Awaiting Medical Tests and Results
I had an appointment with my doctor again this morning. I had planned to go to this appointment alone (Sheila and I usually attend appointments together but this appointment seemed like it would be uneventful... ie, no life threatening decisions to be made or discussed... so I was going it alone today) but my car is frozen in the mud so Sheila had to leave work to drive me there. Other than giving up some blood, the appointment was rather painless.
Sheila and I saw the same doctor last week for Sheila's lingering cold. While we were there for Sheila, my doctor said she wanted to see me for a full exam and to adjust my medications. That appointment was this morning. This appointment was not a moment too soon since my health has been rather miserable lately.
I've been having significantly worsened breathing issues since June of 2015... which is a long time and something which should have sent me to the doctor long ago. That was a priority today because it seems to be worsening lately. Also a priority is overwhelming fatigue, cognitive issues, worsened spinal pain, and significantly worsened bone pain. Appointments like these are always a good time to adjust my cocktail of medications so we discussed that as well and, hopefully, we made some effective changes. Time will tell....
In the end, we came to the conclusion that there is no need at this point for any further testing related to my primary illness, Systemic Mastocytosis. No matter what we find related to that, it would not change my current treatment since there is no cure for this illness. These tests can get a bit invasive and that only worsens my health anyway. So, for now, no testing for Systemic Mastocytosis. That being said, we do need to keep an eye on the development of any life threatening secondary illnesses which often accompany Systemic Mastocytosis.
My doctor did feel it was important to do some bloodwork to rule out any of the common secondary illnesses such as cancers, lymphomas and leukemias. She is also checking my thyroid, kidneys and liver (mostly known areas of concern which take a beating from my mast cells due to this illness, and areas in which I have a history of problems).
I need to return to the doctor's office next week for some imaging of my lungs as well since my breathing is one of my biggest complaints. Between my complaints and my O2 count being low while at this appointment today (and today has been a relatively 'good' day), she wants to take a look at my lungs to ensure nothing is pressing on the lungs or to spot any other potential problems which might be causing my worsened breathing issues.
Now, I'm tired and need to try to get some sleep. The past few weeks have been brutal, healthwise, and I am in desperate need of some restful sleep. My spinal pain has been so bad lately that I figured I am being awoken approximately three dozen times each night due to pain... then needing to change positions which is also extremely painful to accomplish... then awaking again due to pain... and this ten minute cycle continues all night long.
So... I'm exhausted... more exhausted than usual... one more medical appointment is behind me though.
UPDATE: After arriving back home from my appointment this morning, I passed out, exhausted, for four hours. During that long nap, my doctor called twice and left a message for me. She stated that my bloodwork looked good... nothing to worry about... which means the problems I'm having are more than likely related to my Systemic Mastocytosis. So... the good news is no secondary cancer/leukemia/lymphoma/etc. The bad news is this looks like the worsening overall health is due to Systemic Mastocytosis and there is little which can be done about that. I still need to head back to the doctor on Monday for imaging of my lungs...
UPDATE - 25 Feb 2016: The radiologist's report came back on my lungs... everything appears normal. So... another good news/bad news sort of thing. The good news, as Sheila said about this news, "At least there is nothing serious lurking". The bad news is the same as the bad news about the bloodwork showing nothing unusual... the theory is that my illness, Systemic Mastocytosis, is causing more frequent problems with my lungs than in the past. Which... like some other symptoms such as idiopathic anaphylaxis, instantaneous gastro-intestinal problems, dizziness, weakness, bone pain, joint pain... there is little that can be done. All we can do is rest and throw extra medications (medications I am already taking) at the symptoms and hope for relief as soon as possible.
Sheila and I saw the same doctor last week for Sheila's lingering cold. While we were there for Sheila, my doctor said she wanted to see me for a full exam and to adjust my medications. That appointment was this morning. This appointment was not a moment too soon since my health has been rather miserable lately.
In the end, we came to the conclusion that there is no need at this point for any further testing related to my primary illness, Systemic Mastocytosis. No matter what we find related to that, it would not change my current treatment since there is no cure for this illness. These tests can get a bit invasive and that only worsens my health anyway. So, for now, no testing for Systemic Mastocytosis. That being said, we do need to keep an eye on the development of any life threatening secondary illnesses which often accompany Systemic Mastocytosis.
My doctor did feel it was important to do some bloodwork to rule out any of the common secondary illnesses such as cancers, lymphomas and leukemias. She is also checking my thyroid, kidneys and liver (mostly known areas of concern which take a beating from my mast cells due to this illness, and areas in which I have a history of problems).
I need to return to the doctor's office next week for some imaging of my lungs as well since my breathing is one of my biggest complaints. Between my complaints and my O2 count being low while at this appointment today (and today has been a relatively 'good' day), she wants to take a look at my lungs to ensure nothing is pressing on the lungs or to spot any other potential problems which might be causing my worsened breathing issues.
Now, I'm tired and need to try to get some sleep. The past few weeks have been brutal, healthwise, and I am in desperate need of some restful sleep. My spinal pain has been so bad lately that I figured I am being awoken approximately three dozen times each night due to pain... then needing to change positions which is also extremely painful to accomplish... then awaking again due to pain... and this ten minute cycle continues all night long.
So... I'm exhausted... more exhausted than usual... one more medical appointment is behind me though.
UPDATE: After arriving back home from my appointment this morning, I passed out, exhausted, for four hours. During that long nap, my doctor called twice and left a message for me. She stated that my bloodwork looked good... nothing to worry about... which means the problems I'm having are more than likely related to my Systemic Mastocytosis. So... the good news is no secondary cancer/leukemia/lymphoma/etc. The bad news is this looks like the worsening overall health is due to Systemic Mastocytosis and there is little which can be done about that. I still need to head back to the doctor on Monday for imaging of my lungs...
UPDATE - 25 Feb 2016: The radiologist's report came back on my lungs... everything appears normal. So... another good news/bad news sort of thing. The good news, as Sheila said about this news, "At least there is nothing serious lurking". The bad news is the same as the bad news about the bloodwork showing nothing unusual... the theory is that my illness, Systemic Mastocytosis, is causing more frequent problems with my lungs than in the past. Which... like some other symptoms such as idiopathic anaphylaxis, instantaneous gastro-intestinal problems, dizziness, weakness, bone pain, joint pain... there is little that can be done. All we can do is rest and throw extra medications (medications I am already taking) at the symptoms and hope for relief as soon as possible.
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