Journey to Becoming a Zebra - The Facts

This list covers everything that has gone on since the day I got my Ehlers Danlos Syndrome diagnosed.  I am probably missing a bunch of things but these are what I have been able to remember just by memory.

Doctors:

• 6 Orthopedic Surgeons
• 5 Physiotherapists
• 3 Rheumatologists
• 3 Dentists (2 were Oral Surgeons)
• 2 Pain Clinics
• 2 Cardiologists (and one is also my internist and gastroenterologist)
• 2 Neurologists
• 1 Allergist
• 1 Dermatologist
• 1 Podiatrist
• 1 Geneticist

Procedures:

• 8 Echocardigrams
• 8 MRI's (that I have remembered)
• 5 Cortisone Injections (1 right knee, 4 right shoulder)
• 4 Holter Monitors
• 4 Dental Surgeries (1 widsom tooth extraction, 1 molar extraction & 2 fillings)
• 3 Bone Scans
• 3 Dexa Scans
• 1 CT Scan (right knee)
• 1 Joint Ultrasounds (right knee)
• Numerous - > X-Rays, EKG's and Bloodwork

Medications Tried:

• 8 Breakthrough Pain
• 5 NSAIDS
• 4 Off Label Uses
• 3 Long Acting
• 3 Anti-Depressants
• 3 Beta Blockers
• 3 Topical Pain Killers
• 2 Migraine Prevention
• 1 Stomach
• 1 Osteoporosis
• Numerous -> Vitamins and OTC (Over The Counter) Medications
• Other non- EDS related medications (anti-biotics etc)

Joint Problems:

• Dislocations - Knees (both), Wrists (both), Thumbs (both), Elbows (right) & Shoulder (right)
• Tendonitis - Ankle (left), Knees (both), Wrists (both) & Shoulders (right)
• Bursitits - Ankle (left) & Shoulder (right)
• Osteoarthritis - Knee (right) & Shoulder (right) (confirmed)
• Carpel Tunnel - Both Wrists
• Degenerations - Shoulder, Neck & Back
• Bone Spur - Neck
• Disc Herniation - C5-ish
• Stenosis - Cervical Region
• Reverse Lordis - Lumbar Region
• Ganglion Cyst - Ankle (left)

Treatments:

• Physio - Ankle (left), Knees (both, pre & post-op), Wrists (both) & All Body Assesment
• Bracing - Ankle (left), Knees (right), Wrists (both) & Thumb (both)
• Ultrasound Therapy - Same as Physio
• TENS Therapy - Same as Physio
• Contrast Baths - Wrists (both) & Thumbs (both)
• Accupuncture - Knee (right)
• Accupressure
• Massage Therapy
• Hydrotherapy
• Orthotics

'New' Conditions:

• Chronic Pain
• Chronic Fatigue Syndrome
• Fibromyalgia
• Depression
• Anemia - Iron & B12
• Severe Vitamin D Deficiency
• Sinus Tachycardia / Possible Mitral Valve Prolapse
• Local Anesthetic Allergy (and they do not work)
• Sedation Does Not Take
• Tylenol & Asprine Sensativity / Latex Sensativity
• Severe Chronic Headaches
• Fallen Arches / Flat Foot
• Autonomic Dysfunction / POTS / Dysautonomia
• Osteopenia / Osteoporosis
• Probable Autoimmune Disorder
• Gastroparesis / Gastritis / GERD & Bile Reflux
• Osteoarthritis

Journey to Becoming a Zebra - Part Three

This is going to be a very short entry (for once) because in reality most of the things that have happened since are in the blog or have had the results of them in the blog (or emails, private messages, facebook etc).  So basicaly I am just going to write down what happened immediately after the appointment and then what the next 6 months held 'life' wise and not medically wise.  To do medically wise I think it will be easiest to just make a post of the 'facts' that have been dealt with since the diagnosis.

The first days:
Thankfully I have amazing parents.  When I got the appointment to see the geneticist my dad drove 2.5 hours from 'hometown' to 'university-town' and then the day after we both drove to 'dr-town' for the appointment (mom couldn't come becasue she had to work and look after K), we had the appointment and then decided that I was going to go home for a few days while we figured it all out.  I was 99.9% sure that I was getting the EDS diagnosis but it still was a big adjustment.  I needed a few days before getting back to my real life. 

Life events:
I went back to 'university-town' a few days later and continued to work my ass of and am proud of the fact that I was able to get my Honours Bachelor of Science in Computer Science as well as a minor in Math.  I was (and am) so very happy that I was able to acheive that before everything started getting so bad.  And that challenging and hard of a degree probably actually attributed to the reason I went down hill so fast that last year. I got a summer job but I was unable to keep it as it was a lot of typing on very old computers (harder keys to push and a different layout to the one I was used to) and no chances of small breaks.  I was going to go back for one more year (as I had surgery scheduled for that november - which never happened but I won't go into that) but had my wisdom teeth out on the 3rd of September and go back to school on the 7th, I wasn't recovered, we were dealing with a lot of medications trying to do the pain management part and I ended up with a bad infection following the wisdom teeth extraction so by mid-october I knew that I just could no long do the school thing (plus the fact that most of my friends were gone by then so I was kinda alone).  I moved back into my parents house permanantly and have been lucky enough that my parents are perfectly happy with our strange little family dynamic (my parents, myself and my grandson) and it was a mutually pleasing aragement as I was there for my nephew.

Journey to Becoming a Zebra - Part Two

So in early August of 2000 I went in and let Dr. S (Orthapedic Surgeon) perform a Lateral Release on my right knee.  He actually proposed that he do both knees at the same time because they would both eventually need to be done.  I refused that because of, well common sense really.  It was basically decided that I would get my right knee done then as it was the worst one and then go back the next summer and have the left knee done.

The actually surgery went okay and it was expected that I would make a full recovery and get rid of most of the tracking issues.  He had to do a clean up of under the knee cap and said that my knee was very 'soft' (Chondromalasia Patella) and could be dislocated easily.  I was on bed rest for a while but was up on crutches pretty quickly and didn't have to wear any type of brace.  I was in physiotherapy immediatly after and got my strength and ROM back almost instantly.  Only down side - No pain relief at all.  Over the next year I would drive back home (2.5 hours from school) to see the doctor only to have him tell me "once you can straight leg lift 10lbs you'll be fine", then "once you can lift 15lbs" etc and kept upping that by 5lbs each time (which later in retrospect a new physiotherapist was disgusted at that as that type of weight could have seriously affected my hip).  I was also told many times that I had 'ugly' scars and that I should get a plastic surgeon to sew me up 'next time'.

The last appointment I went to of that surgeon was when he suggested I drive the 2.5 hours home, during final exams, have a cortisone shot in my knee then drive the 2.5 hours back to school that day.  I reluctantly agreed and when I went to the appointment he looked at me like I had two heads and said that he would never give a cortisone shot to someone so young (19 at the time).  I was livid!  I later got all the reports from him and apparetnly every appointment was my last, as he concluded at the end of every report "I have discharged her from my care".

After this I went to the specialist sport medicine center in the closest teaching hospital near by (which happened to be half way between were my parents lived and where I was going to school).  The doctor (Dr. F) was amazing and right away realized that the lateral release was the worst thing that could have been done because my ligaments were too lax and not too tight.  He told us that instead of the surgery stopping my knee from subluxing to the lateral side, it was now subluxing both laterally AND medially.  He thought he knew what would work but wanted to go in for a scope first to look around and decide which to do.  I had the scope done on March 22nd, 2002 and went in for a full repair of the lateral release (later retinacular repair). I did pretty well with that one.  The only thing that didn't go well is that I had to wear the immobalizer brace longer than expected because I was actully getting my range of motion back too quickly.  Things went well until I aggrevated the knee and ended up with tendonitis and bursitis in the joint that I had to go back to Dr. F to find out what I could do then.  This proved to be a great thing!

I went in and of course, because it was a teaching hospital, I saw a few different level's of students before I actually saw Dr. F.  Well I was being examined the fellow noticed that I had hypermobile knees and asked me to do a few 'tricks'.  Then when Dr. F came into the room, the fellow said that he thought I might have a connective tissue disorder, but Dr. F said that no I probably didn't because I was so short.  We finished the appointment and we decided we would try a cortisone shot (Couldn't get it then because I had drove myself to the appointment so would have to drive an hour back at that point).  That litle thought stuck right in my head though. 

I got home and started looking into it and it was just so eye-opening.  All those things that we blamed on the prematurity, all those things that we just never had a clue as to why they happened - they finally all fit into the description of EDS.  I became almost obsessed about it and researching all I could about it.  In retrospect my mom thought I was just trying to make something fit to explain things and that it was so rare and there was no family history it just didn't make sense.  I didn't drop it though and did some researching and found about a geneticist that was very knowledgeable about EDS about an hour and a half away from my univserity town.  I went in and basically told my GP to refer me to her (Dr. M) and he did.  Dr. M's office contacted me with things that I had to do (family history, family tree etc) and said that they would contact me in a little to go over these things.  Generally you call and talk to a student and then that student will go and talk with Dr M, and if Dr. M thought she needed to see you, someone would call and set up an appointment for you.  Well I skipped steps.  I did the phone interview and given an appointment date a few weeks later.

Obviously, I saw this Dr and she told me that I basicaly had a textbook case of EDS, except for the fact that it didn't seem to be in my family.  My dad had some hypermobility and a few joint problems but also a lot of 'anti-EDS' situations.  His issues could also have been because he had polio as a child.  We found out at this appointment that I was premature because I had EDS, that I would need to get into a pain clinic, get into a good doctor to monitor my condition and that I would need to research my condition a lot because most doctors wouldn't have a clue as to how to treat me.

At this point we started the trial - and - error part of the post - EDS diagnosis that we all go through.  But it is late here, and I have typed up a lot so there will be a part three to all this.

Journey to Becoming a Zebra - Part One

As this is my 100th post I deceided to do something special for the post.  I realized that I never wrote about how I was diagnosed.  It was a bit of a struggle but not as bad as some people.  I am going to split this into three parts - "Before EDS", "Getting the EDS Diagnosis" and "Post Diagnosis".

Before EDS

It all started on a late winter night, literally.  I was due to be born on March 17th, however I apparently could not wait and I was born at 29 weeks on December 27th (which is kinda creepy as the family has a strong 27th theme with birthdays - will post that another time).  My dad's side of the family had left earlier in the day to go home as they were down to our place that Christmas.  Mom ended up having spotting and then her water broke. My parents were very worried as they never thought that they would be able to have children (and adopted my brother 9 years previous) and mom had suffered a miscarrige.  My parents got their friend (close friend, my brother and their son grew up together) to come and stay with my brother and rushed to the hospital.  We live about an hour from the nearest Children's hospital with a NICU but one my mom got to our hospital the doctor's realized that even though they wished they could send my mom by ambulance to the Children's hospital, they knew that there just wasn't going to be enough time to do so safely and I would have been born in the back of the ambulance which was even more risky.  The doctor's instantly took my mom to have a c-section and a special neo-natal ambulance with incubator and all the needed tools was dispatched to our hospital to wait for me.  I was born at 11:46pm and weighed only 2 lbs 8 oz.  The doctors were doubtfull that I would survive and my mom was never even allowed to really see me before the sent me off to the children's hospital.  My dad was distraught (and had only been sober for a year and a half) and did not know what to do but ended up staying with my mom (and brother) to wait for news from the other hospital.  My nan and poppa on my dad's side found out what happened when they called to tell my parents that they got home safely and when they heard the news they immediatly packed up and came back down.  That was it for that night.

Over the next week or so my dad finally got down to see me and was able to hold my entire body just in his hand.  Of course living an hour away and having a son at home, and my mom being in the hospital still (recovering from the c-section and shock) they had to rely a lot on the nurses in the NICU for updates.  It scared them when they would call down and the nurse would tell them that I only had 6 apnea attacks that night, dad would ask what an apnea attack was and the nurse non-chalantly told him that it meant I had stopped breathing!  It also took a good few days before I had a name and the NICU nurses told my parents that they needed a name so they could talk to me.  I dropped down to under 2lbs that first week but amazingly survived with very very few health problems.  The doctors were all shocked that at 29 weeks I was born with fingernails and hair.  They did many many tests but could never find out why I was premature.  I was moved to our hometown hospital after about a month and finally released home on February 5th to very scared parents lol.  More and more tests were done with still no reason for me being a micro-preemie.  My parents had thought about having another child soon after me so I would have someone close in age to me since there was such a age difference between my brother and I.  The doctors told them that it was definitly not advisable as they had no clue why I was so early and couldn't do anything to prevent it happening again, which was also likely.

As a toddler, my parents had to stop me from walking.  I had to get special shoes with a lot of support and was put in a 'jolly jumper' to help build up muscle.  Doctor's were still confused over me as even being so early, I was hitting all of my developement milestones on time (preemie's should hit their milestones according to their due date, not their birthdate - at least that was done 30 years ago).  Once I was getting mobile the doctor's sent me to the 'rotary center'.  It was a place in town that dealt with all types of disabilities and developement problems (ironicly my nephew ened up at the same center 20 years later).  My dad was very hesitant about it as he was very very protective of me.  As fate would have it though the first appointment they took me to, the receptionist was a long-time friend that dad didn't even know worked there who assured my dad that I was in the best hands possible.  Obviously I do not remember any of this but I stayed with the center for a significant time (walking through to kindergarten).  I was done there when they did pre-school testing to determine if I was 'ready' to start school (because of my birthdate I could start at 4 or 5), they deemed it was better for me to go to school early as I was intellectually ready but socially immature - which would just get worse not being in school.

I had the normal childhood issues growing up but times ten.  I had my tonsils and adenoids out, tubes in my ears (twice), a concussion and bilateral pneumonia so I was in the hospital quite a bit when I was younger, like up until the age of 8.  I did have chronic sinus infection so was on a pile of antibiotics and did miss quite a bit of school all the way through high school (and still have at least two infections during the colder months). It just seemed like I had a weakened immune system, which the doctors always just associated with the prematurity. I had to be formula feed as a baby because I was lactose intolerant so that was used as a reason too.  One thing that was quite clear though was that I was a massive klutz!  Sports were just torture for me as I was always twisting my ankles or falling over.  The only 'sport' I did was swimming lessons, and that was mainly because we had a swimming pool in the backyard and my parents wanted to make sure that I could swim and handle myself in water.

Things did start to change in high school, which is typical for EDSers as hormone changes really affect us.  I remember being 'diagnosed' with tendonitis in my right hand in grade 9, sent to physio for my knee in grade 9 and just more minor injuries.  I also started right back up with the sinus infections and would get run down really easy.  In my school not all subjects had mandatory finals.  If your mark was below a certain grade, or if you missed 10 or more classes a term you would have to write the final.  I had to write every final that was given in high school.  I also suffered with really bad acne all through school and in grade 12 or OAC (Ontario Academic Credit - grade 13 if you wanted to go to university, college and university is quite different in Canada unlike the US) was re-diagnsed with asthma and chronic sinusitis. 

However it was in my last year that things started getting iffy.  I was suffering with more and more joint pain (wrists, knees and one ankle) and more infections.  First semester of my last year I was sent back to the physiotherapist for treatment on my right knee.  And after there was no improvement (and slightly making it worse) I was refered to an Orthatpedic Surgeon.  I was able to get in to see him near the end of the year and after a very breif appointment he decided that he knew what the problem was and that surgery would fix it.  So I was set up for a surgery date of early August.  This was scarey as I was due to start university 2.5 hours away at the beginning of September.  It also ended up being the worst decision of my life!

What happened after surgery was ....... Part Two ;)

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.

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.

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.