andybonse Posted August 30, 2013 Report Share Posted August 30, 2013 Hello guys,Sooo, seems I have pots and mcad with ehler danlos type 3...I guess Ill have this for my life! Kind of ***** to know my future wont be what I expected however.Im not on treatment yet so Im hoping for some improvementAny suggestions? Quote Link to comment Share on other sites More sharing options...
davecom Posted August 30, 2013 Report Share Posted August 30, 2013 Hey Andy,Sorry about the diagnosis. How did they arrive at the EDS diagnosis? You mentioned before that the doctor was impressed that you can do a reverse prayer pose...How did he diagnose the MCAD?I'm curious how doctors are looking at this stuff in the UK. Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 30, 2013 Report Share Posted August 30, 2013 Andy,I know hearing this news is overwhelming but there is some hope. Dr. Francomano, who is considered one of the top experts here in the US and my EDS doc, talks about her 5% theory. If you can figure out a bunch of small treatments, lifestyle changes, and new habits that each reduce your symptoms by 5%, you can eventually put together a program that adds up to a 75-85% reduction in symptoms and /or severity of symptoms. For example, she has her EDS patients that have a lot of joint pain take Epsom salt baths several times a week. If you have migraines, she suggests also doing a couple extra Epsom salt foot baths to absorb the extra magnesium to help with the migraines. She sends us to physical therapy, in particular myofascial trigger point release (especially dry needling if you can find a good practitioner.) She tries to keep up with our treatment for dysautonomia if we are seeing specialists for that and same with our mcad. She also has sent me specifically to a sleep specialist to work on my sleep architecture since mine is particularly screwed up. A good night's sleep would go a long way. She also prescribes a compounded topical pain cream which I can't even remember what all it has in it. So, back to the 5%, if you consider each of her things and add them to each of the things the other docs are doing, the assumption is that eventually, I will feel considerably better. I have made improvements. My biggest challenge that we have not found a fix for are my orthostatic reactions and exercise intolerance. But we continue to work on it and I believe there is still a hopeful outlook. Chin up. :-) Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 31, 2013 Report Share Posted August 31, 2013 Hi Andy,That's quite a diagnosis. I'm sure you will be glad to get started on some medications to relieve some of the symptoms. On the ED type 3, have you always had this or did it just happen gradually or all of the sudden? The reason I am asking is because my son within the 8 months has become really flexible. I'm trying to figure out if this happening because he is growing or is it something that is related to this condition.Rachel Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 31, 2013 Report Share Posted August 31, 2013 What are your mcad suptoms, if you have any? Quote Link to comment Share on other sites More sharing options...
okiedokie123 Posted August 31, 2013 Report Share Posted August 31, 2013 Hey Andy, I guess the bright side to that is that you now know what you have while you're young. So you can arrange lifestyle modifications and adjustments to make things easier on you as you grow older. I would say it's better to know what you have when you're young so you can take action as opposed to finding it out much later in life. Also, I wouldn't automatically suggest that things are going to progressively get worse from here on out, there could be much hope for the future as the medical field recognizes dysautonomia more and more. That or one day we might just be able to transplant our brains onto robotic cyborgs and escape dysautonomia once and for all. Quote Link to comment Share on other sites More sharing options...
issie Posted August 31, 2013 Report Share Posted August 31, 2013 Andy, I've had POTS, MCAS and EDS for life. My first rememberance was when I was 8 years old. I've traveled a lot and been places out of the country. I've experienced and lived my life to the full. I've seen a lot, done a lot and will continue to do and experience new things. Looking back on my life - there is very little that I haven't done that I wanted to do. There are ups and downs. Good times and not so good times. But, only you can stop yourself from "LIVING" your life. You can be whomever you choose to be and do whatever you choose to do. Don't let anyone tell you any different. I've nearly died a couple of times and have had a lot of illnesses and surgeries. It changes how you look at life and what you feel is important. Don't let any day pass that you don't find some happiness or something to appreciate in your life. We can worry about the "what if's", and think of the "if only" ---but, realistically that only amounts to what we think up in our heads. We can't possibly know any of the answers to any of those questions. But, if we don't take a single day forgranted or the people in our lives that we love forgranted ---we can have a full, long, happy and productive life. This is not the end of the world and is only the beginning of a journey. Look at life as a journey, with lots of twist and turns ---but, always an adventure. You will be just fine. There are many of us that have lived long, fulfilling lives with these things. You can too. Something I wrote that I try to live by is this: Don't think about how it was, before ----that was yesterday. Look forward to tomorrow Think about what you can do "GREAT" today. We can't undo or redo yesterday, We can LIVE today And we can DREAM for tomorrow. By Issie Life is all in how we look at it ----the glass is neither half full or half empty. It is always full and overflowing. You see whatever we may see as half full---the other half in the glass is air and is overflowing even to the outside of the glass. So, the glass is always full and overflowing. Also, something written by Anias Nin that I like: We Don't See things as THEY are, We See things as WE are. It's not necessarily the way things really are ---it's our perception of what they are. You will be fine - as will the rest of us. Life can be full. We just have to be determined to make it that way. Issie Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 31, 2013 Author Report Share Posted August 31, 2013 My MCAD symptoms are: Mark very easy like my back if you scratched it, lots of red lines for ages. Heat triggers off histamine in my heart and causes blood pressure to drop causing emense tachycardia and angina, only when stood up though, so sitting down for a bit deals with it, not treated yet either.MCAD is diagnosed through symptoms and then blood tests and possibly bone marrow, depending on the blood results.Thanks Issie, I've decided, if treatment doesn't get me walking around and doing things, Ill use a wheelchair and I will do what I want and go where I want, Ill still go to the pub and have a drink or two providing I wont be standing up for ages hehe, I like a drink and im not going to let this stop me having one now and again.I guess im in the stage of acceptance and why, im so young, i never had this i was fine etc etc, the usual crap that im now getting out of. Quote Link to comment Share on other sites More sharing options...
issie Posted August 31, 2013 Report Share Posted August 31, 2013 I've also found that going gluten and dairy free, makes a big difference. So, no more Shandy's (beer is wheat). Issie Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 31, 2013 Report Share Posted August 31, 2013 In the FWIW category, there are a couple of docs who are recognizing this whole complex for those of us with EDS-HM, POTS and MCAD. They are starting to realize that maybe it's not just coincidence that we have all 3 of these and are starting to do some studies of those of us with this complex of symptoms. So there is hope for the future. Hang in there! Quote Link to comment Share on other sites More sharing options...
issie Posted August 31, 2013 Report Share Posted August 31, 2013 In the FWIW category, What's this Chaos? Issie Quote Link to comment Share on other sites More sharing options...
Chaos Posted September 2, 2013 Report Share Posted September 2, 2013 FWIW- For What It's Worth Quote Link to comment Share on other sites More sharing options...
issie Posted September 2, 2013 Report Share Posted September 2, 2013 FWIW- For What It's Worth Ha!Ha! Of course, it's not some exotic, new catagory. Needed that chuckle. Can you give us a preview of what they are thinking for the trilogy? Issie Quote Link to comment Share on other sites More sharing options...
brethor9 Posted September 3, 2013 Report Share Posted September 3, 2013 Hi Andy Sorry to hear about your diagnosis ..........I am also part of the MCAS/POTS/EDS club..... (my MCAS triggers are similar to yours).... the diagnosis of EDS recently was the last piece in my puzzle. I just wanted to say try not to despair it does get easier to cope. Through different treatments I have managed to go from being bedridden to being upright and mobile most of the day. I am not able to go to work and am far from 100% functioning but when I look at how far I have come my outlook is more positive. You cannot let this illness get the best of you.......I have learned life goes on around you whether you have it or not; adaptation is key. In some ways I am grateful...this illness made me take stock of my life, get rid of all of the negativity and toxic things and enjoy what's really important You can still reach your goals in life..... don't give up!Bren Quote Link to comment Share on other sites More sharing options...
andybonse Posted September 5, 2013 Author Report Share Posted September 5, 2013 Thanks for all replies!I am having hope that when I try Midodrine, I will get some decent results. Since my HR only usually goes up to 100 good days bad days 115, im hoping the constriction will stop the reflex tachycardia as blood pressure wont drop as much when i first stand up and the vessels will be tight enough to keep a decent blood flow!We will see! Quote Link to comment Share on other sites More sharing options...
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