Thursday, November 7, 2013

Long overdue!!

Wow! It's been so long since I updated! Seems like so much has happened and gone on yet nothing has happened or gone on. Do you know what I mean? I have had three different doctor's appointments (and a few small doctor's office visits). I was going to include all of them in this one post but then it would be way too long so I will just link up the entries and post the appointments on the day that they happened.  So here they are:

August 22nd - Appointment with my Internist / GI / Cardio

October 28th - Appointment with my GP

November 4th - Appointment with Optometrist

I promise I will update sooner rather than later and do a general update not tied to doctor appointments!

Monday, November 4, 2013

November 4th - Optomitrist Appointment

It has been three years since my last appointment and getting glasses and I knew that I was way overdue for testing.  Even with my glasses on I have trouble seeing things (mainly the guide on the TV) even though my close vision and driving seemed fine.  What a hassle it was though!  With ODSP I am covered for eye exams when I bring my medical card, however I had already handed it in to my pharmacist so the 'eye office' had to call the pharmacy and have them send a faxed copy of it for them.  Thankfully my pharmacy really knows me well so it was sent almost instantly.

I did the exam and gave the doctor a brief recap of EDS and eyes (she was the only doctor who knew what EDS was before seeing me!).  She said that she really didn't like my pressure readings (one was 23.75 the other 24) and wanted to get me some other tests diagnosed and asked if EDS had any bearings on glaucoma.  I told her that I had read it could be related and would look into it and then mentioned that my dad has glaucoma.  When I said that she called the front desk and had them get other tests set up for me to do that day :(

We did all the tests and both eyes had deteriorated.  She said it was kind of odd as generally she only sees that happen in the teenage years and by my age usually the readings don't change that drastically.  Both eyes need the prescriptions to increase a full level (so four quarter levels!).  She then sounded shocked that she could see everything in my eyes and didn't even need to dilate my pupils.  That that was also something that generally only happened in people much younger than me.  She said I had very large pupils and that is why I have so many problems with sunlight.  She told me to get some really good sun glasses, I might have to find out how I can go about getting prescription sunglasses if I also need everyday glasses as well.  I don't know what is covered or what I can get covered.

Good news - My eyes are pretty much the ONLY part of my body that is not being affected by my EDS!  Yay! I have no signs of any of the things that can go wrong which is great to hear!!

I then had to go do a field of vision test which was horrible!  The eye tech would have my chin in the cup thing and she would adjust it without warning! My neck hasn't been the same since! (Seriously it was / is quite bad :( ).  Apparently I tested "borderline" on that test as well so I have to go back in 6 months.

Then at the desk getting everything figured out they tell me that the test I had just done was going to cost me $40 and ODSP didn't cover it.  I asked if my form for OHIP coverage would cover it and she said yes but they had no such form!  I told them I had it filled in and brought it in a few years ago (they last 5 years) and they said that the had no way to do it.  She asked who did it and said she would call the office, I tell her it was years ago and they had changed filing (paper to electronic) and not sure if it would still be there - their response? "If it was filled out then it has to be in your chart" I didn't reply asking why they didn't keep the old one in my chart.  So they called the doctor and he said he would do the paper work and send it in.

Since Then - I got a call the next day from the 'eye office' and they told me that my GP had sent the form so it was covered and oh yeah, we found your old form, then hastily told me it was expired (not so sure of that myself!).  So I go again in 6 months to see if I have glaucoma :(

Monday, October 28, 2013

October 28th - GP Appointment

This was a very very bad appointment.  About a week and a half before this appointment I had to go to the office and get a few (10) pills of my breakthrough medication.  I did this as I wanted to get my doctor to figure out a new breakthrough medication to help with the pain so I didn't want to get too many of them.

So I got to my appointment with a few things I wanted to go over, it was an appointment for a thyroid check but for me it was more to get him to change things up for my pain levels.  I get in and he was happy about my thyroid levels, that they have stabilized and that the dose I am on seems to be the dose that I will be staying on.  He asked if I notice and differences and I told him that yes it was helping.  I needed a few medications refilled so he did those and then we started in on the pain issue.

I told him that I needed to change my medications and so he asked what I wanted for long term and I told him what we normally switch to and he was fine writing that one up.  I asked him if we could try the same total daily dose (90mg) and instead of taking it twice a day (45mg) could I take it every 8 hours (30mg) as the long acting meds don't seem to be lasting the full 12 hours.  He did not want to do this because he felt that just changing the medication was enough of a change to my body and that we could revisit that idea when I had my next appointment (I see him every 3 months unless something else pops up).  I don't agree but I can see his logic so I will just wait the 3 months and see how it goes.

He then notices one of the medications that I am on and wondered why I was on such a low dose!  I told him I had been higher with my old doctor but that the dose I was on was enough to stop the nerve pain in my shoulder.  My GP then said he wanted to triple the dose and see if it helped my overall pain levels.  I told him I was hesitant about it as quite a few doctor's had prescribed it years ago and it never touched my overall pain and that I really didn't want to increase it.  So he told me that he was going to write that I could increase it to triple my dose but that it was up to me (Such a weird statement from him).  I really don't want to increase it as this is the medication that caused me to gain almost 15lbs when I started taking it!!  I'm trying to lose weight not gain it!  Also made me mad because the last time we discussed my headaches and a new medication I wanted to try he said I couldn't strictly because of this medication.  I was honestly thinking about discontinuing it and instead he wants me to triple it!

Then I say that I need something new for breakthrough.  He asks what I used to use and when I told him he just said 'I am not prescribing' and how it isn't used in practice anymore and how 'dirty' it is.  So I asked him what I could use instead.  He then proceeds to tell me that I shouldn't need anything for breakthrough with the other medication changes!  I was so shocked that I couldn't speak then started almost crying. I told him that wouldn't work, that if I injured myself I needed to have something extra (I had just dislocated my wrist the night before and it was wrapped up so I used that as an example).  He finally said well I don't know what to give you so I want you to find what would work best then I will write it for you (WHAT!?!?!).  I then asked if I could get some of the old stuff as even though it didn't work well it at least did help more than just plain advil (which I can't take two days in a row or I dislocate like crazy).  He then hands me a sheet and wrote it out for 40 pills!  I questioned that and he tells me that the last prescription he had written was only for 10 and this was quadruple the amount.  I said that the 10 pills where only to cover a 10 day time period as I had wanted him to change it.  He fixed it up then told me that all he wants is to get my pain controlled (funny way of showing it).  I left the appointment without making my follow-up appointment because I was so upset and mad (and crying because of how mad and upset I was).

I went home and got mad.  I had asked my mom to go to the appointment with me as he tends to take me more seriously when she is with me but she didn't want to go so I didn't push it.  I came home and I think she felt bad that she didn't go and said we would go back.  Because that would look so good and help me with credibility.  I just told her I would figure it out.

Since Then:  I love my pharmacist!  Not only did she completely call him out she worked so hard for me.  She asked me why he wouldn't just give me the old med and I told her why and she just looked at me for a minute and said that the fact that no one used it anymore was a surprise to her as she filled it quite often and had no idea as to why he would call it a 'dirty' drug to someone who used it responsibly!  I told her how he wanted me to find a new medication to use and she remarks "So he will write what you want - as long as he 'likes' it?" I had to laugh at that.  She was on the same wavelength as I was and we both agreed what was the best thing to do.  It was late in the day when I talked to her so the doctor wasn't there so she said she would write a note for the pharmacist in the next day so when the office called they would know what was going on.  I called the doctor's office the next day and after back and forth calling between me, the office and the pharmacy we finally got it figured out and called in.  Can you believe that the doctor's office wanted to even know what dose I should get? Like they couldn't figure it out themselves?!?  When I picked it up that night I noticed the note that the other pharmacist wrote and it had on it "Doctor doesn't "like" -(other drug)- doesn't know what to give" then something along the line that me and the pharmacist brainstormed and came up with the answer.

It was a very easy answer and I really really have to question why the doctor couldn't figure it out.  The one set of meds was "Drug X Contin" for long term and "Drug X" for breakthrough.  So now that I was on "Drug Z Contin" didn't it make sense for me to just get "Drug Z" for breakthrough?

The new breakthrough is helping, was even able to get a way with a half dose a few times before the pain got too bad and it seems to last 2-3 hours (supposed to last 4-6).  Unfortunately the long term medication hasn't seemed to really help me.  However, I dislocated my shoulder the night I started it as well as made adjustments to my bed (I have a water bed and we had just added some more water and 'burped' it the same day).

Thursday, August 22, 2013

Aug 22nd - Internist/GI/Cardio Appointment

Internist Appointment
August 22nd - I saw my internist/cardio/GI and was slightly worried about this because I have been asking her for years if my thyroid was off but she kept testing it and telling me it was fine. Well after the major change in numbers, I am on thyroid medication. I went in and we discussed my beta blocker and she agreed to switch me to a new one and set a dose but told me I could increase it from 1/2 pill to a full pill if I needed to do so as she knows I have my own BP machine at home and do keep very good track of it myself and know when something needs to be increased or decreased. We then got on to the thyroid and she said she would have liked a repeat test before putting me on medication then asked if it was helping and I told her that it most definitely was and she just sat back for a minute and said that 'with me' she probably would have started the medication instantly as well. She then said that with me, we have already learned that even a small change in testing values can cause a very large change in my health. She asked about the anti-biotics and my stomach and I told her that it seems to still be working but I do have to occasionally (every 2-3 months) stop taking the medication for a week, then start it again to avoid tolerance. She was more than happy with this and told me to just keep doing what I was doing and let her know if changes needed to be named.

Since Then - I did have to change the beta blocker and after a few days of mis-communication with the office we got the medication dosage changed. I went off the anti-biotics for a few days as tolerance was starting to happen. However, I had a lot of stomach issues those few days. I was bloated, gained 5lbs and felt so 'full' that I barely ate anything and was on the way to getting sick. I quickly started taking the medication again and I instantly lost those 5lbs and the problems stopped. So I might have to ask the doctor if there is another medication in the same family that I could switch to instead of doing an on-off pattern with the one I have now


Tuesday, July 30, 2013

July 29th - Doctor's appointment for thyroid levels

First off, last week I had to go and get blood work done to see what my thyroid levels were at so my doctor could adjust my medications if needed to be.  I went to my normal place and was slightly worried as I heard a 'strange' voice from the room. Thankfully though my good blood taker, H, then came out, saw me kinda laughed said 'oh' and took off into the bathroom lol.  She then came out and told me to come with her.  And said to the other lady that it was her unlucky day as all the hard people were coming in.  The 'other' lady turned around and I realized it was the lady that retired about two years ago. She turned around and laughed and goes 'Oh yeah, I remember you'. So I am well known in my little town lol.  H remembered everything that had to be done (butterfly needle, between my knuckles and I have my own bandaids) and thankfully everything went well and it only took one try.  She joked while she was getting things set up that she went to call the next person, saw that it was me and decided she needed to pee now because she never knows how long I will take lol

So I went to my doctor on Monday and had a very quick, efficient and good appointment.  My thyroid levels are back in the normal range so I stay on the dose that I am on now.  He is very concerned though as we don't know what caused the massive spike three months ago.  Because of this he wants to keep a very close eye on it and see me every three months whereas generally he would do longer time frames.  I asked him whether this could be the autoimmune disorder that Dr. W always knew I had but couldn't pin down.  Dr. O told me that with the connective tissue disorder (that EDS is) and the handful of other disorders that I have, that all of them could be partially autoimmune and probably would never be able to fully pin down without a LOT of testing which wouldn't really accomplish much as I am already on the medications I need to be on.  He said that especially since things can come on very fast and very seriously (like the Vitamin D deficiency, low thyroid, etc) that he believes that this is the autoimmune showing it's hand and 'sabotaging' itself.  The explanation he gave me made a lot of sense and I think it was basically the conclusion that Dr. W was coming too.

So I go back to get new bloodwork and see my doctor in three months and just stay on what I am on as I am 'stable'.  The next appointment my mom will be coming with me as we need to go over my pain medications again and I don't agree to his thoughts about my breakthrough medications so I need back-up lol.

June 29th - Serious Knee Injury and Family Stuff

Yet again it has been way to long between posts.  Not much has been going on medically wise since starting the thyroid medications and things have just been pretty quiet.  My nephew finished grade six with very good marks for him, he amazingly got his junior black belt in kenpo karate at only 11 and things were nice and settled with no word from my brother and I was even able to help out a neighbour by tutoring her grandson so he can get his high school diploma.  We are going to the cottage at the end of August but that was the only thing we had planned for the entire summer so mom and I figured that we would take K and head up to my grandma's house for a week once he was out of school.  We got there, got unpacked and settled in and things seemed to be going well... until that Saturday (29th).

We (me, mom, grandma and cousin) went to go and do some grocery shopping.  After a long (and sweaty!) trip to the store we got groceries for two different family's week of shopping and headed home.  We got home and I was on the back bench seat so was kinda stuck until most of the groceries had been unloaded.  When it was done to only a few items, I went to push a case of water forward with my right leg and ended up dislocating my knee laterally and pushed it up out of the joint.  Mom and my cousin continued to empty the van and then mom noticed that I was pale white, sweaty and grabbing my knee so helped me out of the van, rolled her eyes at how I dislocated it and I went in to the living room with an ice pack and mom went to get me my medications and a drink.  It sucked and I was very grumpy about it.  No one else seemed to really understand what happened (or didn't believe that I could do that much serious damage just from pushing something with my foot).  Basically stayed off it the rest of the day and kept it elevated, wrapped and iced (thankfully I always bring my own ice packs).  Went to bed that night with a pillow under my knee, iced strapped to it and loaded up on pain meds.

On Sunday we headed out to the beach to my aunt's house for Canada Day celebrations.  Spent most of the day just sitting with my knee straight and staying off it as much as I could.  Lost out on fun time though as I couldn't go to mini golf with the kids, to get snacks with my cousins or do a bit of shopping on the strip.  Wasn't very happy.  We headed to the beach to watch the fireworks and all my cousins and the kids wanted to go to the strip to get treats and go to an arcade.  No thought to the fact that I wouldn't be able to go of course but then mom remembered that we do keep a crutch in the van so I was able to hobble along behind them. Thankfully the kids seemed to stay back a bit and stay with me.  Went back for the fireworks then back to my grandma's house.

All hell broke loose on the Wednesday when my cousin had an 'incident' that through everything out of place and added a LOT of stress to the house.  The fact that my knee was injured didn't seem to matter anymore as I had been 'replaced' and was then getting asked to do favours for my grandma and my mom.  Don't even want to get into what happened but it was typical drama for the person and the rest of the entire visit was all about my poor cousin.

I was feeling a bit better the following Sunday and thought I was okay to go with my two cousins, their two kids and my nephew to his work's summer party.  I thought that it was a place with a lot of places to sit down, I wouldn't have to do too much walking and my nephew could just go off and be with his cousins while I sat.  I had even packed a book into the car so if I could find a place I could read.  That's a laugh! Like always the 'adults' wanted to do what they wanted to do (eat lunch) and then the kids wanted to do what they wanted to do (a scavenger hunt that ended in 30 minutes that they could win good prizes with).  Well the 'adults' just said fine and headed to get lunch leaving me standing with three kids (15, 12, and 11) which I were not going to let go on their own!  So I did an entire circuit of this park not once but twice while the other 'adults' ate lunch.  Then I needed a drink so they told me to go get one in the gazebo, well there was nothing so I said I needed to get to the front to get a drink.  Well it was 'let the kids ride this ride first', 'oh they like this ride', 'you guys should do that', 'look at the cute baby animals' and finally 'let's play our round of mini golf cause it's pretty empty right now'. Then I had to go back out to the car to get the kids swim stuff and I didn't have a handicap spot because they had been late getting ready to leave (and I had been up long before we left!). We saw an opening then at the handicap spot so I moved the van closer.  The kids wanted to look in the store so I left my backpack with my cousin to watch, looked in the store and came out to find my bag sitting all alone where I left it with my cousin quite a ways away.  Then I finally got a drink!!!  After a few yards of me limping and being lopsided because I had a full back pack on my shoulder the oldest cousin finally took it from me.  The kids did the water park thing while we sat at the patio and then my cousin had an 'episode' that was embarrassing her husband so we had to leave.  I had told my nephew that he couldn't get fries because that wasn't fair to the other kids, well I go to the bathroom and find the oldest cousin eating fries and gravy so I gave in and got my nephew fries to eat.  I apparently looked really bad at this point because the oldest kid looked at me, got up from the picnic table, bought me a bottle of water and told me to drink it. I was very thankfully as the pop I got early was done in two seconds as I was so thirsty and I would finally be able to take my pain meds. We finally got home and I was glad the day was over!

The next day I literally did not get out of bed.  I was so dehydrated that I couldn't stand up without passing out and my pain levels were so high that I knew I was going to be in a horrible mood if anyone said anything. And I was right when I went out to get a drink and mom goes 'Well isn't it miss. anti-social', so I just got my drink and went back to bed.

Thankfully after one month from when I injured it my knee is feeling somewhat better.  I still think that I did some damage to the tendon but I have no doctor to go to in order to see if I did any damage.  Going to wait until my next appointment (three months from now) and ask for a new MRI done on it to see if anything is messed up. Unfortunately even if it is, no doctor will touch me.  Because of the injury, sleeping on a hard bed and all the stress (which makes pain worse for me as I tense up more) I went through three months worth of pain medications in only two months.  Thankfully when I explained it to the nurse at my doctor's office she didn't hesitate and had my doctor write me a new three months worth of meds.  I am still taking more than I normally would because of it but down from what I was taking.

Thursday, June 6, 2013

May 2nd - Doctor's Appointment (Hypothyroidism)

Wow, I have just had no motivation or ambition in such a long time and it's been well over a month from when this appointment actually happened!  This appointment was actually just a follow up from the blood work and bone density tests that I had done over the last few months.  I actually went to the office with my dad as he had an appointment in the time slot after mine (but he did not come in to my appointment with me).

So, just like a normal appointment P comes and brings me to the back room and asks me they age old question as to why I am there. We go through the normal of blood pressure and weight (I don't like this part lol).  I then tell her that I need refills of a few medications, had planned to ask my doctor to re-evaluate his stance about my breakthrough medications but figured I would wait and judge his stance when I got in to him.  I also needed to get the results of the bone density test I had done a few months ago and the blood work I had done.  As normal I asked to get a copy for my personal records (technically they should charge me for this but in my situation they all agree that me having test results is a good thing to help protect me if I go to a new doctor) so she printed out copies of both tests and handed them to me then sent me over to the next room to wait for the doctor.  Of course I had to look.

The bone density scan showed basically nothing except whatever it means about what's going on around the one eye socket and that I have actually have had more damage in a few areas that I knew where getting worse.  However the blood work results shocked me.  It showed off that my Vitamin D levels are (very slowly!) increasing even though I am still very deficient and should be taking about 8000 IU's daily in drop form (easier to absorb with my messed up stomach).  My C-Reactive Protein is still quite elevated but my GP doesn't seem to think this is anything to worry about as it could just be because of the EDS issues that I do have.  My cholesterol was slightly high and my B12 levels where low but nothing to worry about.  Then was the one that truly shocked me - my thyroid!

I am sure I have mentioned before that I have been thinking that this is a problem for quite a while now even though my internist strictly said that it was working perfectly.  I figured it was fine and hadn't given it another thought in quite a long time honestly.  When I asked to get blood work done (I always go in and ask to get my annual blood work requisition forms a few weeks before I have an appointment so I don't waste time going through an appointment just to get it ordered).  So here I am looking at my papers and out jumps my TSH levels being 'extreme-high' at a level of 6.9!  I am told that this is a very big jump in numbers (I get it tested yearly) and a very high value and that I should be hugely symptomatic.  I am very confused at this and trying to wrap my head around it.

My doctor comes in, looks at my blood work and says 'No wonder you feel horrible'.  I knew at this point the prescriptions I was going to ask about was out of the question as this was going to take up the appointment.  He starts to tell me that my thyroid isn't working much and that I definitely needed to get this settled out.  He starts drawing on a paper a line and says "This is where we start medication, at 25mg, but this will definitely be too low for you so we will start you at 50mg and test again in three months as to how fast we have to increase it to get your levels stable".  He then tells me that the fatigue, head-aches, increased pain, sleeping problems etc could all be because of this.  He originally was going to change one of my medications around but decided against it as he wanted me to be stable as I was and not change anything while working out the thyroid problem.  He talked some more and told me that I was going to be on the 50mg dose for three months, get blood work done and then see him to figure out what the next dose would be and repeat it until we get a stable level.  He also kinda sighed and looked at me and says, this is another one that you will be on for life. Which was kind of a relief (his reaction not being on it) as he has finally realised that despite the amount of medications that I am on, I want to be on the absolute minimum that I can possibly get by on.  He hands me the papers (prescriptions that took up three pages, the test results back, and new blood work papers) and tells me that I will feel a lot better when we finally get the levels at a stable level.

As we are leaving the office dad pipes up and says, "So your thyroid stopped working huh, I guess your at that age when everything starts to fall apart".  First off I was kind of taken aback that the doctor had told him (even though he knows we are an open family and mom comes with me to most appointments) and then that he thought that 31 was an appropriate age to start falling apart!  We went to the pharmacist and she went through all the instructions about the medications and gave me some pamphlets about hypothyroidism.

When I got home I looked up hypothyroidism and started to feel a bit of hope that a bunch of the problems I am experiencing could be because of the thyroid and getting it under check could stop these problems! I also am wondering if I actually have the auto-immune version as it seems to make more sense medically, and could also explain the c-rp and feelings that my rheumy always had about me having an auto-immune disorder.  I will ask my GP about it when I go back to see him at the end of July.

This has kind of thrown my for a loop honestly.  For the past decade the only things I have been diagnosed with have been things that I researched symptoms, connections to EDS, specialists, treatment and testing and taken it all to my doctors and got the diagnosis.  This one I had no clue was coming. I figured I would walk out of the office with my prescriptions refills and test results with not issues.  Instead I walk out with another prescription for the rest of my life, follow-up tests and appointments.  Just an odd feeling.

As a note as of today (June 6th) I certainly hope we can get my thyroid levels figured out fast!  I have felt horrible ever since starting the medications.  We have been having freaky and unstable weather around here that would normally cause problems but it feels like it's more involved than just the weather.  Honestly, I think some mild depression has set in as well since this was a shock and something that is pretty important to my health.  Will be interesting to see what my internist says when I see her later this summer after years of her telling me my thyroid was fine and I had no symptoms of it. 

Based on Wikipedia's site on hypothyroidism I have 10 out of 15 of the early symptoms, 7 or 8 out of 14 of the later symptoms and 9 or 10 of the 20 uncommon symptoms.

Thursday, May 9, 2013

Bloodwork - April 16th

I am not going to post all of the results of the bloodwork I had done but these are the values that are not in the normal range:

  • RBC: 5.36 (4.00 - 5.10)
  • Lymphocytes: 3.6 (1.0 - 3.5)
  • B12: 191 (198 - 615)
  • TSH: 6.90 (0.35 - 5.00)
  • C-Reactive Protein: 28 (<8)
  • Vitamin D: 38 (75 - 250)
The B12 and Vitamin D deficiencies are ones that I am used to. That level of deficiency in the vitamin D levels is actually good as my last number was 17, so to be at 38 it has gone up a good deal and should go up more during the summer.  B12 is one that I go back and forth with being normal and being low, at one point I even was over treated and had levels that were in the unhealthy range as they were so high! 

The C-Reactive Protein results weren't surprising either as they have been raised the last few times they were tested but my GP just brushes them aside as being inflammation from EDS, even though I try to tell him that EDS does not cause inflammation.

RBC and Lymphocytes being raised I have no clue what they really mean.  Apparently RBC can be raised if you are dehydrated which could make sense as I had to fast for the testing.  I have looked and if you have the flu your lymphocyte levels can be raised. Since it is such a small deviation from normal values and that I have been fighting illness for months now, I imagine these levels aren't too surprising.

The TSH was shocking! But that will be in another post to come, hopefully this weekend :)

Bone Scan - Results

Bone Scan, Spot Views and Blood Flow and Pool:

History: Patient has Ehlers-Danlos syndrome. On multiple medications. The patient complains of pain all over, including the back, shoulders. Pain at the hips. Muscle spasms. Decreased range of motions.

Technique: Following the intravenous injection of technetium 99m MDP, whole-body blood flow and pool images were acquired along with whole-body delayed imagine and spot imaging involving the head, neck, feet, forearms, hands and wrists.

Findings: Comparison bone scan of 2010

On the whole-body blood flow and pool imaging, no regions of hyperemia are identified. On the whole-body delayed imaging, there is increased uptake involving the maxilla especially towards the left lateral aspect and also at the right mandible laterally. This is felt to be due to prior dental intervention. There is a new punctate focus of increased uptake however superimposed to the region just above the right orbit, of uncertain etiology. This was not seen previously.

No widespread abnormal uptake is seen however to suggest metastatic disease.

There is some mild increased uptake at the right patellofemoral joint which could represent some mild degenerative change.

On imaging at the feet, no significant punctate region of increased uptake is seen to suggest significant arthritic change or underlying fracture or other abnormality. Spot imaging at the forearms also demonstrates no punctate region of increased uptake to suggest an underlying abnormality.

Impression: No widespread abnormal uptake to suggest metastatic disease. There may be some mild degenerative change at the right patellofemoral joint and evidence of prior dental intervention at the mandible and maxilla. There is a punctate focus of increased uptake overlying the superior aspect of the right orbit, of uncertain etiology. Further assessment via CT of the head and orbits could be acquired to see if there is a true underlying lesion at this site.

Internist Appointment - February 7th

Okay, I am trying this for the last time!  I have tried to post an entry about this appointment many times over the last few months and always something happens and I lose the entire entry.  Since I have written this so many times, as well as it has been so long since the appointment, I will probably forget quite a bit of stuff but here is the basics. It was interesting as Dr. C leads us (mom and I, she goes with me to specialists appointments as back up and her own opinions on my health) back to the office and introduces me to a student and asks if it is okay for her to sit in on the appointment too but that if I don't want her to that is perfectly okay. Obviously as an EDSer I took this as an opportunity that I might be able to educate a student on EDS.

We get settled in and she briefly goes over my history of EDS, autonomic dysfunction and gastroparesis for the student to get caught up and then she asks how I am doing.  I tell her that on the whole things are pretty good but I do need to change one of my medications.  She asks the student what she would use in my situation and she said a beta blocker then Dr. C goes into explaining to her that I have been on beta blockers for years now and that for some strange reason we have found that I benefit greatly from alternating my beta blockers every year or so as I get tolerant.  Dr. C asks which beta blockers I have used and then asks me which one I want to be on next. I had decided that atenolol would be what would be best for me next passed on my history and symptoms.  Dr. C turns to the student and says that I am highly involved in my own medical problems and that I know more about my body, conditions and what medications could help than any doctor will ever know.  We work on decided the dosage as the last time I was on atenolol I was only taking it once a day and that a few years ago we switched to a twice a day dosage instead of only one as it stays in my system better and controls my symptoms better.  She comes up with a dosage and asks the student what she thinks.  She says she has never heard of twice a day dosing and wondered about if the dose would be too much for me. Dr. C just smiles and goes "Stacey is very smart, she has her own blood pressure machine at home and keeps track of symptoms and levels. I trust her to work within the medications and levels to find the best for her" and that I have changed my dosage in the past as she was confident I was capable of making choices.

I then told Dr. C that I noticed something quite strange a few months ago. I told her that I had a sinus infection and was put on Biaxin for a week and the entire family noticed that I was actually eating at least one full meal a day! I generally might have two snacks and a half serving of a supper meal.  We know this is because of the gastroparesis and autonomic issues but just left it at that.  Dr. C just grins from ear to ear and looks at the student and asks the student if she can explain.  The student looks hesitant and says that she has heard of a certain set of anti-biotics can help with stomach problems and then she mentioned a certain medication that Dr. C didn't agree with so had her write down to look up that medication as well as the medication that she was going to try me on in connection with gastroparesis. She then looks at me and says "I am sure you did your own research and are willing to experiment", which I said of course! She tells us that she wants to try me on erythromycin twice a day, one about a 30-60 minutes before lunch and another before supper.  Mom chimes in now that my sleeping schedule is so messed up that I never have lunch and really only eat a partial meal at supper time.  Again, Dr. C says that she would like me to take it before supper for sure every day but that if I am up and going to be eating lunch then I can take one then. Basically telling me again to do my own trials about it.  So she started me on 250mg of Erythromycin daily before meals and wants me to try it for two weeks and then call her back and if it works then she will write for another six months and then have me come in again to talk about it.  At this point she looks at the student, then mom then me and says she has to confess something.  She has tried this medication quite a few times with patients and has NEVER had it work.  Then she kind of laughs and says that I am a guinea pig anyways and using some strange logic that meant that it should work really well on me lol.

As she was writing up the prescriptions I started talking to the student and asked her if she had seen EDS and if she knew anything about it.  She tells me that she has seen someone with it when she was doing family practice and that she knew about all the 'tricks' and that they did discuss it a fair amount at school. So it sounds as if EDS is starting to get taught a bit more every year which would be amazing!  Of course as we are leaving Dr. C jokes "Did you notice I didn't bring up the colonoscopy?" and we both just laughed lol (When she did the endoscope she mentioned right before they 'knocked me out' that I would most likely have to do a colonoscopy next. Well with the horror of the first scope neither of us even want to consider doing a colonoscopy! She says she will have me put under a full general anesthetic when it comes time that I really do need one).

Since I am just posting this now I will tell you the results of the medications...... They are amazing!!!!  I am eating two or three snacks a day as well as a full meal at supper time!  I have been on it for three months now and feel so much better!  We always kinda wondered if I was malnourished but we know for a fact now that I was malnourished and suffering from it for a very long time.  I have so much more energy!  It's just amazing the difference one little pill makes.  I was even getting by with 2 or 3 hours less sleep a night (until the entire family caught this horrible cold that we have been passing back and forth for a few months now!).  I have not seen Dr. C since she prescribed it but she did renew my prescriptions for another 6ish months and I see her again later on in the summer.

Saturday, March 16, 2013

Bone Scan - February 4th

So this test was all set out really fast!  I saw my GP on Thursday afternoon, got a call Friday for an apt and was in for the test Monday morning.  I touched on this in my post about going to my GP, my rheumy had a handful of tests that he liked repeating on a consistant basis (bone scan, dexa scan, neck x-rays/MRI's and lots of different blood work).  Mainly his goal (which I loved!) was to look for problems before they started. This is how we found out about the osteoporosis so quickly.  He believed that we knew what was going to occur in the future (osteoporosis, auto-immune problems, disc changes in my neck) and it was better to have a base line test and keep a close watch to see if anything started to show changes.  At this point I had not had a bone scan* different test that I always make sure that for any type of scan I wear yoga pants & a sports bra so that there is absolutely nothing metallic that can interfere (I haven't had to put on a hospital gown in years :D). So I go into the room and already know that something is different this time as instead of just sitting in a chair she has me get up on the bed and get all comfy with pillows and supports and stuff. Once I am comfortable she then brings out the metal case with the dye in it. I give her the 'my veins are...' spiel so she says she will put in an IV start first and then put the dye through that.  She used the vein on the back of my right hand and got it in on the very first try!!  She then starts up the machine and explains to me that this first test will show if there is any blood pooling in areas of the body.  It was a short test maybe 15 minutes and then I was on my way for the next few hours.  Thankfully she told me that I was to be back at 1pm instead of the 4pm time slot I was initially given!

We did our normal thing, went out and got some breakfast at McD's (I love their hash browns and their egg McMuffins remind me of my times at university. I only get this 'meal' if I have early morning doctor's appointments / tests).  We did some shopping and just killing time, all the while I had a bottle of water with me and I had to have drank at least 1.5 liters before going back to the hospital! (They want you to drink lots so the dye gets circulated through your body)

We got back to the hospital and I was taken right into the scan room.  She got me up and comfy on the bed and we discussed that I had EDS and what areas I am having problems with (ugh, everything!!!) and which injuries I have had (dislocations / sprains etc).  I had been concerned as I figured my GP would have ordered just the normal scan where my old rheumy would always ask specifically for hand and wrist scans as well.  I had nothing to be concerned about!  All in all she did seven separate scans. 1) Full Body; 2) Ankles; 3) Feet; 4) Neck & Head - right view; 5) Neck & Head - left view; 6) Left Elbow & Wrist; 7) Right Elbow & Wrist.

We were all done and out of the hospital a little over an hour later with the 'warning' that I was not allowed to leave the country for 72 hours lol (That part always freaks me out a bit, but also is quite funny). I was quite achey for a few days afterwards but that could have been from the dye, the increased pain from lying still so long or a combination of the two but keeping on top of things definitely over ranks a few achey days!

* There are two types of bone scans, ones that just take pictures a few hours later or the three phase one that I had. According to Wikipedia the three phase test is for:

"If the physician wants to evaluate for osteomyelitis (bone infection) or fractures, then a Three Phase/Triphasic Bone Scan is performed where 20-30 minutes of images (1st and 2nd Phases) are taken during the initial injection. The patient then returns in 2-3 hours for additional images (3rd Phase)."

Friday, March 8, 2013

Bad Week

Well I have two entries to write out but I just haven't got to them yet. The first is about having a bone scan and then a recap of my appointment with my cardio / GI / internist that went well. Basically we came up with something that is giving me a LOT more energy. However that has it's down fall too. This last week has been hectic:

Friday - Working at nephew's book fair then over to a friend's place for 'Girl's Night'
Saturday & Sunday - Not feeling well, mom tells me I should stop working the book fairs as they always end up with me getting sick and maybe we shouldn't keep pressing my luck and get me real sick.
Monday - Working at nephew's book fair
Tuesday - Getting some things done around the house
Wednesday - Tutoring for 2 hours, out for supper, some shopping and a movie with mom
Thursday - Went shopping in the states until 2, had a nap then my friend came over for a few hours in the evening
Friday - A small amount of shopping with mom (had to pick up some things at a store that is going out of business)
(Plus tomorrow I am going to my friend's house for "Girl's Night" and Sunday to her parents house for her family birthday dinner)

It's amazing to have energy but the problem was that before I would always end up exhausted before the pain set in so I had to rest before hurting myself. Now I have energy so I just keep going and it's leading to a lot of pain problems. Wednesday night at the theatre I was so close to crying in the theatre I was in so much pain, even after a double dose of breakthrough meds!

Then today mom and I had to go to the store to get some towels (One of my Christmas presents from my parents was that they are going to redo my bathroom in a zebra pattern) but the store closes in a week so wanted to get it while I could. Then mom informs me that she has some grocery shopping to do as well. By the time she was ready to check out I had to go sit on the bench and wait for her. Got home and crawled back into bed. Was in too much pain to sleep but it was the only way I could be bearable. Lying in my warm waterbed was the only way to get comfortable.  Then tonight I don't know what was going on but I had my pain meds and had a heating pad on my lower back, up to my mid back then shoulders than neck and now back down to my lower back.

I am getting very down about the amount of pain. I finally have energy but I am in so much pain I can't enjoy it :( My breakthrough meds are useless, I might as well be eating tic-tac's and unfortunately my doctor will not prescribe the other breakthrough meds that I usually rotate with so I am taking at least one pill a day now with it doing barely anything and advil only helps slightly with some of the muscle pain. I don't want to increase the dosage of my long acting meds but I don't know what else I can do :(

Thursday, February 21, 2013

Mom update

Wow I didn't realize I hadn't updated on what went on with mom yet! I swore I had written it up already but it must have been all the emails and phone calls I made during that week mom was in the hospital.  Lot's happened so I am going to just do point form what happened:

  • The resident and nurses kept telling mom and dad that she could go home the next day (starting all the way at the beginning of the week saying she could leave Tuesday!) Her doctor knew something just wasn't "right" though and kept wanting to do more, wait for more etc.
  • The found that she had an increased pulse rate that was sitting around 100 (which we all know so much about!) and after many tests and worries it was found that she had a blood clot in one lung. However it was not in a dangerous area at all and they say that it could have potentially been sitting there for years or it could only be from the last surgery.
  • Because of this we entered into the realm of blood thinners :S Even more so we entered the realm of home health care for a brief period of time with so much conflict. Big city told mom and dad that a nurse would come to the house daily to give her injections for 30 days. Our town told us that a nurse would come out for three days to teach someone how to do the injections.  Reality - A nurse came out, went over all the stuff associated with the injections and then asked who would be doing the injections. Neither mom or dad could muster up the courage to do it, so I stepped forward. From then I had to giver her 38 injections total!
  • Mom went back in early January for her follow up and was put on a pill form of blood thinner. We had to do six more days (with horrible pre-filled syringes instead of me having to draw up the dose myself) and then she was switched fully to pills.
  • She has had a lot of blood work done since is now on getting tested every other week) and her values have been right in the appropriate scale and has only had to take one pill a night when generally I understand this is abnormal as it usually takes a lot of play to get the dose right.
  • She goes back the second week of March to find out about the blood clot, we assume another CT scan will be done.
She is doing really well.  She came home after a week at the hospital (last December) and was basically at the same level she was before surgery. She recovered from this one, which was much more major and involved a whole lot faster than the original surgery (which was basically just exploratory). Everything is going well and we even are wondering about getting my blood clotting levels tested as the few scrapes she has got while being on the blood thinner are healing very abnormal to her but very normal to how I heal. The 'bumpy' scabs, extended healing time, easily 'knocked off' scabs etc so we are going to ask about getting my INR levels tested as a curiosity.

GP Appointment - January 31st

This will be brief (for once!) I promise :) I went to see my GP and had a short list of things to go over and we managed to get them all covered with no real frustrations or upsets. The easy part was just getting my pain medications refilled for the next three months. He still doesn't want to switch me to breakthrough med #2 as he thinks it's a "dirty" drug. No mention that I had been on it for like 5 years and have never had an issue for it. At the last appointment he was confused as he asked me who prescribed it to me last and I told him that he was the last. He is fine switching between slow-release #1 and #2 but only wants me to be on breakthrough #1. Back then he told me that I could increase my dose as I was only taking one or two doses a day (which generally means it's time to change things up) but that I could take four to six doses a day (yet only gave me 100 pills for three months). Anyways that will be the challenge for the next appointment.

A few days before the appointment I had a scary incident where it felt like my head was going to explode it felt so full of pressure. I have had this before but this night I was getting slight blackouts on the edge of my vision, my eyes actually hurt and my ears kept throbbing. I heard there was a medication that would help with headaches and help with the pressure feelings. So I asked my doctor about it but he read it interacted with one of my other medications (which could be stopped if I had to) and read that it was a migraine medication. Out of nowhere he comes out with "these won't help you, you don't have migraines you have pressure build up headaches". My jaw just about dropped!! We spent years trying to figure out the headaches and it was only a few years ago that my internist confirmed that they were because of the neck issues. So I have my doctor saying that my headaches are from pressure build up in my brain!! It's so funny how when you drop trying to get someone to understand what is going on, is when they come out with it all on their own. So anyways, he agrees to try something else for headaches and actually wants to put me on a different AD as it is supposed to have less side effects. I am mainly wanting to get rid of, or at least decrease, the dry mouth issues as I hate having dental work every year (and already know I will have to go in again which is a horribly defeating feeling). He doesn't want to change the meds though until the weather stabilizes. This is twofold a) depression is bad this time of year and he wants things to be less depressing weather (if that makes sense) and b) with the big changes in weather that will affect the headaches as well so it's not the opportune time to work on headache meds. I am totally fine with this as long as he is willing to put this in action when the times comes.

Lastly I asked him about getting a new bone scan done. He turned and looked intrigued and asked why. I told him how my old rheumy liked to get one done every two to three years to keep on top of everything and to see if there are any changes in the bones or joints that are occurring that we could use for preventative instead of dealing with them when they become a problem. Surprisingly he also thought it sounded like a good idea and had the receptionist get one set up. And that was the entire appointment. I know it doesn't seem like much but to get all those issues addressed in one visit was very productive.