Tuesday, February 28, 2012

Good doctors appointment!

Last week I had a very surprising doctor's appointment.  Everything went well, we found something that when corrected most likely will make a great improvement, and I was able to check almost everything off my list (and the one not crossed off was addressed).  So here is what went on:

1) Rheumy I hated from a few months ago had never sent anything at all regarding our appointment.  Probably because he has disappeared.  Literally disappeared! The College of Physicans and Surgeons has no clue where he is, his website has been taken down that the dr who shared a building with him has no clue where he has gone and rumours are he had no clue he was even leaving town.  The local newspaper even did a full story on it and complaints are being lodged against him.  When I told my GP (Dr. B) what he had told me about my weight and acrobatic activities he just shock his head and called him an idiot.  We have never ever heard my dr bad mouth another one, and we have been going to him for 35+ years!!

2) About the scope and the results from that.  Among what was foun was non-ulcer dyspepsia (upset stomach or indigestion not from an ulcer); Atypical dysphagia (difficulty swallowing for an unknown reason); gastritis (inflamation of the stomach lining); no strictures were found (nothing physical causing the swallowing problems);  acid and bile reflux (we knew of the acid before hand but not the bile); delayed gastric emptying (gasteroparesis - just as the name says, food stays in my stomach too long) and that she believes that my swallowing problems are from a combination of autonomic dysfunction flares coupled with oesophegus spasms.  Good news was nothing was biopsied, no 'bad germs' were found and basically nothing bad like tumours or bleeding.  She suggests that I try the medication called domperidone in the report.  Dr B didn't think that it would make any difference but when I looked it up later at home I realize that she is wanting to try it because of the delayed gastric emptying and not the GERD or swallowing that I assume he assumed.  I did call her office to make a follow-up but because I go for all my annual cardiac testing in april and have a follow-up in may, the office said she prefers to wait until all the tests are in before a follow-up is made.  I tried to tell them that these tests were for my stomach and the other tests are for my heart and totally unrelated so the office told me that they would talk to my dr and see if she wanted me in.  Still waiting for that.

3) I needed my pain meds changed which was actually pretty easy.  He was happy to get me off of the breakthrough med that I had been on as he didn't like it.  He even asked who perscribed it last and I had to  tell him that he did.  I dont think he was completely convinced that rotating the meds helps so I don't build tolerance, but he did change them around for me.

4) Obviously even if I did like the last rheumy, he is no long around to go to.  Dr. B says he has heard through the hospital that a new rheumy will be in town within the next few months so he wants me to just wait for now and get into this new doctor.  As things are pretty stable (except for one joint - more later) and Dr. B is willing to handle my medications, I am okay with this.

5) My shoulder has been really bothering me lately.  If my old rheumy was still around he would have done a cortisone shot months ago!  When I asked Dr. B about this he asked where I had had the injections (two in the AC joint, one for tendonitis, one for bursitis) but says he does not want me to have any more cortisone in ANY joint becasue of the osteoporosis.  He feels that the risk of more damage is too high to chance a few months of relief.  Because of this he is sending me to an orthapedic surgeon in town.  I dont have a appointment date but I will keep this blog updated.

6) Finally the last item was the bloodwork I had done the week before.  All the autoimmune came back okay this time so he is thinking that it whatever I have is dormant right now and that when I get into the rheumy he wants this investigated further.  The C-reactive protein is still quite elevated but we do know that lately with my joints being more painful that there is some more inflamation going on.  Again, it's something to keep an eye on, but nothing serious at this point.  However, there was one test that completely scared him, it actually scared my doctor!!  My vitamin D levels are very worringly low.  I am very deficient in Vitamin D for some reason.  This, coupled with the osteoporosis are pretty dangerous.  However, he has never seen levels this low so itsn't too sure what to do to treat it.  He just had me get some vitamin d drops and take at least 3 times the daily dose.  I am hopeful that this is the reason for the problems I have been having in my legs.  They have been so painful and weak.  I avoid stairs at all costs and have been having a lot of restless leg symptoms again.  I have most of the symptoms so am keeping my fingers crossed that when we get the D levels back to normal, my legs wont be so bad in certain ways.  After the appointment I asked the secretary for copies of the report (scope) and bloodwork and when she looked at it she was shocked too and looked at me and made a note that it was a good thing I had thought to test it as no doctor has ever suggested it tested.

7) Just as we were about to leave mom mentions that she thought we actually had something to show him this time as my wrist had been sliding in and out all morning.  Then we were absolutly shocked!!! He says "I dont need to see that, we know that she dislocates as that is what goes along with the EDS, no one is doubting that"!!  Well, a few years ago, HE did actually doubt that.  Shows the ground we have gained with him and that he is finally starting to fully get it!

The only thing that we did not get discussed was a medic alert bracelet.  We did mention the issue I had with the sedatives and my past issues with local anesthetics so they do know about it, we just didnt ask about whether I should get a medic alert bracelet.  However both my parents feel that it would definitly be a good idea to have, not only for that but for many other issues.  I have asked around and looked into it and now all I have to do is figure out which bracelet I want.

Tuesday, February 21, 2012

Avoiding disaster! (and the normal blog update)

First - I have changed my mind and decided that my 100th post is actually going to be my journey to eds-ville as I realized that since I have moved to this blog (did post before on a different blog site) I haven't really delved into anything in my past.  I will soon put up links though from my followers so if you haven't replied or emailed please do so if you want your link posted.  If you are a follower who has a blog, I don't feel comfortable just automatically putting up your link and would like to have your permission before I link you.  I know that seems kind of odd as you can just click on a persons name, but that is how I feel more cofortable in doing things (it's the computer programmer in me lol).

Things have been pretty good around here for the most part.  No big issues or anything like that which is nice for a change.  Also it seems like we avoided what could have been a MAJOR problem!  My brother's fiance's daughter (I guess my step-neice? call her 'J') is sick. My nephew was at their house for about 30 minutes last tuesday and also had a visitation at their place on sunday for about 4 hours.  Thankfully, for some reason, J was not at home while K was there on sunday.  I say thankfully because we got a frantic call sunday night saying that they had just got home from the ER with J and she was diagnosed with........ Scarlet Fever!!!  Thankfully she isn't too sick and they gave her antibiotics and had her fever gone by the time they left.  Apparently it is not a serious disease anymore and is in the same range as strep throat which we found out is going around our community (my family and my brother's family live in the same small town of about 7000 people, but K and J go to different schools). As we read that it can take between 12 - 72 hours for signs to start showing and since K was home from school on friday with a sore thorat and no rash or fever has appeared on K (or me!) we seem to have avoided it completely! No visits will be done though until she is completly off of all antibiotics as my immune system is so low and I can get real sick, they know that we have to take more precautions than most (like no visits here during any chicken pox outbreaks in town).

Medically I have been having a lot of problems with two of my joints.  My right shoulder is not feeling stable at all and in quite a bit of pain, but nothing compared to my right hip.  I can not sit or lay down in a comfortable position.  Late at night when I can't sleep because of it, it is bad enough that I get tears in my eyes.  I have been doing breakthrough meds a lot more regularly that normal but thankfully have a GP appointment on thursday so I can get my medications switched over as it seems I am reaching my tolerance levels (I usually try not to change long-acting and breakthrough meds at the same time but I don't think it can be helped this time).  Unfortnatly, as he is just my GP and I have no rheumy or joint doctor, nothing will be done unless I can convince him to do some scans or think about cortisone shots in one (or both) areas.

I did get bloodwork taken last week which was absolutely shocking.  For the first time in many many years it only took one nurse, one stick, in my left elbow (normally only hands work) and no digging!  They know me there and groaned when they saw how many vials they would need (did a complete autoimmune work up, even the tests that insurance doesnt cover!, my iron, B12 and vitamin D levels - total of 6 vials!).  Originally it was only going to be for the autoimmune stuff but on the day I went to the office to ask for the other three tests and since I didn't know I decided to fast that night just in case.  The lady took me into the room, joking away with me and my mom and got me settled in and the vials out.  Now, for those who dont know me generally I have to have a heat pack on my hand before hand, butterfly needle into a vein on my hand between my fingers, two nurses basically using gravity to get the blood out, using a syringe because changing vials tends to make the vein collapse, lots of painful digging and anywhere from 1 - 3 attempts to get the blood.  She has even told me that I am to always tell her to stick to my hand and not attempt the arm because she always feels a good vein but after digging she loses it and ends up going to my hand.  So, like normal she starts feeling around and checks my arm and says she feels a really big vein there.  After a few words exchanged I told her she could try the arm if she felt confident in it, which she did.  She took the needle, stuck it straight in and as I was waiting for the digging to start I hear a noise.  I opened my eyes and see that she wasn't digging because she was changing the vial to fill up # 2!!  She got all six vials done in half the time it usually takes to just get a half full syringe!  With no pain (and no bruising!).  We were all very very shocked at how well it worked and mom joked that we should head right to the tattoo parlor and get a bullseye on it!!

Well I have a doctor's appointment on thursday where we will be discussing a LOT of different topics so I will post this weekend with what goes on.

Monday, February 6, 2012

Rough week

First off, to my two new followers, welcome to my blog and I hope I don't bore you to death lol.  I don't update my blog near as often as I should and hoping to get back into blogging regulary again.  Thanks to all my other followers too!  I am nearing my 100th post and was wondering if each of you could either e-mail me (if you know the email) or comment and tell me how you found the blog, why you are interested in it (do you have eds? family member? just random searchig?) and most importantly the link to your blog if you have it.  I haven't put links along the side bar yet because I can't find out a layout I like for it so going to create a seperate page with info of my followers if you let me.  If you have EDS you know that we need to stick together throughout all that we go through.

Secondly, why I haven't posted since the scope.  Thankfully my dentist appointment got cancelled (wasn't looking foward to someone working with stuff in my mouth after what happened!), sadly though it was because I ended up with an infected throat as well as a build up of blood behind my left ear drum.  I went to my GP first becasue I figured the returning throat pain was more likely to be a cold issue (especially as K missed school that day because he had a sore throat and cold) and didn't want to bother my specialist.  When I called and explained what was going on the receptionist told me to get to the office asap to get it looked at.  My GP ended up giving me a new anti-biotic (Biaxen - I never want to take it again!!!) and we breifly talked.  I asked if I could get a blood requeistion form done up so we could have the results during a follow-up appointment.  He asked why and I told him what the internist and rheumy said about the autoimmune and he just shock his head and said that they were not a fluke and that there was definitly something auto-immune going on, he just does not know what it is.  He wrote up for a lot more tests than last time, any test that could point to autoimmune.  Personally I am thinking it may be one of three - Sjogrens, Rheumatoid Arthritis or Lupus.  I don't know what would actually happen if / when I am diagnosed as the medications for the auto-immune and what I need to take for the EDS don't seem to mesh well.  My GP did write to send copies of the lab work to the rheumy I saw and I just said that I wouldn't be going back to him but he wanted to keep him in the loop.  As I felt like crap and knew that we were going to discuss it at the next appointment I just let it slide.  As of now I have one dose of anti-biotics left and have to go and get the bloodwork done tomorrow becasue my appointment with my GP is for the 13th.  As a side note - I have not contacted my gastro / internist / cardiologist yet regarding the scope. Going to get the reports from her from my GP and go from there.