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Old 05-25-2006, 10:47 PM   #1
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Aargh! The Specialist doesn't understand!

I've got quite a bit of pain due to some sort of bone disease and have been searching for a diagnoses for the past 26 or so years (I'm 28, but every Dr called me 'normal' or 'very close to normal' when I was born, even when my mom knew something was definitely not normal, so she started her quest when I was about 2). Most doctors simply said I either had Arthrogryposis or MED (Multiple Epiphyseal Displasia), but had any actually checked them out, they would have realized that I don't fit into either one.

On Tuesday I saw an Arthrogryposis specialist. The guy has written articles and books on the subject and has many years of research. Well, he told me that I do not have Arthrogryposis. So, thats whatever it is

What's making me angry is that he asked what I do to keep myself pain free and nimble, so I ran him thru all of my routines and told him about all of my meds, including Morphine. He did not like it when I said Morphine and then proceded to lecture me about how he will never use it because "the negatives always outweigh the positives". What are his negatives? Dependence and addiction. He actually told me that both are the same thing and then condecendingly asked me what would happen if I decided to stop taking it today. Well, obviously I would go into withdrawl and then he said that I was going to "wake up one day and BOOM, I'm addicted". He then urged me to stop taking it because I'm playing with a loaded weapon and my Dr probably doesn't know what he's doing. I don't think he realises that my Dr is a PM specialist. That's what she does. He also told me that most Arthrogrypotics don't have a lot of pain in any of their afflicted areas, so there was no reason for Morphine. Eh? He told me that I DON'T HAVE ARTHROGRYPOSIS!!! How the heck would he know my pain levels? Factuallly, I happen to have a lot of pain in most of my joints, including my back. I think he may be off his rocker because he told me that I don't have scoliosis, but I do have a forward lean on my upper spine. Hello? If he would have taken one look at all the X-Rays and reports I brought with me, he would have seen a very severe bend with a compensatory bend above it. Just cause I'm not leaning to one side doesn't mean, sigh... I have never taken any of my pain meds to get high in my entire life, nor has the idea crossed my mind. The fact that I'm now on 120mg (Avinza) daily also angered him. He wanted to know why I'm on "so much". My answer was that I went from 30 to 60, then to 90 within a few months because I'm opiod tolerant, and this past month I was switched to 120mg after having been on the 90mg for 3.5 years. "That's much too fast"! Funny, my Dr agreed to up my dose to 120mg because I was on the 90 for a very long time. I guess he doesn't realize that tolerance (even dependence) can form in any number of medications too, even his precious Motrin (which I do supplement my meds with from time to time). I think a lot of his attitude was based on "you don't look like you're in pain, so why Morphine". Good thing I didn't tell him I take Percocet for BT!

Anyway, I left feeling so angry. His demeanor changed after he found out I was on Morphine and he didn't want to do anything but lecture me on how bad it is. Sorry for the rant and jarbled-ness (or lack of order), but I had to vent - most people I hang out with have no idea what living with pain is like.

 
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Old 05-26-2006, 05:35 AM   #2
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Re: Aargh! The Specialist doesn't understand!

Most doctors spend less then 5 hours in school learning about pain.You just ran into the teacher lol.It's ca shame really,if these guys ever had to go through the pain we do,you know what I mean.Anyway I hope you find the answers you've been searching for.Hang in there.....Dave

 
Old 05-26-2006, 05:48 AM   #3
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Re: Aargh! The Specialist doesn't understand!

unfortunetly,this IS probably the most typical type of response from alot of so called "specialists" that we are sent to over time.even my neurosurgeon who did my spinal cord surgery and that time was suffering from just the horrid pain of central pain syndrome told me that narcotics will cause me some "psycotic" types of problems in the long run if i chose to actually treat my ongoing pain with them.so his great idea was to want to actually place a spinal cord stimulator inside my spine,and this was before actually trying any sort of actual pain clinic type of setting.wow.

I was also referred to a rhuemy doc for eval of my RSD knee and this guy just did not ever at all Rx any types of narcotics for any of his patients,no matter what was actually causing the pain.really scarey stuff.so nothing really suprises me anymore.

i am wondering just what exact types of symptoms you are having and where the source of your pain actually is.could you please give some details??thanks,marcia


by the way,run run run away from this doc as fast as your little legs will carry you!!what a flippin idiot.
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9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 05-26-2006, 08:49 AM   #4
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Re: Aargh! The Specialist doesn't understand!

Sounds like you ran into one prize winning egotistical self rightous doctor who doesn't know the difference between dependance and addiction. It's those types of people who do not suffer in pain day in and day out that just don't grasp it. But you can bet that should they walk a month or two in our shoes or any member of their family, they'd be getting the appropriate treatment faster than you could blink an eye. I too would run and run as fast as I could. Obviously since you do not have this disorder he knows so much about he's pretty useless to you.

I too am curious of your symptoms. Have you ever been to a geneticist and been tested for any of the various collagen disorders which cause severe joint pain and scoliosis? Ehlers Danlos Syndrome, Sorjegens (sp) Syndrome and one other which the name escapes me pretty common and very underdiagnosed. I went for some 30 years before doctors realized I had EDS. On the other hand if your problem is actual bone deformity none would apply as they all apply to the actual joints and of course skin. Collagen makes up some 80% of the body and affects all joints, organs and tissue.

 
Old 05-26-2006, 09:07 PM   #5
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Re: Aargh! The Specialist doesn't understand!

Well, I've seen quite a few doctors (maybe 20 to 30 in 5 different states) and a few geneticists. None have actually said anything much or they just reffered me to another Dr, seeing them was another repeat. The better ones would compile all of my problems and send that to specialists and attempt to help. My PM Dr really goes above and beyond our PM goals to help figure out what I might have and what could possibly be done to make me more comfortable.

To start, there is something wrong with all of my bones and joints. They don't connect to eachother the way they should and are very thin. Here's an overview of what's wrong:

My toes were in a hammertoe configuration (and were surgically straightened 5 toes at a time in 2001 and 2002). Both of my feet have vertical tali (the specialist seemed to concentrate on the tali since it was all he really knew about) with the right being much more severe than the left. My left ankle has a huge piece (I keep forgetting the name) of nectrotic bone that tends to get painful and swell up from time to time. When the left is swollen the right usually mirrors it, but w/out pain. That has been looked at as RSD, but I have never injured myself unless "the strain of walking" is sufficient to cause that. I don't have other RSD symptoms besides the swelling and pain. I do have osteoarthritis & severe osteoperosis in both feet too. When I walk, only my talus touches the ground - the rest of the foot doesn't unless I wear my special orthotics or Birkenstocks - I'm so glad I found them, otherwise I would destroy a normal pair of shoes in a month. I bought my first pair of Birkies in 1998 and they're still going strong

Next up would be my knees - both have osteoarthritis and don't bend or straighten all the way. My right knee is the worse of the pair. On my left knee I have what looks like bursitis cause it is very swollen and is much larger than my knee overall (picture a softball sized blob latched into my knee), but the swollen area does not hurt. I have never been one to kneel, cause I really can't and noticed the swelling one day in August of 2003 and it has been there ever since. No one wants to try draining it. Both knees crack and pop with the slightest of movements and tend to hurt when I walk or when I bend them. Fortunately, both are still osteopenic. My right knee also has a piece of cartilage stuck under my kneecap.

My hips are really bad. They have a very limited range of movement, like everything else and are severely osteoarthritic with severe osteoperosis (I'll add my Dexa scores in an update - I can't remember right now). When I walk I tend to lean forward at the hip. I avoid running and really need to watch myself when excercising so that I don't pull muscles in my hips and lower back and thighs. I constantly have fluid in my hip sockets further limiting my movement and causing pain. Lately my right hip has been extremely painful and stiff. It seems like it will stiffen up when it's expected, like if I don't move it around or when I've been sleeping in the same positon for too long, but it also hurts and stiffens when I'm active or if I'm working out and I have to stop immediately and massage my hip for 5-10 minutes for it to clear up.

My back is where a lot of problems reside, but this is the main area where no one has been able to figure out why or what is causing it. My entire spinal cord is fused naturally. There's the scoliosis with a compensatory curve in the lumbar section leading up to my C spine, where the natural fusion somehow unfused and 2 disks slipped. I had that surgically re-fused in 2002 because my Neurosurgeon was sure that they were pressing on my spinal cord and was concerned about my overall lack of spinal fluid. I don't know if the fusion did anything to my spinal fluid, but I'm do for another series of full body MRI's in August, so I will find out then. Luckily, against the odds (they were not in my favor), the fusion was a success and it took, reducing most of my neck pain - I had actually gone to the surgeon because of the horrendus pain. Now I do get a lot of pain in my neck that seems to radiate into my left shoulder blade and then into the base of my skull, but it's not as bad as it was pre-fusion. Percocet tends to make it worse and makes me nauseated, so I cannot take it when my neck hurts. My neck also does not sit on the top of my spine the right way - it leans down-forward. My spine and neck are not curved the way they should be - they're almost straight, aside from the scoliosis. I remember when I worked at a health center and got to take a test X-Ray on the new machine. All of the doctors gathered around to see my neck! I can't turn to the right very far, but I can turn to the left better now than I could pre-fusion. Moving my head to either side has to be done slowly or else my neck will pop or crack and that tends to make it hurt a lot. It's one of the reasons why I don't drive. I also wear a back brace, but it causes my neck to hurt when my spine is pushed into a "proper" alignment, so I have to limit how often I use it.

In the same section, my shoulders radiate inward and my arms are very limited in movement. I can't straighten my elbows all the way, nor can I bend them in all the way. It tends to feel like a bone in my right elbow "came loose" and is getting stuck inside it somewhere and is the cause of the pain and me not being able to bend it. X-Rays show nothing like that, but they do show that my bones don't seem to connect the right way. Epephyseal displasia of some sort? My right elbow also tends to swell and get painful from time to time, just like my ankle, but there is no nectrotic bone. My wrists reveal that they can't bend backwards, only forwards, very deeply forwards, but not all the way. My fingers have camptodactyly caused by irregularly shaped bones. They were surgically altered in 99' and 2000' one set at a time, although they're not straight nor are they exactly moveable. I've got very limited movement in them, save for my left thumb - it's the only one that looks 98% normal! Half of them are in very bad positions while the other half are in very good positions, but they're spread throughout both hands. I type with three fingers. My left thumb popped out of its socket when I was 12 or so. It was never corrected either because most doctors didn't feel it was worth it or were afraid to mess with it unless it needed to be messed with.

My dental health is good overall, but my teeth roots are very short. I didn't have braces because everyone was afraid they would pull my teeth out. I see my dentist for a teeth cleaning session every 3-4 months just to be on the safe side.

Aside from the bone disease is asthma. My chest is very small, so my lung capacity is not that good. I tend to rely on an inhaler constantly, but am lucky that I only get attacks very rarely. When I do get them, they're usually very severe, but tend to happen every 10 years. My last one was in 2004 and I ended up staying in the hospital for 2 weeks cause of Pneumonia.

I've also been tested for Osteogenesis Imperfecta, but do not have it. I noted my dislocated thumb because it didn't just 'pop out', but I was playing catch with some friends and the ball hit my thumb, knocking it out of place. Something similar happened to my little sister and she ended up breaking her hand (and her arm and forearm). I've never broken a bone, even after some rough falls from my bike when I was younger. Once I dropped a 3 pound can onto my foot and it hit my little toe. We were sure I broke it, but it turned out that it was only bruised, which seems to be odd because everyone was always afraid that minor trauma would break my very thin bones. I don't have any skin problems either, nor do I have dry eyes or a dry mouth (other than as an occasional side effect of Morphine). My own research has opened a few different diseases, but unless I can pick and choose from certain symptoms, they rarely fit as a whole.

I don't have any muscle issues besides pulling them often. They're not deteriorating or withering away. In my heart, my pericardium is enlarged (maybe a bit swollen) and has too much fluid. I have assorted chest pains that may or may not be heart related - the most common pain feels like someone is pulling my ribs on my right ribcage out and then is pushing them back in again.

I hope I didn't leave anything out and I hope I was able to answer your questions. If not I'll try to clarify some more. I'm not wholly sure on a lot of it myself. Most doctors tend to look me in the eye and apologise, then say "I don't know".

Last edited by Fibbles; 05-26-2006 at 09:30 PM.

 
Old 05-27-2006, 07:25 AM   #6
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Re: Aargh! The Specialist doesn't understand!

Wow I'm not sure what to think. I went through a similiar situation prior to being diagnosed with Ehlers Danlos Sydrome. I saw a slew of doctors who didn't know why I had severe OA at a young age and in joints that had never been injured before or operated on. It wasn't until I met a anethesiologist who lived in New Zealand online it was figured out. I guess what I'm saying is keep doing what you are doing by posting to boards and communicating with as many folks as you can and there's a chance you will be able to find an answer.

Have you dropped by the bone disorders board here? Perhaps someone there would be better versed in some of the various disorders that we here may not be.

I am surprised that the geneticists didn't do any testing at least for the various collagen disorders which would definately impact your joints, ligaments etc. They aren't difficult tests to do, mostly just a skin biopsy to at least rule out different syndromes.

Definatley don't give up, someone is bound to have the answer you seek. I know how troubling it is to not know your diagnosis. Knowing what is wrong doesn't stop the pain but does bring a huge relief.

In regards to your meds making you nauseas, talk to your doctor about phenergan or compazine, both work well to treat the nausea so that at least you can take it when you are having your severe pains rather than go without.

Barbie

 
Old 05-28-2006, 11:06 AM   #7
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Re: Aargh! The Specialist doesn't understand!

Thanks!

I visit the bone disorders section a lot - in my browser (Firefox) I usually have this forum tabbed, one for here, one for the bone section and the other for asthma Some of the usual checking routines are looking up any disease that I don't know when/if it's mentioned, especially if it has something similar.

I've got compazine, but haven't been taking it much. Around this time last year, I started feeling anxious and nervous seemingly 'out of nowhere'. I was inside an elevator and I freaked out - starting sweating profusely, got dizzy and didn't know what to do. After that I had a bunch of tests done, including an ultrasound of my Carotid artery. Without seeing anything wrong, my Dr gave the compazine. A few months later the anxiety attacks suddenly stopped.

 
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