Tuesday, May 29, 2012

Appointment with Dr. B (GP)

This appointment actually happened on May 24th but I am just getting around to typing it up now as my shoulder is still causing problems and haven't had much time that I could sit down and concentrate and remember all about the appointment. Originally this appointment was made to discuss my shoulder issues, go over my report from Dr. M (the crappy OS mentioned in this post) and to get my medications refilled.  But of course that isn't really how it turned out.

I had a mid-afternoon appointment and knew that I would end up being there a while as there were a handful of people already in the waiting room when I arrived.  I finally got called and went into the nurse's room (we will call the nurse "P") where she does the pre-appointment part where she asks why you are there, gets any paperwork ready and does all your vitals.  Thankfully I had made a list of all the things that I needed to get addressed during the appointment.  P did my vitals then I started on my list of issues.  I gave her all the paperwork for my dental surgery (Going to be on June 18th for those who are interested - just fillings though), asked about getting my vitamin D levels checked, gave her a list of the medications that I needed refilled and mentioned about the xrays I had done (both knees, right hip and right shoulder before seeing Dr. M; right shoulder a couple of weeks ago when I injured it).  P filled out all the paperwork for the dental surgery, wrote up a blood work sheet so I can get my Vit. D levels checked, printed off the latest shoulder xray (normal of course) and printed out the medications that I needed to refill.  Then it was just waiting for my doctor to become available (a drug rep and the building owner stopped by just before my appointment so they got in first :( ).  I was quite nervous about seeing Dr. B based solely on the issue with Dr. M and the fact that my mom was not at this appointment with me (Dad was out of town and mom had to be at home for when K got home from school).  I am going to put all of what happened in little sections so I don't forget anything and it doesn't get too confusing!

Pre-Op Paperwork - He read through the diagnosis's that I have (Mitral Valve Prolapse is on there so my old cardiologist must have diagnosed me with it, he just put a question mark beside it), basically MVP, EDS, Sinus Tachycardia and Syncope are listed.  All my medications and doses are also on the form.  Dr. B then pulls out a report he got from the anesthesiologist and was quite impressed by it.  It went over the no locals aspect and said that they had to be very very careful when moving me (this is something that I did NOT tell him), everything should be routine but that I may need to have emergency intubation and resuscitation which sounded a little scary to me but my doctor seemed pleased by it and said that it was one of the longest reports that he has ever seen from an anesthetist.

Testing - Dr. B agreed completely with the suggestion of getting my vitamin D levels rechecked to see where they are and what we need to do in regards to dosing the vitamins that I do take on a daily basis.  I then asked if / when I should get another DEXA scan as it's been slightly more than two years since I had my last one and I have been on an osteoporosis medications for 20 months now and would like to know if we are making progress or if we should be changing things up or what ever.  At the very least a new baseline should be established.  Dr. B fully agreed with me but does not want to do ANYTHING until after the surgery. He then checked my chart and saw the medication that I am on for the osteoporosis and says that there is a new formula of the medication that you take weekly instead of monthly that he thinks will be a better fit for me.  You don't have to follow any of those stupid don't drink for x minutes, don't lie down for y hours, don't eat for z minutes.  Then the fact that it has to be the first thing in your stomach when you wake up and taken with an entire bottle of water which makes it tricky as I take my morning meds right when I wake up also.  Apparently this new formula of the drug does not have all the restrictions that the old one has and is supposed to be easier on the stomach which is definitely important especially after discussing gastroparesis and medication absorption.  He also says that it should most likely stop at least part of the heartburn issues that I get after taking it.   The only down side to this medication is that I have to take it weekly instead of monthly but that's not a big deal as I do up a weekly pill organizer every week anyways to throw it in.

Medications Refilled - Figured this would just be a quick signature on the already printed off script but was surprised when he went to hand me the paper and then quickly pulled it back saying "Wait a minute, what do we have you on now?" (This is because we switch between two different long acting and two different breakthrough meds to keep down tolerance).  He looked at what I was on and said that there is a new medication either just out or coming out soon that is a narcotic but it also has neuropathic pain reducing qualities too it as well.  I asked him if that meant I might be able to combine my pain medication as well as the medication that I use for nerve pain but he wasn't sure but that we would look into it more after I have the surgery.  He didn't give me the name of it as he wanted to do some more research on it himself and isn't even sure if it is out on the market yet.

Shoulder Issues - The final issue was my shoulder.  He asked how the appointment with the OS went and I told him all that happened.  He very quickly skimmed the report and at the end it said that I had not decided if I wanted a new MRI ordered or not (huh??).  Anyways I told him that he wanted me to do physio but would not set limits, when Dr. B asked why I said I didn't know but that I wanted a time limit to try it or something and Dr. B says that's totally reasonable and asked why he wouldn't so when I told Dr. B that he said physio doesn't work like that he was confused.  He seemed disappointed because this doctor is so young and Dr. B thought that he would be the best chance because he might be more open minded.  He then told me that he wanted me to call the OS's office to get a new MRI ordered and if the OS won't order it then to just go right back to Dr. B because he feels it is definitely needed.  I then asked him if I could have a copy of the report for my files and he said of course and printed it out for me.  I told him that I just like to keep everything together just in case I need it down the line and he said that with the number of doctors and problems I have going on that that is a smart idea :)

So I left the appointment with a stack of papers - report of the shoulder xray I had just after injuring it, prescription for my pain medications, a requisition to get bloodwork done again, a copy of the forms that had been filled out for the surgery, the report from the OS and a card to go back two days after my dental surgery. 

However, by the time I had read through the report from the OS (Dr. M) I was furious!!!  So many inaccuracies and plain out lies!  I gave in and called the office on tuesday (May 29th) and as of today (June 1st) I have not heard anything from the office.  I am going to give it another week and contact my GP again about it.  After reading the report I don't really care to ever see this OS again.  There is enough contradictions, lies and things completely omitted that it is going to end up being an entire other post that I will get up this weekend (hopefully!).

Another Epiphany!

Mom and I are just sitting upstairs and watching "Anderson" on TV.  He has a family on whose daughter died because of a caffeine overdose after drinking two cans of Monster Energy Drink over a 24 hour period.  There was then a doctor on the show who explained what happened and was very informative and lead to mom and I having an epiphany.

The doctor said how that caffeine can cause tachycardia and vasoconstriction type of problems.  This girl also had MVP (which my doctors can never agree if I do have or don't have - apparently it's pretty common anyways).  I said something along the lines of "Even if I could drink caffeine, it looks like I shouldn't anyways".  Then mom comes up with the theory that it's the caffeine leading to more tachycardia and blood flow issues that cause the bad headaches I get.  We always said that I couldn't have anything caffeinated but it was weird because I could have a tea or hot chocolate and I can eat chocolate no problem.  But those foods probably have a small dose of caffeine compared with a can of pop. This really really makes sense and answers a bunch of questions.  Even the fact that when I get another type of headache eating chocolate actually helps them.  That might be because of vasoconstriction causing those type of headaches.

Friday, May 25, 2012

Internist / Cardiologist / Gastroenterologist Appointment

(Note - This appointment happened on Tuesday but as this has been a very busy week (at least by my description) I am just getting around to typing it up tonight.)

This appointment was a follow-up appointment to go over the results and findings of the endoscope I had done back in January and the echo cardiogram I had done earlier in the month. I wasn't too happy that I had to wait so long for an appointment to go over the scope results (which I had already got from my GP) but the office manager / nurse there says she likes to have all tests done before follow-up appointments; and really since there wasn't much to go over from the scope it saved me an appointment.

We get taken back to the office and she comes in and asks how things are going (okay) then basically a 'what's this appointment for' type of question.  I started with the scope results and was pleased to find out that she saw no sign of celiac disease (yay!) but I definitely had a motility issue going on.  She asked how the dilation was and I told her that it does seem to help a bit in the fact that I can eat faster and take bigger bites now (which is a good thing compared to my old normal!) but that it also lead to a LOT more heartburn.  She said that unfortunately that is common because they are basically taking some of the elasticity out of the esophagus so things could go down easier which leads to things coming back up easier as well.  I told her that I am on a prescription medication (losec - it's not over the counter here) for the problem but it seemed to not be working as well lately and that I have had to use some over the counter antacids as well.  She said that was fine and she actually preferred me to do it that way and only when the heartburn is daily and more severe would be when she would increase my prescription medication.  She then suggested instead of using the medication (zantac) that because of my absorption issues, bone issues and EDS she suggests that I instead use tums as it would be broken up before swallowing and also has a calcium dose in it as well (mom told me on the way home that my grandmother actually used tums as her calcium supplement).  She said the vitamin D deficiency that I have could be partly from malabsoprion but also because our weather but she suggested getting it rechecked to see if they are going up and for me to keep an eye on any vitamin deficiencies as they could occur.  Mom asked her about medications and if the gastroparesis has any affect on them and she said that it could as it might take longer for the medication to get into my system and some medications could cause nausea if they are a more rapid release med that ends up sitting there until my stomach is ready to work.  I then told her that I had to stop all of my vitamins in pill form as I would take them at supper, eat my supper and then be very very nauseated for a good couple of hours each night.  I told her that I now get my vitamin D in drops, my calcium in soft chews and B vitamins in a gummy form.  She seemed very impressed that I figured this out on my own and said that that is the best way for me.  To use medications / supplements that are easier to absorb instead of just pill form.  Okay that's it about the stomach issues.

So we then turn to look at the echocardiogram that I had done and she said that it was perfectly normal and that nothing showed up, the only thing of note was my pulse which we already know about and are dealing with.  She talked about mitral valve prolapse as my old cardiologist said I had it but it didn't show up.  She said that it is hard to catch in an echo because it is a dynamic problem and an echo is a static test. Meaning that the opening and closing (or backwards closing) of a valve could be missed during a test but that it was okay anyways because the only problem would be if it was regurgitating.  I asked about getting dental work and she said that regulations had changed and even if you have MVP you don't necessarily need them any more.  She then had me get up on the exam table to take my blood pressure and was slightly concerned because my top number was in the 90's (looking back I had been sitting for a long time then quickly got up and on the table - POTS) and that I should use our home monitor to take readings for an extended time just to see what it shows.  Then the shocker - she doesn't think I need to be monitored heart wise anymore!  Unless something comes up or my symptoms change she thinks I will be fine.  I wasn't completely comfortable with that so she said that she can do an echo every other year or so if that would make me feel better (which it does!).

At one point, when she was going over any changes she asked about weight changes and I said that no there were none even though I was actively trying to lose weight.  She then looked at me and told me to stop.  She said we already know most of your weight issue is solely a medication issue and a malabsorption issue and as long as things were stable I should just let them be.  She said that is the key word for you - stable.  If everything in my body is stable then I shouldn't do anything to upset that balance.  Mom and I talked about it and realized she is right.  We know that my excess weight is not of my doing (did a full month of eating only 1200 calories a day which should have seen my lose 6 - 8lbs and I didn't lose any) and that my body is holding on to it for some reason so I shouldn't try to upset the boat.

Then the final surprise..... I was 'dismissed'!!  She feels that we have got things to were they are stable and good and don't really have any active problems going on that haven't been addressed.  Of course she will still do the echo's and if ANY things comes up health wise with me she is 100% still going to be there if I need her.  Surprisingly I am completely fine with that.  She was able to get a lot of questions answered for me over the last few years - the autonomic dysfunction, a few medication changes, all the new gastro type of disorders and a lot better heart monitoring than my last cardio!  The only bad part about the appointment was when she told me that there is no new rheumy coming to down and that she truly feels that I need to be seeing doctor's in teaching hospitals and big cities.

Another new post should be up soon about my positive appointment with my GP (and information from the report that I just got back from the ortho!)

Thursday, May 24, 2012

Shocking week!

So not only did the appointment with the anesthesiologist go well, my appointment with my internist/cardiologist/gastroenterologist on Tuesday went really well and my appointment today with my GP went really well!!  Shocked that I have had three good doctor appointments in a week!  However, both of those appointments were quite lengthy and a lot of information was gone over so it is going to take a bit to get them all up and posted on the blog as I am still having shoulder issues and can't type much at a time.  But there will be two new and positive posts up here soon.

Oh, I also got a call yesterday from my dentists office saying that a date had just come up so they were able to get me in on June 18th for dental surgery.  I am so glad that it will be all over and done with before the summer really starts (K is in school until the 28th).  I have already had the anesthesiologist consult done, went for my pre-op GP visit (to clear me for surgery) and I go for my pre-op appointment at the hospital on June 1st.  So I will be glad to have this over and done with!

More posts coming soon :)

Quick Edit - I also had an epiphany on the way into taking K to karate last night.  Mom and I were going over the report that I got back from the ortho that I saw a few months ago (more to that in the next post) but we got talking and about for some reason all the pieces dealing with EDS (locals, sedatives, diagnosis, surgeries etc) all fell into place in the best way possible.  One example is that it was good that my wisdom were so impacted because that meant it was done under a general anesthetic at the hospital.  Then I ended up with an infected bone chip that I went back in to the dentist for and that is when we found out that locals didn't work for me.  If my wisdom teeth hadn't been impacted I would have had them removed with only locals.  And if I didn't get that bone chip we wouldn't have known about the locals.  Anyways on the way in I realized that all my joint problems actually DID start when I was grade nine.  We always thought that it all started when I was in university and that it was the stress of the program and the knee surgeries that 'brought out' the EDS.  But in grade nine I remembered that I had tendinitis in my wrists, was in physio for my knees and I was spraining my ankle constantly when I was in grade eight.  They always say that hormones and stress can bring out the EDS or make it worse and it appears that both were right in my case!

Tuesday, May 15, 2012

Slightly shocked!

So on friday I had my pre-op anesthesiologist appointment for the dental surgery that I have to have done (but still don't have a date for).  It was at 8am in the morning in town (20 minute drive) so that sucked!  I had all the paperwork done and figured it would be an in and out appointment.  I was kind of right.  I get called back and the doctor (can't remember his name, he had a strong accent and his last name was quite long) and we start going over the paperwork.  Of course one of the first things is medications.  He asked why I was on the pain meds and I described that I had EDS and went into the little talk.  "It's a connective tissue disorder that affects the collagen in my body.  Main problems are my joints because they dislocate and become injured very easily".  I then show him the thumb to wrist and backwards fingers because he looked honestly interested.  I felt bad though as I usually take the article dealing with EDS and local's but figured I had done this enough with no doctor's looking at it so I gave up.  We talked for a good five minutes just on EDS and how it affects me and how it would affect or change the job of the anesthesiologist in the operating room.  He then asked about the beta blockers so I go "Well I have a condition called autonomic dysfunction..." and he interupts and says "Oh I learned about that seven years ago!  Is that part of your syndrome?" and seemed really excited about it and started asking a whole lot of questions.  After like another five minutes talking about that.  He then continued with the paperwork, asked about anesthetics, was very interested in the fact that the local's don't work and then asked if I had been officially tested for an allergic reaction to local's! I had never heard of that.  I just said that I figure because they don't work anyways it doesn't matter if I have a true allergy or not.  Might ask my GP about it next appointment though.  He did the breif physical at this point and asks to see the range in my neck then kinda grinned and said "I guess we don't have to worry about that huh?".  On the way out he said he was glad to meet me and that I was giving him a lot of reading this weekend cause he was going to go and learn more about EDS and refresh himself with the Autonomic Dysfunction.  Unfortunatly because I don't have a surgery date yet there is no telling if he will actually be my anesthetist or not, but he took really good notes in case it's someone different!

If you remember, last week I had xrays done on my shoulder.  Well I called the GP's office and of course no abnormalities showed up.  In a way I was hoping something would show up for once that can be fixed.  Guess I will have to see wha my GP is going to do about it now.  I am already wanting to ask for an MRI since mine is so old and done before I injured the shoulder.   Thankfully he is back in office again and I have an appointment on thursday to see him.  Will have to get started on my list of things to go over soon so I don't forget anything!

Sunday, May 13, 2012

What A Tuesday!!

So last sunday I was chasing our little jug (half pug and half jack russel) and went to get something from him when he was under the stereo.  I got down on my stomach and reached my right arm out under neath like I have done so many many times before.  This was different.  I felt almost like a tearing sensation instantly.  I some how got up and sat back down on the couch.  Mom did the normal "Oh now what did you do" until she looked at me.  I had the hallmarks of bad pain - sweating, pale, dizzy, and clutching my shoulder.  We instantly put ice on it and mom asked if I dislocated it.  It didn't feel like that type of pain though.  I took pain killers and iced it the next day but by tuesday it was getting worse.  I have actually lost ROM (range of motion) which I have never ever done - even after surgery or bad dislocations.  My collar bone is sticking out quite a bit further than the other side and I can stick my thumb in behind it.  Mom then decided that we needed to go and get it checked out.  As we had another appointment that day we stopped off at my GP's office to ask if they could order xrays or if they thought I should go to the ER.  The nurse said they would write up a request for it and as I already have pain meds it was decided that the ER wasn't necessary.

That would have to wait though as I had to go and get my yearly echo done on my heart.  The test went by with no issues which is great but the doctor doing the echo was interesting.  He made small talk for a bit and found out the town that I used to go to school in and wondered how often I go up there.  Then he seemed really interested in my EDS and specifically the type of pain that I had, what areas, what treatments I have tried and on and on.  Near the end he goes to write something down and then hands me a post-it note with his name and phone number on it and asks that the next time I am in the other town that I give him a call because he would be very interested in seeing if we could get my pain under control!  I was absolutely stunned as was my mom.  Very greatfull as well that he has taken this interest and actually wants to work WITH me and tackle the chronic pain in my body!  When we got home later I, of course, googled him and found out that he is at a clinic called natural drugs & accupuncture therapy.

After the appointment for the echo it was off to the hospital to get xrays done on my shoulder.  Thankfully it was not that much of a wait and I was back getting them done in no time.  I go in and they ask whay are you here (injured shoulder) and underlying conditions (EDS) and when it happened (sunday).  The one lady then goes to line me up but couldn't get one shot so the other lady had to come out to do it.  However, this lady was NOT gentle with my shoulder and dug her fingers in all around the front of my shoulder because my collar bone was not 'right'.  This lead me to remember that a few years ago when I got my first cortisone shot in that shoulder my rheumy remarked that I had really strange collar bones and that they were hard to 'pin down'.  They also did a shot that just about had me in tears which really really sucked!  Thankfully I had a few pain pills in my purse that I was able to take right after before the pain set in really badly!

Mom was getting concerned with my shoulder so we tried to make a sling for it that didn't work that well so my mom decided to call my brother as he had shoulder surgery about two months ago (long long story!).  He brought the sling over and said I could have it as he didn't need it anymore.  He asked me if I dislocated it and I kinda laughed and said no, I do that every couple of days.  He had a look of pure shock on his face and I think it kinda is starting to really realize just how bad the EDS can be.  I have used the sling a few times just to make it so I can't use my right arm.  It is very hard not to as my bad wrist is my left one so I can do most things strictly right handed but not visa versa.  The sling also takes a bit of the pressure off of the shoulder but I still can't just 'rest' my shoulder.  I can not 'release' the muscles to rest it.  I can't do that with any of my joints anymore as I have to always have control or they will go out.  Strange thing is that my shoulder hurts the most when I am lying down (which I have read is indicative of a slap tear but I dont know). 

The nurse at my GP's office told us to call on tuesday to see if the xrays showed anything (most likely not, they generally dont show up on xrays) and to go from there.  Unfortantly my GP is out of the office for two weeks so not sure what the next step will be. Just hoping I dont have to go to the ER to get a referal to an OS quicker as I despise two out of the five or six OS's in this town.  One of which just told me a month ago that the only thing wrong was tendonitis!