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PalominoMorganParticipant
Ditto. I don’t know how she does all she does, but am guessing she is running on pure passion. Sad that some are intimidated by her research, but hopefully one day they will HAVE to recognize her work. Many other diseases and highly educated docs already have.
PalominoMorganParticipantI have no idea what their problem is, but they really don’t want to look in the mirror. It’s a shame too that they come down hard on those who do try to promote awareness and direct people to their website. If it wasn’t for the other bendies and amazing drs (though I wish Dr. D wasnt shunned) I would boycott conference. Instead I think I will go and do my own idea for connecting people since EDNF seems to disorganized to get anything done. I can tell you though it will be hard to listen to them beg for volunteers again after they did jack squat with people who offered to help last year.
I also need to get off my arse and get my thirst designs out there. I have some REALLY good ones. Proceeds to go to MY service dog’s training and awareness projects that I have ideas for.
I have also considered coming back to Expire under a pseudonym. Not sure it’s worth the hassle though.
PalominoMorganParticipantI had found info that perfectly described the electric shock thing. Will try to find it again but the gist was that the dura becomes inflames and aggravated. It’s very under diagnosed too. Go figure.
PalominoMorganParticipantWill post a pic of my pup from the other computer.
PalominoMorganParticipantRight eye.
PalominoMorganParticipantAuction over. I have a service child too but she’s at her dads half the time. Besides, service dogs are more widely accepted.
Puppy has a blog though. http://talvitheservicedog.blogspot.com/
PalominoMorganParticipantWow…. what outdated thinking. So many of us have IBS, gastoparesis, etc that stomach issues are a very common result of EDS. EDS affects collagen, not just joints. That is why EDS affects the whole body.
As for finding a new doc, call and ask new offices if the dr is familiar with EDS and how if affects gastro issues. They might have to ask the dr and call you back.
There was a gastro dr, can’t remember who, who started using the Beighton criteria on his IBS patients, and found a HUGE percentage of them scored highly and had EDS when further screened.
PalominoMorganParticipantNot an expert and hope Dr. D will weigh in. It seems to me though that it certainly could interfere with all sorts of things.
PalominoMorganParticipantAll this talk of CCSVI makes me think I really need to be evaluated before having tethered cord surgery. *sigh* my attempt to this at an “EDS knowledgable” doctor didn’t go well though because the guy was a self-righteous ass.
PalominoMorganParticipantCool. Try resizing the picture so it is smaller or save it as a JPEG. Some file types use up less KB’s.
PalominoMorganParticipantHi Elizabeth. Start by reading The Driscoll Theory part 1 and 2. Dr. D explains a lot in these two documents. The Beighton is only the initial screening. Some suggest the Brighton Criteria as more comprehensive. You might want to google and look up Brighton Criteria. Some people can be double jointed and not have EDS, but once you start having other issues it starts to look like a duck and quack like a duck. Check out that info and let me know if any of it helps.
PalominoMorganParticipantHi. Welcome to the same boat I’m on. It’s craptastic. What is going on is everything Dr D writes about in Part 2 of The Driscoll Theory. I HIGHLY suggest you purchase it (small contribution to keep her work going) and read it front to back. You are EXACTLY the kind of person Dr D describes. There are also treatment suggestions and management suggestions in Part 2.
March 15, 2012 at 2:06 pm in reply to: partners of people with these diseases – what do we do ? #1848PalominoMorganParticipantAs a sufferer of organic brain disease and mast cell (and lots of other stuff) I have been in her shoes. In my case it took me telling my then other Hal’s “you are asking to pre-board the Titanic. Are you sure that’s what you REALLY want to do? Because the only thing worse than doing all this alone is to start down a path with someone and when I need them most they aren’t there.”. In my case she said yes, but her actions later proved otherwise.
There is guilt, doubt, and anxiety that if you truly open up to someone they will use it against you, abandon you, etc. I would guess she has been burned before by people close to her. This is the only way she knows how to cope with it. If you TRULY mean it when you say you know what you are in for then stay supportive and let her know you aren’t going anywhere. This may be a test that even she doesn’t realize she is doing to see if you really mean it when you say you’ll wait for her.
The other key is she needs appropriate medical treatment to control pain, mast cells, brain issues, and therapy to handle all this emotionally. Without therapy as a safe place for her to work thru some things this may never change. It is a SERIOUS CONSCIOUS effort to put ourselves in a relationship. Guilt and similar feelings are a huge burden/obstacle to overcome.
PalominoMorganParticipantSorry for your loss but glad to hear you got more pieces to the puzzle.
PalominoMorganParticipantHi. I’m in a very similar boat. My last CT showed LOTS of calcifications and hyperintensities. No MS dx Though. Fine by me. I have plenty of symptoms too but plenty of issues that COULD be causing them.
Where to start? Start by reading the Driscoll Theory, part 1 and 2. Dr D really gets in to how these issues are all related. Make sure you have the mast cells under control with histamine an proton pump inhibitors. Where to find a doc who gets it? Dr Francomano in Baltimore, Dr Castells in Boston, or Dr Afrin in either North or South Carolina. Any doctor can work with us IF they are open minded, willing to listen, and to go learn. My best Docs are Dr Francomano, my PCP, and my physical therapist. Dr Henderson is also up there too on the Neuro end of things.
Hope this helps in some way. You certainly are not alone here.
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