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Lab-Scientist-LadyParticipant
Hi PhoenixDown,
I hate that the doctor did not check for the other types of EDD or some other genetic disorder. Maybe you have types I/II or type IV. Can you order a 23ME test? You can get the test kit online. Maybe that can tell you more info about what genes you carry.
Maybe you have something different than EDS. What are your symptoms? You need to go to different geneticist. The other one was piss poor if they can’t do anything else besides EDS. From what you said it sounds like they did nothing. I had a dermatologist preform a skin biopsy on me it it came back positive for a connective tissue disease. I also went to Dr. Diana’s husband for an eye exam and it showed the abnormal artery to vein ratio and the beading. I also score high on the Brighton scale. I am text book. I am seeing a geneticist soon . I have a lot of over lapping symptoms from multiple types. As Dr. Diana would say I am pretty ill.Sorry I am having trouble with my phone posting.
Lab-Scientist-LadyParticipantThanks for the replies, it wasn’t an ordinary doctor, it was actually an EDS specialist (one of only two centres in the whole country).
Did either of you get your diagnosis through genetic testing? Which types do you have?
I don’t think another doctor would have much to say, I don’t have any significant hyper mobility.
Lab-Scientist-LadyParticipantPlease check with your doc, but I looked at my serum B12 levels to start. Now I just inject some once in a while, and take a lozenge under my tongue a couple times a week. Although I’ve never heard of someone’s level being too high, I did research to be sure I could be a bit sloppy with it, and found that it is almost impossible to overdose on it (lucky for me!). As far as HGH goes, I’ve taken a lot of different forms — I’m on Omnitrope right now. They are all very pricey — about $400/month and you inject it subQ. Research is scanty, but at least one study showed that it helped pain of fibromyalgia. I initially started it just to try to maintain some muscle mass during menopause (which didn’t happen, BTW!). Now I see that it does seem to help with pain, and that was one reason I never had pain before! I thought I was just lucky. ha. Your doctor will help you figure out your initial dose, then retest. I inject it 5-6 days/week. They still think it is a good idea to take a day off during the week to maintain the feedback loop (so your body doesn’t stop making its own). I really can’t tell you if it is worth the cost, though, honestly. All of us seem to have “endocrinology gone wild” and it is TOUGH to get things stable. FOR SURE!
I am completely overwhelm for sure, and not being able to work makes everything worst.
Lab-Scientist-LadyParticipantOh, I also found that B12 helps with pain! Some pain doctors inject B12 into the joint (ouch). I prefer to keep my levels up systemically. 😉 This is expensive and not yet in the EDS literature (but it is in the fibromyalgia literature). Human growth hormone helps me. I started it 10 years ago as sort of an experiment to see if I could keep from falling apart at menopause, as I heard so many of us did. I kept my levels at the upper end of normal. I didn’t realize it was doing anything until I went on a trip for 12 days and didn’t pack it. OMG. After about a week, the pain in my back was horrible. Ironically, I was at the EDS conference and couldn’t even sit still. Needless to say, I went back on it as soon as I got home! You may want to have your levels checked. Thanks and hang in!
Dr. Diana,
Which level do I need to get checked? I take B12 and B complex and I do notice they help some. I started taking them because I take Metformin for poly cystic ovarian disease. Metformin raises homocysteine levels and lower B vitamins absorption. Plus I take Nexium, Zantac, and tums because I have severe GERD. They interfere with absorption too. Therefore, I have no idea if my levels are still normal or not. At one time my doctor checked and my B12 levels were too high. At least according to her. Can you have too high of a level when you are suppose to excrete the excess in your urine? With the HGH how to you take it? A long time ago I had my levels checked and they were at the low end of normal. I don’t know much about it? What does it do to help and how do I take it? How much is it? Which one did you forget to take on your trip? On I side note I have always had hormone problems. I get migraines and my pain is always worst right before my cycle. For example I felt better while pregnant in someways. Especially with my moods. I still take a lose dose progesterone only BCP to regulate my cycle and help with the homonal drop before my period. It does not help as much as I would like, but it helps with the migraines.Lab-Scientist-LadyParticipantThanks everyone. This really helps!
Lab-Scientist-LadyParticipantI agree you need to find another doctor. I have been to so many doctors in my life time. I could fill a football stadium. Only about ten percent of doctors are good doctors. The rest scooted by in school. Believe me I use to teach residents. Far to many are a doctor for the wrong reason. I am sorry you wasted the time going to a bad one. Find another. Make a list of all your symptoms and those of your family members. After all not everyone with EDS is hyper-mobile or show the hyperlastic skin. Try a dermatologist for the skin biopsy. That is what I had to do. Then they can refer you on to another specialist. Also remember that the skin Bx is not fully diagnostic, but it can help. I wish you all the best. I am new to all this EDS stuff, even though I have been sick and had all the signs all my life. It was me that went and showed my doctors what I can do and what all my life long health issues were. Sad to say but I had to take charge, and I will have to do it for my kids too. One day at a time, and sometimes one hour at a time. Good luck and keep us posted.
Lab-Scientist-LadyParticipantThank you Barbara. I appreciate it.
Lab-Scientist-LadyParticipantU don’t have to soak your whole body in the epson u can soak your feet and your body will still get the magnesium absorbed in. If u have diabetes u may not be able to use epson if not then go for it. Have u read the article on this website The Magic of Magnesium? Magnesium heals! It’s essential for EDS. I take it orally also. If u don’t mind me asking y the open abdominal wound? Also, don’t think like that that u will end up in a wheelchair or your mind will put u there. There’s hope! I know u don’t feel that way right now but u will especially when u get in that pool. We moved from California to Texas because we couldn’t afford to live in California without me working but we got a house with a pool and it’s helping me. I make myself get in it every day even if I don’t feel like it and I always feel better after. I can stretch and loosen my stiff body in the water.don’t give up in your mind or your body will too. God bless you!
I will try the foot soak. I have not read the article yet, but I will. I use Epsom salts on my roses and palms because the magnesium is good for them. I love to garden and it is becoming so hard for me to do.
When I started to have severe mobility issues 7 1/2 years ago I was told by my orthopedic at that time to move. We were in a two story and I could not handle the stairs. He told me to find a one story with a pool. I have always been a swimmer so I am thankful we found a house, and in our same neighborhood too. I can’t wait until I am healed and can swim again!
I recently had hernia repair surgery. The incision open up on me. It is actually the second time an abdominal incision opened on me. I did not realize until last month that it was because of my EDS. I am new to EDS, but I have been sick for a long time. Now it all makes sense.
Lab-Scientist-LadyParticipantI take Adcal D3 (effervescent) night and morning and, although over these last few years my level has improved and it’s a while since it was tested, I guess it is still at the low end of normal, as I still have stinging bone pain.
Yes it’s so sad you’ve had to suffer all these years, you do get to a stage where you think, ‘what’s the point?’ as far as doctors are concerned. I don’t get it, to become a doctor you need a higher level of intelligence and a certain level of ‘staying power’ to undergo such lengthy training in the first place, yet having achieved this accolade of worthiness, when faced with a complex case, difficult to unravel, many of them just can’t be bothered – have they used up all of their conscientiousness during their training, or is there just no incentive for them to deal with it ? They get paid anyway and they get paid well enough, it’s a pity their pay is not performance related, now that would sort out the real wheat from the chaff. What happened to all the ‘House MD’s’ of this world ?
For now, we have to be our own advocates and Look, Listen and Learn, as they used to say at school. No doubt you will have developed coping mechanisms along the way, like many of us, that have helped you get by, we all need to share these and read, as others publicise theirs and make the necessary adjustments to lifestyle for maximum comfort.
I know it’s so difficult when you’ve children to look after and my heart goes out to all of you in this position. So, if this is you, try and get your children involved, look for little ways to make chores fun, like see who can pair the most socks and silly stuff like that, or something they may be curious about or like doing, like ‘weighing’ out the ingredients for a cake, or rewarding, like once they’ve changed their bedding they can make a fancy ice-cream sundae, etc. If you can ‘offload’ some of the menial energy consuming tasks, so all you are doing is supervising, hey your kids are learning to look after themselves and you are getting (a little more) rest.
Barbara
(UK)Thanks again Barbara. I appreciate your help. It has to be the middle of the night in the UK. It is so cool to be able to talk with others in far off places. I work in the medical profession and for years taught medical students, residents, fellows, and medical technology students. It is said to say that the next generation of doctors do just what they need to get by. Very few go the extra mile. Probably close to 85 per cent could care less about being a good a doctor but more about the status and the money. The sad thing is a good doctor does not make a lot of money for the amount of work involved. As it is said what do you call a doctor that finished last in medical school? Doctor! Whether you are first or last you graduate. It does not look good for the school if their pass rate is low. I have gotten better at picking good doctors, but even if you have a good eager doctor in the beginning the real trick is if they stay that way. I just went back to my rheumatologist last week and it was a 180. She was a great doctor the first time I saw her and this time she was awful. A complete waste of time and money. I left in tears.
I think in some ways I am to blame for doctors not diagnosing me. I can’t possibly bring up all my symptoms in one visit. Because of my age and my lax ligaments I went to a dozen orthopedic doctors before I found one who wanted to help me. The rest saw me a huge liability and a risk. After all they don’t want to be sued and they could tell I was not an easy case. I started eliminating things from my medical history so I could get seen. For example I never mentioned my orthostatic intolerance, my heart murmur, irregular heart beat, chest pain, or that I had extensive orthodontic and periodontal surgery. I never knew that my flexibility was abnormal. I did show my orthopedic some tricks after he mentioned how lose I was. His mouth almost dropped to the floor. However, no one has looked at my abnormal scaring or lose skin along with all the other signs. The biggest problem I think is you go to one doctor for dermatology, one for pain, one for orthopedic, etc. Therefore, no one doctor looks at the big picture of your overalls health. Doctor are always running late always overbooked, so therefore pass you one to the next doctor. No one doctor stops and says “hey! let me be the one to help this patient “. They assume the next doctor will do that instead.
I do put my kids to work. Although my son is the only one that helps much. My other kids are 1 & 2. Their helping is different! 🙂 and not always helpful. They keep me going. I have to be here for them. Even though it is in a quite limited state.
How long have you been disabled? Do you have kids? Do they have EDS too? I am sure my kids do. I meet with a genentist in August so I hope she can help me and my family decide what type(s) we have, and what other defects we have.
I have EDS, orthostatic intolerance, asthma, severe degenerative joint and bone disease, depression, heart murmur, gall bladder disease and removal, hernias and hernia repair, had a brain bleed and other bleeding problems/ brusing, TMJ and other orthodontic and periodontal problems, arthritis, GERD, poly cystic ovarian disease. So maybe what you mentiond about HRT would help. The PCOD affects my hormones and I have had problems since I was a teen. Most symptoms became worst as a teen. As you see the list is long and there is even more. It is overwhelming to say the least.
Lab-Scientist-LadyParticipantThanks Barbara,
I do take vitamin D3 for that very reason. How much do you take? I also crave salt and so does my mom. We also rely heavily on caffeine. My mom drinks coffee all day long. I tell my husband all the time that I don’t feel well and I need salt. I love pickles and just about any thing with salt. It is funny how our bodies compensate with cravings to get what it needs. I have had orthostatic intolerance ever since I was a teenager. I mentioned it to one doctor when I was a kid and he blew me off. So I have just dealt with it and never mentioned it to any current doctor. It is sad how many things I have just ” dealt with”. About a month ago is when I sat down and listed out all my symptoms and those of my mom and kids. That is when I realized, FINALLY, that I have EDS. I have been clinical diagnosed, but I am waiting on a geneticist to tell me my type. I assume type III, but I have skin and vascular involvement too. I even had a brain bleed in 2007. I can’t tell you how many times I wished I had just died with it. I even delayed going to the ED, because I did not have anyone to watch my child, so I guess it is amazing that I did not die. I was left debilitated for 9 months and with a headache I never thought would go away. I can’t believe how many doctors will say “I know something is wrong”, but they did not want to take the time to figure it out. This year I have had bilateral total knee replacements and abdominal surgery. They were not successful for helping my pain. Now that I know that I have EDS it explains so much. I am very new to this and I am overwhelmed. I am not entirely sure of what I need to do next. I have been pretty ill for a long time, and I have just dealt with it. Unfortunately it is beyond the just live with it stage. My mobility and pain issues are debilitating. I kept thinking I would be able to go back to work, but I realize at this point I am unable. In the last seven plus years I have gone from being a fun, active, productive member of society in to a person that relies on others for help. I still want to do things, but my body won’t let me. It is hard to accept my new normal.Lab-Scientist-LadyParticipantDr. Diana,
Where did your hubby buy the pillow?
Lab-Scientist-LadyParticipantThanks Barbara,
I have the same problem. It hurts no matter what, and that is the most frustrating thing about it! I will try to find one of the pillows everyone uses. I have tried the heat and cold too, but all it seems to do is create a distraction. I hate that it wont let up. I too am trying to stay ambulatory. I know I will one day be in a wheel chair too. It is hard when your body is falling apart.
Lab-Scientist-LadyParticipantDr. Diana,
I have not asked my pain management doctor yet for more pain control, but I may have to soon. I think he worried that I am only 37 and I will be on pain management for life. I actually saw him today and I told him about having been clinically diagnosed with EDS. He knew what it is and said he has several patients with it. He did suggest I go to a group counseling session for pain distraction. He thought it might help so I don’t feel so alone. Have you done this? I already try to distract myself, but there are times when I am totally miserable. Those times are more frequent than not.
Lab-Scientist-LadyParticipantI am tired of being told there is nothing you can do about it too. If the doctors were in our shoes and saw what it does to us and our families, maybe then they would care. All they have to do is spend 5 minutes with you and send you on. I even had one doctor tell me that I was too much for him to handle and not to come back. It was the first appointment I had with him and I had spent hours filling out his paper work. Doctors no longer care, and see us as a liability. I had doctors tell me that they knew I had something wrong, but it was too much work for them. I have been passed around from one doctor to another.
Lab-Scientist-LadyParticipantDr. Diana,
I tried going to the site, but you have to be a resident or a surgeon to get the membership. Plus it is expensive. I don’t even pay for my American Society for Clinical Pathology stuff anymore. They charge too much. They should want us to know the info with out making us pay so much. No wonder doctors don’t know much about EDS.
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