So when I left the Mayo Clinic two weeks ago, they had some “assignments” for me and doctors to follow up with here.
This past Wednesday I had kind of a big appointment with my endocrinologist. I say “big appointment” as many of the changes that were suggested would be made by this doctor. We went into the appointment ready to explain the cause, reasoning, and not take no for an answer! Well, she was very willing to try these changes, made a suggestion as to the best way to go about these changes/additions, and we started the process. One thing we want to do is restart HGH (human growth hormone). The doctor was a little more hesitant about that, but agreed. However, because of insurance, it will be a good month or two before I start as prior approval is needed. So I am very anxious to see where all of these smaller changes lead us.
I was supposed to have an MRI today, to get a base line where things are at before we begin new medicine. However, we got to the doctor (after getting a confirmation call yesterday) only to find out that my insurance has not approved it yet. So prayers that approval will come quickly so we can start this!!
The psychiatrist I saw recommended an anti anxiety medicine; saying how my body could be reacting to all these things going on out of nervousness and uncertainty. So he suggested an anti anxiety medicine that may help my body relax on its own.
I have a s keep study scheduled the end of the month, July 23. I had tried to get that when in Rochester, was on a wait list checking several times a day. Well it is a God thing I didn’t get in. The sleep doctor here was saying how it is important to be tested in the area you typically sleep; with the same altitude, climate, etc. That made complete sense and I was so thankful it hadn’t worked out.
So we will see what happens after these tests...i’ll Keep you posted and thank you for continued thoughts and prayers!! This roller coaster isn’t over yet...
Friday, July 12, 2019
Monday, July 1, 2019
Catch up...what now?
So first off, I don't know if anyone is checking this any more as I have not posted in so long...so in a strange, weird way, if someone reads this if you could either leave a comment, send an email, text me...some way to let me know that it is being read, that would be appreciated.
So to back up and fill you in....I left the Mayo clinic with some guidelines and things to go by as far as things that could help my sleep, headaches, and in turn the episodes. I met with my sleep doctor and currently have a sleep test done in the lab scheduled for the end of July. However, my neurologist that I also followed up with, suggested (before even knowing I was getting a sleep test done) I be tested for neuropathy. This is done by a sleep test and then a series of additional testing the next day. When my doctor was talking about neuropathy, I felt as if I could relate to some of what she was saying, which makes me hope it works to have that tested as well!! So that is all still a little up in the air, as I am waiting to hear from the doctor.
I also met with my neurologist/headache doctor. I told her about the ideas from Mayo (restarting botox and doing it a full year, rather than just once or twice) as well as a newer nerve block. The day I met with the headache doctor I expected nothing would be done then as we would have to get prior authorization through insurance. However, we did both of them that day. Since then my headaches have been a little better, praise the Lord, and I am believing that with more injections (as awful as they are), it will improve all the more.
I have an appointment with my endocrinologist next week, and with the changes she will make and these other things, believing for positive things!!!!
So to back up and fill you in....I left the Mayo clinic with some guidelines and things to go by as far as things that could help my sleep, headaches, and in turn the episodes. I met with my sleep doctor and currently have a sleep test done in the lab scheduled for the end of July. However, my neurologist that I also followed up with, suggested (before even knowing I was getting a sleep test done) I be tested for neuropathy. This is done by a sleep test and then a series of additional testing the next day. When my doctor was talking about neuropathy, I felt as if I could relate to some of what she was saying, which makes me hope it works to have that tested as well!! So that is all still a little up in the air, as I am waiting to hear from the doctor.
I also met with my neurologist/headache doctor. I told her about the ideas from Mayo (restarting botox and doing it a full year, rather than just once or twice) as well as a newer nerve block. The day I met with the headache doctor I expected nothing would be done then as we would have to get prior authorization through insurance. However, we did both of them that day. Since then my headaches have been a little better, praise the Lord, and I am believing that with more injections (as awful as they are), it will improve all the more.
I have an appointment with my endocrinologist next week, and with the changes she will make and these other things, believing for positive things!!!!
Saturday, June 22, 2019
Wrap up and thanks
S to catch us up with day 4 and 5...
Thursday we had a consultation with a neurologist and endocrinologist, as those are two areas that were of concern with these reoccuring episodes. After talking with us, doing more tests, and really thinking about the situation, they both ruled themselves, or their area, out as being a problem or cause of the episodes. While at first this was tough to handle and deal with, they did have some good ideas and thoughts to pursue...between changing some doses of meds, adding medicines, sleep study, and other things such as that we do have a plan forward, which I feel goood and confident about.
Friday I met with the general internist again. She basically summarized all the suggestions that the multiple doctors i saw recommended. It was a good wrap up and I feel pretty good about were I am heading...
Now the prayer is that as i see 3 or 4 of my doctors here that they would be able to impliment the changes and then that the Lordse changes to bring healing to my body.
Thank you all for support and prayers! Priceless...
Thursday we had a consultation with a neurologist and endocrinologist, as those are two areas that were of concern with these reoccuring episodes. After talking with us, doing more tests, and really thinking about the situation, they both ruled themselves, or their area, out as being a problem or cause of the episodes. While at first this was tough to handle and deal with, they did have some good ideas and thoughts to pursue...between changing some doses of meds, adding medicines, sleep study, and other things such as that we do have a plan forward, which I feel goood and confident about.
Friday I met with the general internist again. She basically summarized all the suggestions that the multiple doctors i saw recommended. It was a good wrap up and I feel pretty good about were I am heading...
Now the prayer is that as i see 3 or 4 of my doctors here that they would be able to impliment the changes and then that the Lordse changes to bring healing to my body.
Thank you all for support and prayers! Priceless...
Friday, June 21, 2019
Day 3
Wednesday I had 2 consultations with a cardiologist and neurologist. Based off the tests I had done pertaining to these areas, everything appears fine...although that is good news that ”everything is fine”, it isn’t as I am so desperate for answers...
There were a couple tests they wanted to try after I expressed my need for answers. I did a 24 hour urine sample (sub optimal test for mom and I...) and then an exam to test my blood pressure in different situations and instances. I’ll do this test tomorrow morning...
There were a couple tests they wanted to try after I expressed my need for answers. I did a 24 hour urine sample (sub optimal test for mom and I...) and then an exam to test my blood pressure in different situations and instances. I’ll do this test tomorrow morning...
Tuesday, June 18, 2019
Day 2
Whew! Today was a full, jam packed day. Days like this is when I am especially greatful for my parents, and in this case, my mom as she is here with me and helping me around the huge Mayo complex and in each appointment...priceless!
The day started with a psycologist evaluation.Mom and I both went in a little skeptical...however, he explained how these episodes could be a result of everything my body has been through, and my bodys way of responding to it; in a anxious type of way. That made sense and the more he talked through things, the more it made sense. He suggested a couple different medicines, which we will talk with my neuriologist about. At the end of the appointment, he commented on how I inspired him and how amazing I was...pretty amazing as he had just met me and was with me maybe an hour.
The second appointment was a pulminology appointment. I went in, sat in this chair connected to a tube and massive machine, and this lady started to coach me through different breathing exercises. I had to breathe in, breathe out, and continue to “breathe out” until I was coughing and there was LITERALLY nothing left. I did several different tests, panting, short breaths, long breaths, etc. before we were done and outta’ there!
I was able to disconnect from the heart monitor...praise the Lord, I did have a couple episodes with it on. Nothing super major or intense, but something. So I will be anxious to see what comes of that.
I had a cardio echogram today as well. I have had one of these before as well, so nothing earth shattering. The lady who did it was super nice, getting me warm blankets as I was cold. So we will see what, if anything, conmes of that.
Tomorrow is another full day, buut believing for appointments that will lead to results!
The day started with a psycologist evaluation.Mom and I both went in a little skeptical...however, he explained how these episodes could be a result of everything my body has been through, and my bodys way of responding to it; in a anxious type of way. That made sense and the more he talked through things, the more it made sense. He suggested a couple different medicines, which we will talk with my neuriologist about. At the end of the appointment, he commented on how I inspired him and how amazing I was...pretty amazing as he had just met me and was with me maybe an hour.
The second appointment was a pulminology appointment. I went in, sat in this chair connected to a tube and massive machine, and this lady started to coach me through different breathing exercises. I had to breathe in, breathe out, and continue to “breathe out” until I was coughing and there was LITERALLY nothing left. I did several different tests, panting, short breaths, long breaths, etc. before we were done and outta’ there!
I was able to disconnect from the heart monitor...praise the Lord, I did have a couple episodes with it on. Nothing super major or intense, but something. So I will be anxious to see what comes of that.
I had a cardio echogram today as well. I have had one of these before as well, so nothing earth shattering. The lady who did it was super nice, getting me warm blankets as I was cold. So we will see what, if anything, conmes of that.
Tomorrow is another full day, buut believing for appointments that will lead to results!
Monday, June 17, 2019
Day 1 cont...
A couple more updates/prayer requests from the day...
I had MANY appointments today; from chest x-rays, to Echocardiograms, to heart monitor hook up, to sleep study...it was wearing for both mom and I, but praying and believing it is not all in vein. We have several more appointments scheduled for tomorrow and are hoping to get a couple appointments (we will check first thing in the morning) that they could not schedule us for.
Prayer requests are first that we would get the appointments we need...this week! Then the second prayer request is that I was hooked up to a heart monitor for 24 hours, so as crazy as it sounds, we are praying I have a big episode during the time that I am hooked up to this thing...
We followed up with financial aid and found out that no assistance is given unless surgery is required, heaven for bid! However, we had to put another couple thousand down...so continuing to pray and believe that it is not all for not!
More tomorrow when more is known. Thank you so much for prayers!!!
I had MANY appointments today; from chest x-rays, to Echocardiograms, to heart monitor hook up, to sleep study...it was wearing for both mom and I, but praying and believing it is not all in vein. We have several more appointments scheduled for tomorrow and are hoping to get a couple appointments (we will check first thing in the morning) that they could not schedule us for.
Prayer requests are first that we would get the appointments we need...this week! Then the second prayer request is that I was hooked up to a heart monitor for 24 hours, so as crazy as it sounds, we are praying I have a big episode during the time that I am hooked up to this thing...
We followed up with financial aid and found out that no assistance is given unless surgery is required, heaven for bid! However, we had to put another couple thousand down...so continuing to pray and believe that it is not all for not!
More tomorrow when more is known. Thank you so much for prayers!!!
Day 1
Today was the initial intake appointment with the internalist (general doctor). I believe it was a God ordained situation when we arrive in the back room to find out our doctor we were supposed to see, was not there. The new doctor assigned to us came in, we gave a brief background and reason as to why we are here...while she still wants to do tests we have already done, she has some thoughts that are intriguing. For example, my poor sleeping patterns could be contributing more than thought...
So we have many appointments scheduled the next few days, one of which is a take home )or should i say take to the hotel?) sleep test. So we will see what comes of this, but continued thoughts and prayers appreciated!!
Post more when more is known...
So we have many appointments scheduled the next few days, one of which is a take home )or should i say take to the hotel?) sleep test. So we will see what comes of this, but continued thoughts and prayers appreciated!!
Post more when more is known...
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