Sunday, June 22, 2014

Massively behind! Update on the first half of 2014

Well at this point I can't remember exactly what happened or was discussed at the appointments but will do point from the basics. So far I have had the following appointments:

January 23rd - Family Doctor Appointment 

This appointments was to go over the CT scans I had done the end of December. Strangely my herniated / bulged discs and bone spur did not show up on the scans. My GP figures the majority of my neck issues are down to instability in the neck. Probably the quickest and easiest 'diagnosis' of CCI ever known! He also reviewed my CT scans and noted the 'nodule' on my thyroid and told him to remind me in six months. 

March 6th - Internist Appointment 

Not much to this appointment, wasn't made for anything specific just a check in.  I asked whether tethered cord or a lower spinal issue could be the answer to my sweating issues. She wasn't sure but wrote up the MRI request easily.  We also discussed a new medication that is out there that is a beta blocker and an alpha antagonist. Even though it's for high blood pressure (which I do NOT have) she thinks it could really help that balance between lower pulse enough without lowering BP too much. I did ask her about getting testing to see what vitamins and minerals  I am deficient in and if my body is absorbing enough. She told me to see my GP for that.

March 20st - MRI of Upper Spine

March 21st - MRI of Lower Spine

April 10th - Bloodwork

May 5th - Eye Test Recheck 

I had had a full exam of my eyes in November but certain numbers were to high so she was worried about glaucoma (my dad has it) so wanted me to come back in 6 months to have the field of vision test reordered.  Thankfully it was a different tech who didn't move the chin cup without telling me!mshe then had me wait and my doctor called me in to her office for a quick look at something and I ended up getting another full eye exam done! I was at the office for almost an hour! Good news is she thinks my pressures are okay, just something to keep and eye on. Bad news BOTH my eyes had gotten weaker and both showed a 0.5 difference! So I need to get new glasses again (thankfully they will be covered as it's such a drastic difference in a short time from)

May 6th - Family Doctor Appointment 

Not much occurred at this appointment. As almost six months had gone by my doctor ordered the thyroid ultrasound suggested in December. I also asked him to order me a new DEXA (bone density) scan as I hadn't been checked since I started taking medication for the osteoporosis.  We discussed the fact that my headaches are coming back again and he asked me to look into Botox for migraines.  

May 16th - Thyroid Ultrasound

Got in pretty quickly for the scan so I was happy. Got there and prepped and the tech started the scan. She did a LOT of clicking and measuring. One side of my neck took twice as long as the other side. What really scared me though was at the end she told me to stay as I was and she went over and pulled up my CT scan and looked at them.  Looked is too weak of a word, she studied them, spent at least five minutes viewing the scan then abruptly said she was done. Still haven't gotten the report as I had to wait for my DEXA scan before doing a follow up appointment. Interesting thing happened at the hospital. We believe there was a small fire somewhere. They locked all the doors, nurses were in every entrance way, the stores closed down and the alarms just kept going. It was really strange!

June 11th - DEXA scan 

It took a long time but I finally got in (longest wait for a test that I have ever had!). Of course things can't be easy and the hospitals computer system decided to die so everything was done by hand! The admission guy didn't even know what anDEXA scan was! Finally got back to the next waiting room and filled out my forms.  As the tech was reviewing them with me she asked if I had a list of my medications she could copy (I wrote them out by hand) and I said no, then she started reading all my information and looked right at me and said "You need to get a medic alert bracelet now".  She even 'thanked' me because I was obviously proactive in my own health care and that most people couldn't even tell you what meds they are taking. I taught her all about EDS and how my premature birth was blamed when it was all EDS she asked how early I was and when I told her 29 weeks and 2.5lbs she blurts out "Holy Shit!) and that was  a long time ago when most didn't survive. She was very interested in EDS so I educated her and answered all her questions. She also commented how 'calm' I seemed about my crappy health so I gave her I can have EDS and be bitter or I can have EDS and find the silver linings, either way I still have EDS. It was a very good appointment and hopefully if a patient comes in and shows signs of hypermobility she will remember me :)

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