of line given that men who present with a sudden high out of range glucose level can have significant pain issues with their hands similar to my symptoms. Where he breaks with them is that those symptoms do not respond to steroids and I had two episodes where the symptoms had completely resolved with steroids over the past two summers. For him that would have indicated something else was going on.
Thank you all for your prayers and concerns. I will still need them now as I wean off the prednisone, something that I fear will be a bit of an emotional roller coaster as my adrenal glands are dragged kicking and screaming back into play. I will be so glad to have my sugar levels get back under control so I can eat the occasional ice cream. If I am brave I will take and post a photo that shows just how puffed up I am right now so as it disperses I can see the difference.
Tomorrow will be another day of rest. Lisa and I have plans still to see the final Harry Potter movie, go have a good steak dinner, eat Indian at least one more time, and now just enjoy our visit. The A/C repair man will be here either later today or tomorrow but in the mean time she has a window unit in that is keeping the house cool. Peace and love to you all.
Careful assessment of the situation lead me to believe that something was up with her central air. I got on line and learned all about evaporators and such and once we had some idea of what was likely occurring she began to calm down but we were up for the duration at that point.
So we hung out until about quarter to seven before heading over to Mayo for my "7:30 AM check in." While waiting the gal at the desk went over to talk with this lady. All HIPPA regs aside, we were able to eavesdrop and I'm hearing her tell the lady that she could come back on Thursday but they were all full today. Both Lisa and I were worried that I'd get the same spiel as an add on to the schedule. However, my situation proved to be very different than hers.
The gal explained to me that I needed to just sit tight and see if there were any cancellations and that there was a physician ready to see me this morning if there were no cancellations. I settled in to complete the information they needed and then began to read. I was actually called back within the hour.
The doctor was a very nice, clearly knowledgeable, older American doctor (truth be told, he could have been Canadian). Nothing against foreign trained doctors, but culturally it was comforting to be able to just be myself and be understood. He reviewed my medical records, listened to my history, asked some pointed questions and essentially came to a diagnosis there on the spot.
My one younger brother has been living with an auto immune disease for many years now. He has Ankylosing spondylitis. I'm not going to do any fancy links on this post so you will have to Google it yourself. This particular brother and I over the years have often been mistaken for twins despite a six year age difference so it comes as no surprise that we are having similar medical issues.
In any case, his illness tends to focus more on his spine. According the the doctor, he believes that I have a variant of spondylitis though in my case it is affecting the extremities and the connective tissue at the joints rather than the joints themselves. Apparently there is a genetic marker for the AS and we are testing to see if I have that. We are also testing once again for Rheumatoid and Lupus. Apparently most Lupus testing in the country right now is fairly worthless, so there is a small chance that my previous tests were false negatives. However, he thinks that with my brother's illness his first diagnosis is likely the correct one.
Those of you who have asked if this is good news or bad, with the presence of hand and foot pain, there were three likely major illnesses that I could have been stricken with - Lupus, Rheumatoid, or Scleroderma. None of these illnesses were a good match to my symptoms and none would have been very nice to have to deal with long term.
The present treatment plan he is prescribing will involve a rapid wean off the prednisone over the next six weeks and begin on weekly methotrexate tomorrow. The long term issues with methotrexate therapy have included liver issues. However, they have apparently learned that the real issue is fatty liver issues in conjunction with the med. Monitoring the fatty liver situation apparently is addressing the traditional complications. This is not a bad long term prognosis considering some of the other illnesses.
Lisa and I were living the premises by noon. After two plus years of this, I had an answer within three hours more or less. He indicated I could head home today. I explained that I was prepared to stay the week so he scheduled me in for a follow up on Thursday so we could go over the results of the lab work. I should be heading home to Michigan then early on Friday.
I am feeling a profound sense of relief. For over two years the doctors all wanted to lump this on the doorstep of the diabetes. For over two years I put up with chronic low grade pain and loss of function in my hands because the local rheumatologist agreed with this assessent. To his credit the Mayo physician explained that their response was not completely out of line given that men who present with a sudden high out of range glucose level can have significant pain issues with their hands similar to my symptoms. Where he breaks with them is that those symptoms do not respond to steroids and I had two episodes where the symptoms had completely resolved with steroids over the past two summers. For him that would have indicated something else was going on.
Thank you all for your prayers and concerns. I will still need them now as I wean off the prednisone, something that I fear will be a bit of an emotional roller coaster as my adrenal glands are dragged kicking and screaming back into play. I will be so glad to have my sugar levels get back under control so I can eat the occasional ice cream. If I am brave I will take and post a photo that shows just how puffed up I am right now so as it disperses I can see the difference.
Tomorrow will be another day of rest. Lisa and I have plans still to see the final Harry Potter movie, go have a good steak dinner, eat Indian at least one more time, and now just enjoy our visit. The A/C repair man will be here either later today or tomorrow but in the mean time she has a window unit in that is keeping the house cool. Peace and love to you all.
1 comment:
I have supported the Spondialosis Association of America since L8N was diagnosed. They are always looking for siblings for research projects. Maybe you two would qualify.
I'm so happy you have an answer.
Post a Comment