May 30, 2015 at 1:29 am #840AmacadParticipant
Hi, hope I am posting this in the correct place. I am trying to sort out why blood thinners worked in sorting out my bowel problems, and the Driscoll theory has been the best clue I have found so far, so just want to see if anyone else has encountered this? I guess some background may help, I have not been diagnosed with EDS, though one of my cousins was recently diagnosed with HEDS, which is how I found out about it, so I did a lot of research on it, and found it explained all the problems my Dad, sister and myself have had since we were kids, but we have it fairly mildly, so not holding out a lot of hope getting diagnosed.
I do have knees that sublux, and have dislocated my right knee 4 times, my hips, shoulders, feet and spine pop and crack often, but I would only get a 4 out of 9 on the beighton scale, I have headaches often, most in the back of my head and down my neck, as well as tinnitus and sore ears. I do have a severe kyphosis, which was diagnosed as scheuermann’s disease, as it is around the T11-T13 vertebrae, though my Dad and grandmother had this as well, just up higher in their spine, all diagnosed as different things though, I do get a fair bit of pain in my spine and knees, but does not seem to be at the level other people describe, I can still work through it, hot water bottles are the best. Most of my problems have been with the bowel and stomach, at one point I could not have a bowel movement at all with out taking laxatives, and I would get quite painful stomach aches, I have had nausea since I was a kid, but a hiatus hernia operation fixed it for a while, then it came back stronger than ever a few years ago, so bad that I could not eat, but proton pump inhibitors work very well for it.
Last year I had patella stablization surgery, and 2 weeks later had a bilateral pulmonary embolism, the doctor said they were rather big, and no wonder I was having chest pain, and I am thinking, hardly any, if I did not have breathing problems when I stood up, I would not have even gone to the hospital, it was that mild. This is how I ended up on blood thinners, my bowel problems soon resolved, though I certainly did not attribute it to them at the time, I thought my bowel had fixed itself, but when I came off them in January, the problems came back, it was only a few weeks ago I finally put 2 and 2 together, I searched the Internet looking for links between blood thinners and resolving bowel problems, but could not find anything, then I was reading the Driscoll Theory last week, and saw it mentioned blood thinners and the vagus nerve, and since the vagus nerve controls digestion and the bowels, I figured this could be it. I gave my doctor a copy of my cervical spine image, to try and convince him to look into it with me, I think the cerebellum is squished down enough to hinder CSF flow, I have looked at so many MRI scans on the internet to compare mine too, and it does not look normal to me, but not being a doctor, I am not overly confident in my view. (I have been trying for 2 days to attach the image to this post, but just can’t seem to get it to work.)
I have read that the vagus nerve could also be responsible for gastroparesis, and thought that could explain the nausea, and the food coming back up hours after eating it. According to my nutritional doctor, and hair mineral analysis, my iron stores are not even registering, and she said I have the lowest levels of everything else she has seen in a while, but my GP via blood tests can only see my vit D is low, and says everything thing else is fine. I think I will have trouble convincing the doctor to test me for gastroparesis, as the common perception is that if you have it you will be thin and losing weight, were as I just keep putting it on, even went down to 2 meals a day, but still keep gaining weight. Sorry for such a long post, just to ask one question. Guess I am trying to convince myself I have enough things to suggest I have EDS, when I am expecting the doctor to say, you are not flexible enough, you don’t have enough joint pain, or stretchy skin, so you don’t have it, therefore all the problems I have would be separate issues, and not connected at all.June 9, 2015 at 7:50 pm #5520BarbaraParticipant
You need to get the low iron sorted because this can really mess up the immune system, also have they checked your B12 level? I think a good multi-vitamin and mineral might help one or two of your symptoms. Worth a try ?June 9, 2015 at 8:42 pm #5525BarbaraParticipant
I gave my doctor a copy of my cervical spine image, to try and convince him to look into it with me, I think the cerebellum is squished down enough to hinder CSF flow, I have looked at so many MRI scans on the internet to compare mine too, and it does not look normal to me, but not being a doctor, I am not overly confident in my view. (I have been trying for 2 days to attach the image to this post, but just can’t seem to get it to work.)
This post might help you with that:
If the file size is too big (like in a .bmp file) you won’t be able to send it you see, it’s best saved as a .jpeg file, which is much smaller.June 11, 2015 at 10:11 am #5531AmacadParticipant
Thanks Barbara, Will have to get onto those iron supplements again, I have had my B12 tested, doctor said it was normal, but I got a copy of the test, and it is only just in the normal range, a few points lower, and he would be telling me it was not normal, so I started giving myself B12 injections, I heard that was the best method, but it did not do anything, or raise the levels, maybe I need to try a different method. I did get a referral to a rheumatologist today who knows about EDS, so will see how that goes.
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