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.
Tuesday, July 30, 2013
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.
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:
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 :)
- 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 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.
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.
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)."
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 :(
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 :(
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