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Lab-Scientist-LadyParticipant
Welcome.
Lab-Scientist-LadyParticipantHi Allison,
I respond to your pm.
ShondaLab-Scientist-LadyParticipantI get them from time to time too. I never really though much about it. I remember they were worse during pregnancy just like the rest of my muscle cramps. I just recently learned I had EDS. So before I would load with magnesium, water and electrolytes. I was the weird prego lady eating pickles and drinking dye free Gatorade by the gallons. B12 seems to help me also.
ShondaLab-Scientist-LadyParticipantHere is the link to the tread of Babara’s MRI.
September 30, 2013 at 9:02 pm in reply to: Newbie looking for advice about symptoms and appointments #4464Lab-Scientist-LadyParticipantI have been MIA. I have a cold. That won’t go away. I saw the therapist, but I don’t know how long I will keep it up. It is hard not to cry in there. I keep thinking this person does not care and I am paying her. They can’t really help. It is what it is.
I am very intrigued now about the 23ME test. So you did it on your husband too? That is cool.
How is your MIL?
ShondaLab-Scientist-LadyParticipantNow I see it lol. Can you say brain fog. I sent you a message.
ShondaLab-Scientist-LadyParticipantBeautiful!
Sorry now I am switching to Microbiologist mode: you mentioned undulating fevers. Have they looked for the cause being a bacterium called Brucella it is the causative organism of brucellosis. It is a hard organism to treat, but it takes a person’s life away. Some people go insane because it gets so bad. It is difficult to treat BUT IT IS TREATABLE. The organism hides in macrophages away from your bodies immune system and replicates. When it burst out of the the cells it causes a fever. Then they move on to more cells and the fever disappears until the cells rupture. An infectious disease doctor can diagnose you by looking for antibodies to Brucella. Then you can start the appropriate treatment to get you life back.
ShondaLab-Scientist-LadyParticipantHi. I had the worst subluxation of my patella at 19. I progressed fast with more subluxations. I wound up with severe arthritis, degenerative joint disease, deformed legs, etc. I did every conservative treatment I could to by my self time, but I will say the last 9 years has been a down hill slide. I am now 37 with bilateral total knee replacements and I am disabled. I only found out this year that I had EDS. However, every person is different. Some are less affected by EDS than others. In my family of classical EDSers, I am the worst in the last two generations. I pray it stays that way. Shonda
Lab-Scientist-LadyParticipantLovey and fun. I love that it holds memories too.
September 30, 2013 at 7:59 pm in reply to: Few final entries . Paintings,drawings and poetry x #4457Lab-Scientist-LadyParticipantGreat work!
Lab-Scientist-LadyParticipantAwesome,! I love the fall colors. Where do you live? I am in Texas and we don’t get the same fall colors as in other places I have live
Shonda
.Lab-Scientist-LadyParticipantFrom those images it is hard to see much. They are the cuts going into the skull. You should have a sagittal cut that is much better.
ShondaLab-Scientist-LadyParticipantI think if doctors were bothered about getting sued, they’d be more conscientious and do something to help us. I think the opposite is true, nobody bothers to sue them, so where’s the risk ? There’s obviously very little internal monitoring, so basically, if they turn up for work, listen to the patient, dish out a few pills (so long as the pills aren’t harmful) they get paid regardless, whether what they have done for the patient is successful or not. There is no incentive to cure us, or even attempt to lessen our symptoms, they just carry on regardless, knowing they are on a win:win. The system is all wrong!
They ought to have to complete some kind of feedback e.g.
Patient X reports symptoms a,b,c,d,e,f,g they were given XXX drug and symptoms are gone
or
Patient X reports symptoms a,b,c,d,e,f,g they were given XXX drug and d,e,f, symptoms persist,
therefore given ZZZ drug and referred to Cardiologistand so on and so forth until ALL symptoms are dealt with.
Certainly something better than what we have now!
Regards
Barbara
(UK)hi Barbara,
In the states to many frivolous malpractice suits have been filed. Making doctors not wanting to spend the time on difficult patients. We are instead referred to so and so. Without anyone looking at the big picture. Now doctors are forced to see 6 to 10 patients an hour. As you can imagine that does not work. They don’t want to take on patients that are hard personalities and hard disease because that takes up to much time. I have now been to two geneticist, but neither will manage me. My poor PCP is nice, but she is no expert on EDS. I am not going to get political here, but all that you complain about in the UK is starting here in the USA. Medicine needs to change. It is stuck with old ideas and needs to catch up with the latest technology. It needs to be about costumer service and run like a business. Competition forces doctors to stay up to date and keeps them from being lazy.
ShondaLab-Scientist-LadyParticipantWe are often told we are “normal” because the doctors miss the external fluid. Your symptoms sounds like you have high intercranial pressure. Diamox is a cheap fix and works overnight. Have you watched Dr. Diana’s videos on Diamox?
ShondaLab-Scientist-LadyParticipantHi,
I am considered a severe classical EDS. You do have EDS or you don’t, but the severity can range from one affected individual to another. Just like some one with RA maybe bedridden or only have two joints affected. In the classical form it is autosomal dominate, but it also shows mosaicism. In mosaicism a few cells can express the gene for faulty collagen or all the cells of a person’s body can express the faulty collagen. The more you have making the bad protein the worst you are. Also, every person is genetically different and depending on other genes inherited and their expression depend on how bad EDS can affect each individual.
Shonda -
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