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Hello,
I have been fighting my OI for a year now. I have made progress but, it is still extremely hard as I struggle with symptoms daily. Does anyone here have OI and EDS? I don’t quite meet the criteria for POTS. I don’t get high heart rates. I am still trying to figure out the cause of my OI. I want to learn more about EDS because I have noticed on the beighton scale I am prob a 9/9. Can you just be super double jointed and not have EDS? I know that these illnesses can go hand in hand. But, I do not know a lot about them. I am also trying to understand this mast cell thing too. Dr Diana or anyone with any advice to steer me in the right direction it would be greatly appreciated. I just found you guys and so thankful. My POTS site has also helped me a lot but it is still a lonely ride. I haven’t hear of hardly anyone that has OI and not POTS. Other then Greg Page from the wiggles :)Thank you !Hi 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.
I haven’t hear of hardly anyone that has OI and not POTS. Other then Greg Page from the wiggles :)Thank you !
Hon, I am leaning toward your OI possibly being your first symptom of POTS (or perhaps your most prevalent). With myself, I noticed gastroparesis first, then OI. It was years before I began to notice the other symptoms and signs. Unfortunately, as time goes by, and without proper treatment, we can go down a spectrum of conditions over time. I will do everything I can to keep you from progressing, OK? That is what my research is for. A huge “thank you” to Palomino — yes, please start reading through The Driscoll Theory, Parts 1 and 2. Let’s get a jump on your symptoms and stop them dead in their tracks. OK? Big hug, Diana
Hi 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.
Thank you for the info. I definitely have all the double jointed stuff but, looking at the brighton criteria I don’t think I have any of that. Other then the wrist thing. I don’t think this relates to eds but being that it is rare I will mention it. I had a bone in my wrist lose blood supply to it about 10 years ago and had surgery for it. I think this is probably something totally different and doesn’t relate though.
I have been reading the Driscoll Theory and it is very helpful. I think I will have to read it it a few more times to really understand it and take it all in. So grateful to Dr. Diana for the the information! Thank you for responding also!
I haven’t hear of hardly anyone that has OI and not POTS. Other then Greg Page from the wiggles :)Thank you !
Hon, I am leaning toward your OI possibly being your first symptom of POTS (or perhaps your most prevalent). With myself, I noticed gastroparesis first, then OI. It was years before I began to notice the other symptoms and signs. Unfortunately, as time goes by, and without proper treatment, we can go down a spectrum of conditions over time. I will do everything I can to keep you from progressing, OK? That is what my research is for. A huge “thank you” to Palomino — yes, please start reading through The Driscoll Theory, Parts 1 and 2. Let’s get a jump on your symptoms and stop them dead in their tracks. OK? Big hug, Diana
Thank you so much for all your research I am very grateful! I am reading it all and trying to take it all in. My biggest question is if I had a normal brain mri does that rule out problems with cerebral spinal fluid? I do get a sore neck and shoulders all the time but, never would have related it to anything. My ears do seem a little watery in the morning as well. I have been treating my symptoms naturally for a year now and have made progress but, here I am a year later and a lot of my life consists of living on the couch. As all of us feel, I just want to get better for my husband and children.
If you don’t have time to respond I will understand, I just thought I should put it all out there:
I am 30 years old.
I was born with too many red blood cells and I know they treated it some how.
I have a huge history of extreme allergies and asthma as a child.
Teenage years I felt mostly fine.
Pregnancies were very hard on me and especially the second one. I now know that my symptoms were very OIsh. After pregnancy it went away. I then was hospitalized for a week with the worst case of mastitis the hospital had ever saw.
about 3 years later after extreme stress and feeling a little sick here and there I had a sudden onset of these OI symptoms. I was bedridden the first month and I have been sick ever since.My biggest symptoms are: Feeling ill everyday, nausea, light-headed,low blood pressure, fatigue,pre-syncope, headaches, optical migraines a few times a month, extreme sensitivity to heat, sensitive to the light, I also have bladder problems for over ten years now which I believe is probably IC but never been diagnosed. Oh and my joints are very hyper-mobile but, I do Not have stretchy skin.
My Dad has an auto-immune disease (reiter’s syndrome).
My Grandma died of bladder cancer.Also do you think any of the medications you mentioned in your book would work for me?
Thank you for your reply above as I know you are a busy woman. Hugs to you for everything you do! You are truly a blessing.
Elizabeth,
Just wanted to comment on the mastitis issue (and wow, makes me hurt all over thinking about it being so bad as to require hospitalization!) as I would have mastitis multiple times with each baby I nursed (except my youngest,now 3, because I hardly made any milk no matter trying everything lactation consultants suggested including an RX for Domperidone which is a galactagogue… I think I was too sick overall and making breastmilk was a low priority for my body). I did a lot of research because I was so tired of getting mastitis and found some info about using ultrasound (the kind used on muscles, etc.) to help break up the plug that was leading or started the infection process. I did that several times with my second to last breastfeeding baby and it did help (I went to my chiropractor and shared the info and instructions with him and he would set up the ultrasound machine and timer and then leave the room and I would do the treatment on myself).All this to say I now wonder if all this mastitis is because of an underlying blood flow issue? I have CCSVI (as well as EDS, POTS, etc.) and so I know my blood flow is faulty. I know my ability to make milk got less and less as I got sicker over the last several children I had (didn’t KNOW I was sick then, as pregnancy would give me an awesome remission from the symptoms I was having off and on then) and breastmilk is totally dependent on blood flow, so I think the connection to low quantity of milk is easily made. But, I also now wonder about this same poor blood flow contributing to mastitis. Maybe I’m wrong. Maybe it is more connected to cytokines? Hmm….
Oh and I also had worse OI/POTS symptoms during pregnancy, especially the first and second trimesters. First time I ever fainted was during my first pregnancy, while standing in line at the grocery store. So embarrassing! It would happen pretty often, but I learned to get my head down so I wouldn’t faint after the first time!
Your list of biggest symptoms are all like mine! I will tell you that taking Diamox has helped so much with many of those symptoms! The bladder issues (which they think I probably have IC but I wasn’t crazy about having the testing done): the one thing that has reduced the amount of bladder pain issues for me (it always feels like a bladder infection, and sometimes it is, and sometimes it isn’t) was to cut out sugar and reduce carbs. For me at least, that really helped my bladder. And also keeping up on water. If I get a little dehydrated I will start to notice bladder discomfort too.
I was also not a clear cut EDS DX… took seeing a neurologist who thinks outside the box a bit and looked at all of me instead of JUST the Beighton scale and skin/scars. I have kids that score higher than I do on the scale, some that have the stretchy skin and some that have the really wide scars, but seems none have all of those together. Some have had dislocations, but not some of the other outward signs. So, don’t give up on the EDS connection. There are other things to look at/consider for an EDS DX.
Elizabeth,
Just wanted to comment on the mastitis issue (and wow, makes me hurt all over thinking about it being so bad as to require hospitalization!) as I would have mastitis multiple times with each baby I nursed (except my youngest,now 3, because I hardly made any milk no matter trying everything lactation consultants suggested including an RX for Domperidone which is a galactagogue… I think I was too sick overall and making breastmilk was a low priority for my body). I did a lot of research because I was so tired of getting mastitis and found some info about using ultrasound (the kind used on muscles, etc.) to help break up the plug that was leading or started the infection process. I did that several times with my second to last breastfeeding baby and it did help (I went to my chiropractor and shared the info and instructions with him and he would set up the ultrasound machine and timer and then leave the room and I would do the treatment on myself).All this to say I now wonder if all this mastitis is because of an underlying blood flow issue? I have CCSVI (as well as EDS, POTS, etc.) and so I know my blood flow is faulty. I know my ability to make milk got less and less as I got sicker over the last several children I had (didn’t KNOW I was sick then, as pregnancy would give me an awesome remission from the symptoms I was having off and on then) and breastmilk is totally dependent on blood flow, so I think the connection to low quantity of milk is easily made. But, I also now wonder about this same poor blood flow contributing to mastitis. Maybe I’m wrong. Maybe it is more connected to cytokines? Hmm….
Oh and I also had worse OI/POTS symptoms during pregnancy, especially the first and second trimesters. First time I ever fainted was during my first pregnancy, while standing in line at the grocery store. So embarrassing! It would happen pretty often, but I learned to get my head down so I wouldn’t faint after the first time!
Your list of biggest symptoms are all like mine! I will tell you that taking Diamox has helped so much with many of those symptoms! The bladder issues (which they think I probably have IC but I wasn’t crazy about having the testing done): the one thing that has reduced the amount of bladder pain issues for me (it always feels like a bladder infection, and sometimes it is, and sometimes it isn’t) was to cut out sugar and reduce carbs. For me at least, that really helped my bladder. And also keeping up on water. If I get a little dehydrated I will start to notice bladder discomfort too.
I was also not a clear cut EDS DX… took seeing a neurologist who thinks outside the box a bit and looked at all of me instead of JUST the Beighton scale and skin/scars. I have kids that score higher than I do on the scale, some that have the stretchy skin and some that have the really wide scars, but seems none have all of those together. Some have had dislocations, but not some of the other outward signs. So, don’t give up on the EDS connection. There are other things to look at/consider for an EDS DX.
Thank you so much for your reply!
I had mastitis with both my pregnancies also but, the second one was the bad one. I will never forget how horrible it was. ugh! Your thinking process of the blood flow problem could definitly be on to something! I am not too familiar with cytokines but, trying to learn more about that. That is wonderful that you found the use of ultrasound to help with the mastitis! I will keep that in mind if I ever find myself pregnant again :).Thank you for your info on what helped you with your bladder pain. It can get so bad sometimes as I am sure you know! You said it exactly when you said sometimes it is a bladder infection and sometimes it isn’t. My last bad episode was so extreme I thought there was no way it could NOT be an infection. Well it wasn’t so I was on those antibiotics for no reason. Anyway I have found staying hydrated to be the biggest help with that too. When I was in pain with it before I use to always hop in a hot bath but, now that makes my OI act up really bad. So I read some advice on a IC site one time and it was good advice. Kinda weird but it was to apply a heating pad in between your legs. lol It helps me get through the pain until the uristat kicks in. I notice low carbs and sugar help me with my OI. I will have to pay attention if that could be a help with the bladder issues as well. I also found that I have to be careful with acidic food because I think that acts it up too.
How much Diamox do you take? How long have you been taking it and have you noticed any side-effects? That’s exciting that our symptoms are very similar so we can maybe help eachother. I am sorry you are also going through this though. It has been the hardest time of my life. Everything you said about your symptoms was so me. It sounds like you have a full house also and it makes it so hard dealing with all this. How many children do you have? I have hope we will get better! Are you on any support groups? I am so happy I found this site. Thanks again for sharing.
Take care!
How much Diamox do you take? How long have you been taking it and have you noticed any side-effects? That’s exciting that our symptoms are very similar so we can maybe help eachother. I am sorry you are also going through this though. It has been the hardest time of my life. Everything you said about your symptoms was so me. It sounds like you have a full house also and it makes it so hard dealing with all this. How many children do you have? I have hope we will get better! Are you on any support groups? I am so happy I found this site. Thanks again for sharing.
Take care!
I am taking 125 mg of Diamox 4 times a day. I think I started taking Diamox in August 2011. Side effects, well yes. My blood chemistry has been very acidic… we continue to play with the amount of bicarb I take, trying to find how much I need to take to stay balanced (labs currently pending right now) and kidney stones (had a CT last week and I have 3 stones in one kidney and 5 in the other, though I had a stone in each kidney prior to starting Diamox… but the rest are new.. yuck).
Yes, it is very hard being this sick and raising a family. I have 13 children, 10 still living at home (3 grown). I have learned how to run the house from my bed and the kids are great at helping me and each other! I feel bad though… wishing for my “old” self before I was so sick and was so organized and able to do so much! I’m a shadow of my former self it feels like.
I do not belong to any support groups per se, besides our church (they are a great support!). I have a couple of friends that are similar to me in their illnesses, so we support each other and our spouses.
I am also very blessed with a great doctor who reads all Dr. Diana’s research, then does his own, and is doing all he can to put it all together to treat me! When I found out about CCSVI, he did a lot of research and then actually came with me to where I had my CCSVI procedure (a 3 hour drive from where we live) and got to observe and talk to and pick the brain of my IR during my procedure. He is dedicated and very much wants to learn all he can. Plus, just having ONE doctor who doesn’t think everything is in your head goes a very long way.
I love this site and to finally find a place I feel I “belong” with all my illnesses, instead of just one of them. Sorry there are others that have the same constellation of illnesses (EDS, POTS, CCSVI, Mast Cell, etc.), but I sure appreciate knowing I’m not alone. And, then add Dr. Diana doing all she is doing to find us an explanation as to what the heck in going on in us AND treatments to help! Such a blessing!
Ourfullhouse-Wow that is amazing that you have so many children. What a blessing!!
That is wonderful that you have such a supportive doctor. My doctors over here really haven’t been any help and it is getting so overwhelming trying to figure this all out on my own. Having a church’s support would be so nice. I moved back here a year ago and have been too sick to go to church since then. I could go at night but, my symptoms are way to bad in the morning.
I have been trying to treat my symptoms the natural way and it has been really tough. My husband wants me to try some sort of medicine but, I just really don’t know were to begin. I am so afraid it’s going to make things worse. The main symptom I would want to treat is just feeling ill everyday. That feeling that’s almost flu-like and you have to lay down all the time. It’s so hard to explain to other people who aren’t sick or even a doctor. I really don’t want to take anything unless it is a cure. But, sometimes I feel like just give me something because I can’t take this anymore. I am just going to hang in there and be strong. Hope and pray it keeps improving and continue to study Dr. Diana’s research. I feel like I really need to try something else though being it’s been over a year now.
I haven’t hear of hardly anyone that has OI and not POTS. Other then Greg Page from the wiggles :)Thank you !
Hon, I am leaning toward your OI possibly being your first symptom of POTS (or perhaps your most prevalent). With myself, I noticed gastroparesis first, then OI. It was years before I began to notice the other symptoms and signs. Unfortunately, as time goes by, and without proper treatment, we can go down a spectrum of conditions over time. I will do everything I can to keep you from progressing, OK? That is what my research is for. A huge “thank you” to Palomino — yes, please start reading through The Driscoll Theory, Parts 1 and 2. Let’s get a jump on your symptoms and stop them dead in their tracks. OK? Big hug, Diana
Thank you so much for all your research I am very grateful! I am reading it all and trying to take it all in. My biggest question is if I had a normal brain mri does that rule out problems with cerebral spinal fluid? I do get a sore neck and shoulders all the time but, never would have related it to anything. My ears do seem a little watery in the morning as well. I have been treating my symptoms naturally for a year now and have made progress but, here I am a year later and a lot of my life consists of living on the couch. As all of us feel, I just want to get better for my husband and children.
If you don’t have time to respond I will understand, I just thought I should put it all out there:
I am 30 years old.
I was born with too many red blood cells and I know they treated it some how.
I have a huge history of extreme allergies and asthma as a child.
Teenage years I felt mostly fine.
Pregnancies were very hard on me and especially the second one. I now know that my symptoms were very OIsh. After pregnancy it went away. I then was hospitalized for a week with the worst case of mastitis the hospital had ever saw.
about 3 years later after extreme stress and feeling a little sick here and there I had a sudden onset of these OI symptoms. I was bedridden the first month and I have been sick ever since.My biggest symptoms are: Feeling ill everyday, nausea, light-headed,low blood pressure, fatigue,pre-syncope, headaches, optical migraines a few times a month, extreme sensitivity to heat, sensitive to the light, I also have bladder problems for over ten years now which I believe is probably IC but never been diagnosed. Oh and my joints are very hyper-mobile but, I do Not have stretchy skin.
My Dad has an auto-immune disease (reiter’s syndrome).
My Grandma died of bladder cancer.Also do you think any of the medications you mentioned in your book would work for me?
Thank you for your reply above as I know you are a busy woman. Hugs to you for everything you do! You are truly a blessing.
Hon, do you have Part 2 of The Driscoll Theory? Also, you may want to watch the new video about diagnosing hydrocephalus. YES! It is impossible to tell over the internet, of course, but it sounds suspiciously like EDS and autonomic dysfunction… You sound much like us! We are also VERY prone to UTI’s and IC. I’m working on IC right now! These are issues that M.S. patient’s have also, and when I had a UTI recently, my neurological symptoms (tremor, clonus, etc.) got much worse. I believe I understand what is going on and will start a registry so that we can all get the same blood work to prove this. Then the medication will be just a bit different.Cool? Oh, in neurogenic syncope, we may not see tachycardia upon standing. But it (and normal skin) doesn’t rule out EDS. Hang in, OK? 🙂
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