I filled out my 31 page packet & mailed it in! I will hopefully be put on the waiting list to go see the doctors there that actually know how to help with EDS!
I tried seeing a cardiologist here, they made the appt & called to confirm, when I got there they refused to see me! I have never had that happen to me before!
I am now seeing a:
rheumatologist: Gives me most of my medications, helps with referrals, responds to e-mails, diagnosed my Secondary Raynaud's (he's a keeper)
physiatrist: Ordered my bone scan, said she will be my rehab coordinator, asked me if I had EDS without me even telling her, sent me for PT, diagnosed mt shoulder subluxation & possible labrum tear in my hip, explains everything to me! (definitely a keeper)
neurologist PA: Gave me muscle relaxers after agreeing to do a cervical MRI, that's about all he did, other than that I really, really do not like him & I am not going back (looking for a new one)
Physical therapist: LOVE HER! She takes it slow, knows about EDS & chiari, does mostly ice, massage & isometrics (which has been the best type of exercise for me & I am amazed nobody showed me them before) (another keeper)
Psychiatrist: Gave me meds & listens to me, not much else, except helped with my anxiety (not sure if I will stick with him)
Neuropsychologist: Did testing & diagnosed "mood disorder due to a chronic illness" which Neuro PA interpreted as "anxiety is your entire problem, seek therapy, take magnesium & exercise" because he is an idiot! (only saw her once)
Cardiologist: Did nothing! (looking for yet another one, 2 down so far)
PCP: Says she will help with whatever I need, then sides with cardiologist, claims vertigo is my underlying problem, tells me buy my braces OTC and they will make me worse. (looking for a new pcp with no luck)
Chiropractor: Very helpful, gentle, listens, I just can't afford to see her often :( because insurance doesn't cover it. Helped SO much with my TMJ disorder!
Oral surgeon: May have to go back, I know I have a perforation from a past arthrogram
Orthopedic surgeon: Knowledgeable, but says it's too risky to do knee surgery because of EDS & my allergies. but my MPF is torn & my patella dislocates... this is still my worst joint!
Allergist: I am now on 2 allergy meds, he is not familiar enough with Mast Cell Activation Disorder, did a PF test which was fine, like always! He is very nice, but needs to do some CEs on MCAD since he is also an immunologist as well!
I think that's most of them!
E-bates
Wednesday, October 28, 2015
Non-clinical genetic testing
This is mentioned VERY often on boards & facebook groups & I am getting REALLY tired of all this false hope, misinformation, lack of information, etc...
People that have never even taken a genetic class, but they think they know what they are talking about!!! I even had a geneticist here locally in our group say I was wrong, but her explanation made NO sense!!! I question what she really does!!!
Here is what I know!!! I have researched, I have taken college classes.... I am very interested in the genetic aspect of EDS!!!
COL5A1 is the gene that contains variants responsible for Classical EDS (Collagen type 5)
It contains 11,072 snps
23&me tests 118 of those
COL5A2 is also responsible for Classical EDS
It contains 5,321 snps
23&me does 32 of those
Do you see how much information your missing?????
Sites like livewello allow any user to make a template, just because the snp is in the gene it does not mean it causes EDS!!!
COL3A1 is responsible for Vascular EDS (Collagen type 3)
It contains 1,831 snps
23&me tests 42 snps
Again, you are missing 1,789 snps!!! There are 320+ mutations that cause VEDS!!!
TNXB can cause HEDS, there are 1,377 snps, 23&me does 91 of them
PLOD1 can cause type VI there are 2,059 snps & 23&me does 18 snps
FKBP14 has 587 snps, 23&me does 5 snps
I wish the general public had a chance to have genetic testing, actual clinical genetic testing. I wish people with EDS or suspected EDS or the MANY people misdiagnosed for years could get CLINICAL genetic testing! We are all trying to get whatever information we can so we can help the process of getting a diagnosis. The problem is, with non-clinical tests, the information is just NOT THERE!
If you look on the website Chronic Pain Partners, there is a recent video about genetic testing by one of the geneticists at UW Seattle. Listen to it! It helps make sense of it all!
People spends hours doing these reports & believing they see the variant in their genes. Everybody has less common alleles & the majority of them are completely benign! It is much less common, out of our 20,000+ genes to have an allele that causes a condition or disease. But it just takes 1 among those thousands to cause it, it takes research to know which one it is!
People that have never even taken a genetic class, but they think they know what they are talking about!!! I even had a geneticist here locally in our group say I was wrong, but her explanation made NO sense!!! I question what she really does!!!
Here is what I know!!! I have researched, I have taken college classes.... I am very interested in the genetic aspect of EDS!!!
COL5A1 is the gene that contains variants responsible for Classical EDS (Collagen type 5)
It contains 11,072 snps
23&me tests 118 of those
COL5A2 is also responsible for Classical EDS
It contains 5,321 snps
23&me does 32 of those
Do you see how much information your missing?????
Sites like livewello allow any user to make a template, just because the snp is in the gene it does not mean it causes EDS!!!
COL3A1 is responsible for Vascular EDS (Collagen type 3)
It contains 1,831 snps
23&me tests 42 snps
Again, you are missing 1,789 snps!!! There are 320+ mutations that cause VEDS!!!
TNXB can cause HEDS, there are 1,377 snps, 23&me does 91 of them
PLOD1 can cause type VI there are 2,059 snps & 23&me does 18 snps
FKBP14 has 587 snps, 23&me does 5 snps
I wish the general public had a chance to have genetic testing, actual clinical genetic testing. I wish people with EDS or suspected EDS or the MANY people misdiagnosed for years could get CLINICAL genetic testing! We are all trying to get whatever information we can so we can help the process of getting a diagnosis. The problem is, with non-clinical tests, the information is just NOT THERE!
If you look on the website Chronic Pain Partners, there is a recent video about genetic testing by one of the geneticists at UW Seattle. Listen to it! It helps make sense of it all!
People spends hours doing these reports & believing they see the variant in their genes. Everybody has less common alleles & the majority of them are completely benign! It is much less common, out of our 20,000+ genes to have an allele that causes a condition or disease. But it just takes 1 among those thousands to cause it, it takes research to know which one it is!
After all these years!!!
I had my genetic appointment with the geneticist at UW Seattle. they have connective tissues geneticists, not just general ones like the gentleman I saw a decade ago.
I was diagnosed with type III EDS, the hypermobility type!
He said my skin was not translucent enough to be considered for vascular EDS, so he would not perform the genetic test for it. My skin was not stretchy enough to suspect classical type EDS. I brought up a paper he had written about EDS. It stated that he recommended testing for VEDS if you have 2+ minor criteria, but obviously he does not follow what he wrote.
He looked at my fingers, inside my mouth, made me bend over & touch my hands flat on the floor, hyperextend my knee & elbows. He tried to sublux (partially dislocate) my wrists which do not sublux, but are now still hurting 2 weeks later. Both of my shoulders are permanently subluxed, according to my physiatrist. I love her! He listened to my heart, went over family history & all of my half-siblings diagnoses. Asked about my mother, whom we highly suspect to have EDS.
This really doesn't change my health plan, which is basically PT. He said swimming & bicycling which I know for a fact is not something I can consistently do.
I also went to see the neurosurgeon. I have a cerebellar tonsillar ectopia (herniation/descent) whatever you want to call it! They refuse to call it Chiari malformation because it only extends 3.8mm on a supine MRI. He did not even discuss an upright MRI or a cine MRI & he had to look up on his computer how to even measure & what measurement was considered Chiari. According to him, in his ignorance, it was 5mm and more.
I am still trying to find someone to take it seriously & realize just because my "migraines" are subsided doesn't mean I don't have a long list of symptoms still present! Chiari is more common in people with EDS. I have been researching through organizations like CSF & EDNF to learn more about it. He said I don't have a syrinx so no conern, yet I have NEVER has a thoracic MRI so how would he even know?!?!?!?
Nobody wants to find out what is wrong or ever make a damn diagnosis!!! All they want to do is mask symptoms & throw medication at me!!! I am having vision troubles & nobody ever bothers to send me to the only neuro-ophthalmologist here!!! I had to drive 6 hours each way to see that neurosurgeon & it was a complete waste of time! Seattle is the area that has an upright MRI, we don't have one around here! Yet again I missed my chance!!!
I was diagnosed with type III EDS, the hypermobility type!
He said my skin was not translucent enough to be considered for vascular EDS, so he would not perform the genetic test for it. My skin was not stretchy enough to suspect classical type EDS. I brought up a paper he had written about EDS. It stated that he recommended testing for VEDS if you have 2+ minor criteria, but obviously he does not follow what he wrote.
He looked at my fingers, inside my mouth, made me bend over & touch my hands flat on the floor, hyperextend my knee & elbows. He tried to sublux (partially dislocate) my wrists which do not sublux, but are now still hurting 2 weeks later. Both of my shoulders are permanently subluxed, according to my physiatrist. I love her! He listened to my heart, went over family history & all of my half-siblings diagnoses. Asked about my mother, whom we highly suspect to have EDS.
This really doesn't change my health plan, which is basically PT. He said swimming & bicycling which I know for a fact is not something I can consistently do.
I also went to see the neurosurgeon. I have a cerebellar tonsillar ectopia (herniation/descent) whatever you want to call it! They refuse to call it Chiari malformation because it only extends 3.8mm on a supine MRI. He did not even discuss an upright MRI or a cine MRI & he had to look up on his computer how to even measure & what measurement was considered Chiari. According to him, in his ignorance, it was 5mm and more.
I am still trying to find someone to take it seriously & realize just because my "migraines" are subsided doesn't mean I don't have a long list of symptoms still present! Chiari is more common in people with EDS. I have been researching through organizations like CSF & EDNF to learn more about it. He said I don't have a syrinx so no conern, yet I have NEVER has a thoracic MRI so how would he even know?!?!?!?
Nobody wants to find out what is wrong or ever make a damn diagnosis!!! All they want to do is mask symptoms & throw medication at me!!! I am having vision troubles & nobody ever bothers to send me to the only neuro-ophthalmologist here!!! I had to drive 6 hours each way to see that neurosurgeon & it was a complete waste of time! Seattle is the area that has an upright MRI, we don't have one around here! Yet again I missed my chance!!!
Sunday, August 2, 2015
Chiari Malformation anyone?
Been a struggle with doctors, nothing new!
I don't remember when or what I last wrote on here!
I finished PT for now, doing worse. My shoulder, hip, knee & back have been bothering me quite a bit. The PT gave me a massage one day & that night I slept on a heating pad & cried myself to sleep because of the pain. Cancelled my next appt because a week later & it still hurt. She asked about what happened & that made me uncomfortable... she was pretty insistent it couldn't be the massage.
Saw the rheumy again & was diagnosed with Raynaud's phenomenon & given meds. I took a photo to show him, of my blue toes. Because it seems everything is always dismissed so I am trying to document what I can. Since starting a calcium channel blocker my hands & feet are not ice cold. They feel normal, which to me felt really hot at first. Said my nailfold capillaries were abnormal too.
I continue to have memory, concentration, comprehension & spelling problems. I got sent to a neurologist, come to find out his specialty is sleep disorders.... why do they keep doing this crap to me?!?
So I get an MRI & am told everything is normal... I think there's no way that's right. I requested my medical records as far back as possible, got over 100 pages in the mail, back to 2 months old! Well what do ya know, my MRI from 97 says "tonsillar ectopia" and "cerebellar tonsils are low lying in the foramen magnum." Unfortunately this MRI is too old to get images & there is no measurement.
I request my images from the one I just had & it seems a bit low to me. This is also a horizontal MRI, not standing.
I am the one that did the ruler on there where I think they would possibly choose as the "cutoff point" of being IN the skull! Now this is a horizontal MRI, not standing MRI. It also looks like possibly a thin area for the CSF to flow?!?
Considering the notes from my first MRI & my symptoms, this is something I will not tolerate being dismissed! That is what my doctor is doing though!
I get headaches, migraines (that always start at the base of my skull), vision problems (retina specialist said there is no tear, just this week), dizziness, tinnitus (24/7 & loud as hell!!!), neck pain (chiropractor helped my TMJ & tried to help my neck), shoulder pain, ear pain.... the list goes on & on.
Lots of appts coming up. Still trying to get my referral to physiatry. Apparently I have been referred to 2 places & yet neither got any paperwork. My primary doctor completely dismissed me & said joint braces will make me worse but go buy them myself OTC. My rheumy & ortho had enough sense & compassion to request physio!!!
So the neurosurgeons that are familiar with this are on the opposite side of the state. Could be worse I suppose. I read that the severity is not measured by the extension, but more so by the CSF flow. So I am going to ask my doctor about a cervical MRI or cine MRI, doubt he will be all that receptive to my perseverance.
I had my eyes dilated at the ophthalmologist this week & it triggered a migraine. usually they come in clusters spread out by a few days or over a week between them. Instead, for the first time it lasted 4 days instead. Nausea, pain, but my aura was different & even gone for a while. Today I finally feel like it is about 95% gone, still some pain/tingling. It kinda feels like it falls asleep (pins & needles) at the base of my skull, not sure how else to explain it. I also had to use my cervical support because it feels like I can't hold up my head.
Well wishes to you all! Hope next week is a better week!
I don't remember when or what I last wrote on here!
I finished PT for now, doing worse. My shoulder, hip, knee & back have been bothering me quite a bit. The PT gave me a massage one day & that night I slept on a heating pad & cried myself to sleep because of the pain. Cancelled my next appt because a week later & it still hurt. She asked about what happened & that made me uncomfortable... she was pretty insistent it couldn't be the massage.
Saw the rheumy again & was diagnosed with Raynaud's phenomenon & given meds. I took a photo to show him, of my blue toes. Because it seems everything is always dismissed so I am trying to document what I can. Since starting a calcium channel blocker my hands & feet are not ice cold. They feel normal, which to me felt really hot at first. Said my nailfold capillaries were abnormal too.
I continue to have memory, concentration, comprehension & spelling problems. I got sent to a neurologist, come to find out his specialty is sleep disorders.... why do they keep doing this crap to me?!?
So I get an MRI & am told everything is normal... I think there's no way that's right. I requested my medical records as far back as possible, got over 100 pages in the mail, back to 2 months old! Well what do ya know, my MRI from 97 says "tonsillar ectopia" and "cerebellar tonsils are low lying in the foramen magnum." Unfortunately this MRI is too old to get images & there is no measurement.
I request my images from the one I just had & it seems a bit low to me. This is also a horizontal MRI, not standing.
Considering the notes from my first MRI & my symptoms, this is something I will not tolerate being dismissed! That is what my doctor is doing though!
Lots of appts coming up. Still trying to get my referral to physiatry. Apparently I have been referred to 2 places & yet neither got any paperwork. My primary doctor completely dismissed me & said joint braces will make me worse but go buy them myself OTC. My rheumy & ortho had enough sense & compassion to request physio!!!
So the neurosurgeons that are familiar with this are on the opposite side of the state. Could be worse I suppose. I read that the severity is not measured by the extension, but more so by the CSF flow. So I am going to ask my doctor about a cervical MRI or cine MRI, doubt he will be all that receptive to my perseverance.
I had my eyes dilated at the ophthalmologist this week & it triggered a migraine. usually they come in clusters spread out by a few days or over a week between them. Instead, for the first time it lasted 4 days instead. Nausea, pain, but my aura was different & even gone for a while. Today I finally feel like it is about 95% gone, still some pain/tingling. It kinda feels like it falls asleep (pins & needles) at the base of my skull, not sure how else to explain it. I also had to use my cervical support because it feels like I can't hold up my head.
Well wishes to you all! Hope next week is a better week!
Wednesday, May 20, 2015
Aquatic Therapy
Today was my first aquatic therapy appointment. Basically walking & exercises in the pool, similar to the land ones. Except no planking!!! Those were killer!!!
I asked my doctor back in March for the referral & didn't get called by PT until last week... ridiculous. Not sure what happened. My first appointment was done all wrong & they sent me to the wrong place. Both therapists are very nice, one is a bit more lenient than the other.
I was going to a chiropractor for my TMJ disorder. I would have to say it was not worth the cost, I had to pay 100% and every thing was so short term. Still continuing hand therapy & will do PT for a few weeks. Not much else I can do really.
I think I am lucky that I just have the joint problems & not any organ problems & severe stomach issues I read about, often associated with EDS. I just have to prevent injuries, try to eat even better (I have been a vegetarian for 2 years now) and strengthen whatever muscles I can to help keep stuff in place... although that is doubtful!
I asked my doctor back in March for the referral & didn't get called by PT until last week... ridiculous. Not sure what happened. My first appointment was done all wrong & they sent me to the wrong place. Both therapists are very nice, one is a bit more lenient than the other.
I was going to a chiropractor for my TMJ disorder. I would have to say it was not worth the cost, I had to pay 100% and every thing was so short term. Still continuing hand therapy & will do PT for a few weeks. Not much else I can do really.
I think I am lucky that I just have the joint problems & not any organ problems & severe stomach issues I read about, often associated with EDS. I just have to prevent injuries, try to eat even better (I have been a vegetarian for 2 years now) and strengthen whatever muscles I can to help keep stuff in place... although that is doubtful!
Finger splints
I don't understand why nobody ever told me about these before. For 35 years I never heard of a finger splint, saw it on another blog about EDS. Probably would have been helpful all this time. Now I have plastic ones, not so comfy.
 |
| plastic |
 |
| silver |
I just got my silver splints today. They gave me swan neck splints for my thumbs & pinkies. I think the boutonniere ones would work much better for my pinkies though. It doesn't quite hit my DIP joint, like the plastic ones barely did.
It was rather easy to get them approved, which amazes me since my insurance has not been helpful.
I also got accepted for genetic testing. I wrote back about my denial letter, because it did not make sense. I got a call that I can then make an appointment. Yay! It won't be until October. I have to drive 5 hours, get a new referral (will expire by then), and hope my rheumatologist doesn't ruin it all for me.
Friday, March 27, 2015
Not sure what's next...
Not much going on except I now have a cold, after the flu, after some infection that turned my finger purple & twice it's size. We also have bed bugs in our house, they eluded me for a long while & they are disgusting. Getting them treated next week... For a small fortune.
I am going back to my primary next week & going to ask her for a second opinion from a rheumatologist & see what she says. Still don't have my aquatic therapy referral, pretty disappointing it takes so long for something so simple. I have learned to keep my expectations low lately, not as many choices here for doctors. Oh well, I have suffered all my life, why stop now!?!
Feeling pretty terrible this week & this weekend we have to clear the attice for the bed bug treatment :(. Going to be SUPER sore after that...
I am going back to my primary next week & going to ask her for a second opinion from a rheumatologist & see what she says. Still don't have my aquatic therapy referral, pretty disappointing it takes so long for something so simple. I have learned to keep my expectations low lately, not as many choices here for doctors. Oh well, I have suffered all my life, why stop now!?!
Feeling pretty terrible this week & this weekend we have to clear the attice for the bed bug treatment :(. Going to be SUPER sore after that...
Tuesday, March 24, 2015
Tired of being lied to...
I never claimed to have proper grammar, btw. I have had too many head injuries & have spelling issues now, so I do my best...
I was allotted an hour at the rheumatologist, but got less, of course. He brought out a little piece of paper that listed the Beighton scoring & I score a 7/9 as always. He verbally told me EDS type III. On my paper & my chart it now says "hypermobility of joint" not even jointS!!! Not even hypermobility syndrome or whatever else they want to call it. He also put fibromyalgia. What makes me even more upset is the fibro was added after I life, it is not on my summary, just online. He lied to me basically, typical!
He told me to exercise & gave me an anti-depressant medication... this sounds all too familiar... at least it's not an hour of weight training like crazy lady told me to do.
Like I said, I did not have high hopes. One day when they do figure out how to diagnose EDS III using genetics, I would really like to pay a few previous doctors a visit. Maybe I can make a bunch of custom balloons that say "you were wrong" or "Thanks for the misdiagnosis." Maybe a cake with my genetic results on it... I have some time to think about it.
I had to drive almost a state over to find out nothing. I am achy, tired, sore, popping, and now aggravated. Didn't give me an answer for why my finger swelled & turned purple. Didn't run any new tests because the ones from last year were ok with him & the one's last month while I was on steroids are apparently also good enough.
Medical bills, time, energy, gas, etc all wasted, that's how I feel. I have a follow up appointment with him, but doubt I will keep it. I don't know if I should even bother going back to my regular doctor. I guess I will get my referrals for therapy & just be done with this. I might as well go back on the other insurance & stop wasting all this money.
I was allotted an hour at the rheumatologist, but got less, of course. He brought out a little piece of paper that listed the Beighton scoring & I score a 7/9 as always. He verbally told me EDS type III. On my paper & my chart it now says "hypermobility of joint" not even jointS!!! Not even hypermobility syndrome or whatever else they want to call it. He also put fibromyalgia. What makes me even more upset is the fibro was added after I life, it is not on my summary, just online. He lied to me basically, typical!
He told me to exercise & gave me an anti-depressant medication... this sounds all too familiar... at least it's not an hour of weight training like crazy lady told me to do.
Like I said, I did not have high hopes. One day when they do figure out how to diagnose EDS III using genetics, I would really like to pay a few previous doctors a visit. Maybe I can make a bunch of custom balloons that say "you were wrong" or "Thanks for the misdiagnosis." Maybe a cake with my genetic results on it... I have some time to think about it.
I had to drive almost a state over to find out nothing. I am achy, tired, sore, popping, and now aggravated. Didn't give me an answer for why my finger swelled & turned purple. Didn't run any new tests because the ones from last year were ok with him & the one's last month while I was on steroids are apparently also good enough.
Medical bills, time, energy, gas, etc all wasted, that's how I feel. I have a follow up appointment with him, but doubt I will keep it. I don't know if I should even bother going back to my regular doctor. I guess I will get my referrals for therapy & just be done with this. I might as well go back on the other insurance & stop wasting all this money.
Anxiety over rheumatology appointment today
I have anxiety over everything...
My appt with my new rheumy isn't for a few hours. I don't have much in terms of expectations because I am highly doubtful I have any other conditions that would require him. The last one I saw, about a year ago, said he would not send me for any further testing to determine EDS type. He said it's all the same & won't change anything. He gave me Cymbalta & said that was all he could do for me.
I won't even start on how that medication affected me, except that I only lasted a few days on it & the withdrawals were just as horrible! I also took Lyrica, in the past, another one that I just could not tolerate. I have been trying more natural remedies, things like essential oils & making my own daily products naturally; has not been helping unfortunately.
I asked my orthopedic doctor for a referral to aquatic therapy, he said he doesn't think it will help & that I need to do regular PT to strengthen my muscles around my knees. I have done PT many times & I always end up in pain & stop going. Well, the place he sent me to is not a provider. I checked my insurance account online & it changed to another facility, that I did not see aquatic therapy offered. Then a 3rd place popped up instead. It was the same place I went before, that he sent me in December & I never went. They don't offer aquatic therapy either. I called my insurance to get it changed & they said they can't change it. I was very upset, I said you had changed it twice already & now you can't????
Luckily I got an e-mail reply from my ortho office saying they had changed it to the place I requested. I don't know what I should do or who to see really. But I have to start somewhere & my thought is that aquatic therapy will be a good start & shouldn't hurt me enough to cause me to stop, like PT always has. This facility also offers physiatry, I am curious about that. I am also asking for the hand therapy place.
I feel like that's about all I can do. Bracing, low impact exercise, specialists. Now that I have changed my insurance & have more choices & freedom, I think I need more people that specialize in specific parts of the body. It seems like pills don't bring much benefit for me. I am on temazepam for my TMJ disorder, temporarily, to help me relax at night. I still have pain, so I don't think it is helping much. The one difference I have noticed is that I am dreaming. I have had multiple head injuries & lately, for a few months, I have either not been dreaming or not remembering at all upon awaking. So it is interesting to be dreaming again.
My appt with my new rheumy isn't for a few hours. I don't have much in terms of expectations because I am highly doubtful I have any other conditions that would require him. The last one I saw, about a year ago, said he would not send me for any further testing to determine EDS type. He said it's all the same & won't change anything. He gave me Cymbalta & said that was all he could do for me.
I won't even start on how that medication affected me, except that I only lasted a few days on it & the withdrawals were just as horrible! I also took Lyrica, in the past, another one that I just could not tolerate. I have been trying more natural remedies, things like essential oils & making my own daily products naturally; has not been helping unfortunately.
I asked my orthopedic doctor for a referral to aquatic therapy, he said he doesn't think it will help & that I need to do regular PT to strengthen my muscles around my knees. I have done PT many times & I always end up in pain & stop going. Well, the place he sent me to is not a provider. I checked my insurance account online & it changed to another facility, that I did not see aquatic therapy offered. Then a 3rd place popped up instead. It was the same place I went before, that he sent me in December & I never went. They don't offer aquatic therapy either. I called my insurance to get it changed & they said they can't change it. I was very upset, I said you had changed it twice already & now you can't????
Luckily I got an e-mail reply from my ortho office saying they had changed it to the place I requested. I don't know what I should do or who to see really. But I have to start somewhere & my thought is that aquatic therapy will be a good start & shouldn't hurt me enough to cause me to stop, like PT always has. This facility also offers physiatry, I am curious about that. I am also asking for the hand therapy place.
I feel like that's about all I can do. Bracing, low impact exercise, specialists. Now that I have changed my insurance & have more choices & freedom, I think I need more people that specialize in specific parts of the body. It seems like pills don't bring much benefit for me. I am on temazepam for my TMJ disorder, temporarily, to help me relax at night. I still have pain, so I don't think it is helping much. The one difference I have noticed is that I am dreaming. I have had multiple head injuries & lately, for a few months, I have either not been dreaming or not remembering at all upon awaking. So it is interesting to be dreaming again.
 |
| I used to lock both my thumbs like this is middle school, during typing class, just to mess with my teachers. Something must be going on with my right hand because I can't do it to that thumb anymore |
Monday, March 23, 2015
I guess I should have started this sooner
Hello all you zebras! Or maybe you are here because you were searching to learn more about EDS, Ehlers-Danlos Syndrome?
I have unsuccessfully blogged about a few things... crafts, wrestling, vegetarian recipes, etc...
I thought maybe I should blog about something I am more familiar with since I have lived with it for over 3 decades!
I still have yet to get a diagnosis of what type of EDS I have. Back in 2004 I saw an orthopedic doctor that later called me at home asking if I had ever heard of Marfan syndrome. He called me a loose jointed gal & told me to avoid sports & be careful...
I ended up going to a doctor in genetics at the university & being told I do not have Marfan syndrome, but may have a type of EDS. I had knee surgery on my right knee that year, while I was under my doctor hyper-extended my knee 15 degrees, cleaned up my knee & I was off! About a month later, after the swelling, it went back to how it was before the surgery.
I can sublux everything except my elbows. I can dislocate my patellas. I was told by previous doctors that I have arthritis & need surgery. We just moved & now that I see an honest doctor. He told me that I am not a good candidate for surgery because of my connective tissue disorder. He said my right patella can move 4 quadrants & he stopped because it showed no sign of stopping. I have never been told that before, never said that in my records. In fact, the doctor that wanted to do a lateral release (DON'T DO THAT BTW!!!) on me said I have normal stability & ROM.... obviously I never went back to that quack!
I wish I could say that I have found things that help, but I have not. I am allergic to SO many medications. I have adverse reactions to even more. I have done PT SO many times to no avail! I have been told I just have fibromyalgia. I was also sent to behavioral health for dietary counseling & weight management. I am 5'7" and 135 lbs... she asked why the heak I was sent there?!? But she proceeded to tell me that I should be weight training for an hour daily.... I think she was trying to kill me or severely injure me... and of course, she had no idea what EDS is or what it causes.
I hope to learn more & find some relief. I am looking in to getting finger splints and apparently doing PT again... although trying to get in somewhere else, insurance is NOT helping me there! I feel like I am constantly searching online for validation or answers to what is happening. I never find anything more than what I already know. I really hope the EDS clinic that opened in Maryland last year will find answers, share what they learn with doctors & find a better way to diagnose EDS, especially type III. I hope awareness will spread, especially in the medical community. I am REALLY tired of hearing nurses & doctors say "I have no idea what EDS is" or "I heard of it, but don't remember anything, never seen it."
I have unsuccessfully blogged about a few things... crafts, wrestling, vegetarian recipes, etc...
I thought maybe I should blog about something I am more familiar with since I have lived with it for over 3 decades!
I still have yet to get a diagnosis of what type of EDS I have. Back in 2004 I saw an orthopedic doctor that later called me at home asking if I had ever heard of Marfan syndrome. He called me a loose jointed gal & told me to avoid sports & be careful...
I ended up going to a doctor in genetics at the university & being told I do not have Marfan syndrome, but may have a type of EDS. I had knee surgery on my right knee that year, while I was under my doctor hyper-extended my knee 15 degrees, cleaned up my knee & I was off! About a month later, after the swelling, it went back to how it was before the surgery.
I can sublux everything except my elbows. I can dislocate my patellas. I was told by previous doctors that I have arthritis & need surgery. We just moved & now that I see an honest doctor. He told me that I am not a good candidate for surgery because of my connective tissue disorder. He said my right patella can move 4 quadrants & he stopped because it showed no sign of stopping. I have never been told that before, never said that in my records. In fact, the doctor that wanted to do a lateral release (DON'T DO THAT BTW!!!) on me said I have normal stability & ROM.... obviously I never went back to that quack!
I wish I could say that I have found things that help, but I have not. I am allergic to SO many medications. I have adverse reactions to even more. I have done PT SO many times to no avail! I have been told I just have fibromyalgia. I was also sent to behavioral health for dietary counseling & weight management. I am 5'7" and 135 lbs... she asked why the heak I was sent there?!? But she proceeded to tell me that I should be weight training for an hour daily.... I think she was trying to kill me or severely injure me... and of course, she had no idea what EDS is or what it causes.
I hope to learn more & find some relief. I am looking in to getting finger splints and apparently doing PT again... although trying to get in somewhere else, insurance is NOT helping me there! I feel like I am constantly searching online for validation or answers to what is happening. I never find anything more than what I already know. I really hope the EDS clinic that opened in Maryland last year will find answers, share what they learn with doctors & find a better way to diagnose EDS, especially type III. I hope awareness will spread, especially in the medical community. I am REALLY tired of hearing nurses & doctors say "I have no idea what EDS is" or "I heard of it, but don't remember anything, never seen it."
Subscribe to:
Comments (Atom)