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.

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)."

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 :(

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.