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.