By Sara on Sunday, June 04, 2000 - 05:25 pm:

Does anyone else have problems with local anaesthetic? Local does not work for me. My doctors have told me this is due to the abnormal collagen structure caused
by the EDS. If anyone else is like this, and has found a local anaesthetic that works, or an alternative, I'd love to know. BIG hug to everyone out there.

By Sue C. on Sunday, June 04, 2000 - 05:25 pm:

Been there. Felt that!

I've found that some topical anesthesias work, but forget Novacaine!

We wary of any anesthesias and inform your anesthetist. I wanted to avoid the horror of having 4 permanent teeth removed virtually without anesthesia, so I opted to
be asleep for the wisdom teeth. I woke up during it! Fortunately no pain, but it scared the doctor and I went back under with more medicine in my body than I really
needed.

By Gwen on Sunday, June 04, 2000 - 05:26 pm:

A well documented phenomenom in EDS people. Look up http://www.ednf.org There is a very good article on that website on exactly this topic.

By Selina on Thursday, July 06, 2000 - 10:05 pm:

I have HMS; I wonder if it is EDSIII. However, I do respond well to local anesthesia at the dentist- does that mean I don't have EDSIII? Or "probably" don't?

I'm getting my wisdom teeth out in 7 days- I've never had such an invasive procedure done. I hope the local lasts for the entire procedure! aaagh

Selina

By Bianca on Friday, July 07, 2000 - 10:40 am:

What is the difference between HMS and EDS III is a very lot discussed thing also by specialists.
I know there is one theory saying that the difference is between responding to Lidocain (local anaestheticum) or not responding to Lidocain.
Then there is a theory which says that the difference is between having skin involvment or not ( easy bruising, very slow wound healing).
Then there is a theory which makes the difference between having hyperextensible skin or not.
I think we will really know it when we have found the responsible gen or like I think there will be a group of responsible genes. When we know them we will maybe be able to say this gene defect causes HMS and another gendefect causes EDS III.
Up until now we have to look which expert we are speaking to and what we believe ourselves.
But I think for us it is not a big difference whether it is HMS or EDS III. The only point is that I think that EDS III sounds more like a serious disease for most of our doctors while most of them find that HMS is not such a serious story.

By Yonia on Friday, July 07, 2000 - 11:21 am:

You are so right Bianca, I really hate it. The difference between EDSIII and HMS is so small that most of the time it can't even be properly recognised but when some doctor who thinks he can distinguish between the two of them has labled you HMS you have to stop complaining and asking for attention because you are 'only a little loose around the joints' but when you are labled EDSIII you are ill so you have at least some rights to being taken seriously (still not as much as you should be). Can we please get a little realistic here! My joints are a mess, I am in pain, I can't do what I want to do, and should do at my age. Frankly I don't give a sh*t what some overpaid doctor thinks he should call it. (I realise some EDS-types are a lot worse than HMS) Still I am playing the game called "diagnose me", because at the moment I am neither a HMS-patient nor an EDS-patient, and I am entitled to no medical care whatsoever since nobody has ever labled me anything else than "generalized laxity of the ligaments, causing various problems" and "tendency towards overall hypermobility which results in a walking-disorder". Yeah? wanna see my writing-disorder, my swimming-disorder, my cooking-disorder? Putting it that way I even have a dishwashing-disorder not to mention my kissing-disorder. Still I am not ill because my illness hasn't got a name.
Sorry if I offended anyone, I am just so ANGRY.

By Gwen on Friday, July 07, 2000 - 02:47 pm:

Yonia, be angry! Don't be passive and wimpish. It is only by being constructively angry that you will get a diagnosis. Browbeat every doctor you see. Demand answers and explanations. Demand to see what has been written in your file. If you aren't satisfied with being fobbed off. Ask around until you find a doctor who knows and cares or if s/he doesn't know is prepared to make the effort and find out.
Become well informed by reading articles published on various websites. I especially reccommend http://www.ednf.org and http://hmsa.freeserve.co.uk but there are others also. Make copies and take them with you. Ask the doctor how much s/he knows about hypermobility and if it's not a lot then ask how much they are prepared to find out. You might mention that you don't feel confident being treated by a doctor who knows less about your condition than you do and see what effect that has!
It is only by being assertive that you will get the doctors to accept you as someone who isn't prepared to give up and live a half-life on pain killers and anti-depressants.
I frequently argue with my doctor and we disagree on many aspects of diagnosis/treatment but he now treats me as an intelligent women who knows what she is talking about rather than a middle-aged neurotic.
Hyper Mobility Woman defeats the powers of Ignorance and Apathy!

By Bianca on Saturday, July 08, 2000 - 09:32 am:

Yonia, I understand you.
Last week I wanted to donate some of my blood like always before. I went to the donation center-and I was open about my ankle problem. So I had to go to the doctor of the donation center because they were not sure whether I could donate blood or not. It was very interesting. The doctor looked at me. He was informed about HMS. He asked me about my heart ( Prolapse of a Mitral valve) and so on. But he looked to some of my joints and found that I am not so hypermobile, he looked to my joints (elbows, thumb) that are really not so hypermobile. Then he wrote something on my dossier about chronic ankle pain, but nothing about HMS.
Other doctors like the doctor of my employeur's insurance looked at me, did not found me so hypermobile. When I showed him some texts from professor Grahame he told me, that I should not thinking about having HMS. This would only be bad for my mood and my psyche.
But I think I know what I have and I try to argue quietly like Gwen. Okey when it is one like this insurance doctor you can't help them, but with the doctor from the donation center I had a good discussion about chronic inflammation and the ways how haematologic doctors would diagnose the problem. Of course he is one who said openly to me: "I don't find you so hypermobile, but your rheumatologic doctor is the specialist and he knows to diagnose HMS better than me."

By Carole Ehlers on Tuesday, July 11, 2000 - 11:54 pm:

Yonia,Gwen,Bianca,Sue,

Hi! I am new to this forum. I have not been diagnosed with EDS yet, nor the type. I go Aug. 2 to the Genesist because my Rheumy. Doc had no idea on how to diagnose me, he just heard of the syndrome and my last name is Ehlers, go figure! I have spent a considerable amount of time gathering info off the internet and calling the various foundations and such. I have come to the conclusion that it is highly probable I have EDS III/HMS. I think they are one in the same. The reason I feel this way as I am in a Family of six children in which ALL show symptoms of EDS in different ways. Some symptoms overlap, some are more severe than others, some show up hardly at all until more tests can be ran. My eldest sister has been diagnosed with Fibromyaslia(sp?) and to me has all symptoms of EDS III; I have it less severe and they might diagnose me with HMS; my eldest brother has all the syptoms of the Eye EDS besides the common symptoms; my Mom, the classic type; so how can they group us into one neat catagory when those rules don't apply to our Family but we ALL have real signs of EDS? This Syndrome has been around FOREVER! No one seems to have a clue much about it and no one seems to care to push it to the top of the list. It is hard to diagnose even by those who are suppose to know about it.

My family has another genetic disease called FAP, hereditary colon cancer. I have learned that medicine is not an exact science. "They" told my Father that ONLY the oldest child would get FAP, since it had rang true in his immediate family at the time he believed it. He has since died from FAP but not before finding out that 5 out of 6 of us have FAP! I don't believe much of what "they" say anymore. I research and spent as much time finding out as much as I can, like finding sites like this. I print out what applies to my symptoms and take them to the doctor. The EDS Foundation sent to me some information to give to my Rheumy. Doc. and he was thrilled to get them. I'll keep him for now but if I find him lacking in my care I'll trade him in for a better model!! It's my health and I have come close to loosing it and I will not do that ever again. I am attending the EDS Conference in the USA this year so I hope to be well informed after that. Knowledge is powerful, but most importantly the right knowledge is more powerful. I have hope with the mapping of the genes we will no longer need a site like this, except to reminisce!

I hope you don't think I am a hell raiser, my husband does, so what if I am? If things are better because of it then it is worth the title!

Thanks for listening - Carole Ehlers

By Gwen on Wednesday, July 12, 2000 - 02:49 am:

Raise Hell and your husband's opinion be buggered. It's your health and your children's health you are concerned about. Your husband obviously doesn't have EDS/HMS or he'd understand what you are so concerned about. Maybe you should consider trading him in on a better model instead of your rheumy doc (LOL)
I'm fascinated to learn that your family displays so many different symptoms. Have you checked out http://www.hmsa.org? There is a section there on mapping the gene for hypermobility. I would think your family would be God's gift to the researcher.
Good luck and welcome to the forum.

By Carole Ehlers on Wednesday, July 12, 2000 - 05:39 pm:

Hi Gwen!

Actually my Huband knows not to cross me when I have a bee in my bonnett!! And he is truly a wonderful man but has not had to deal with someone like me who has so much on her plate and his father is a doctor so he has a hard time when I blast the profession. I think I mislead you to think I have had children. I have none, two miscarriages (one I had last month) and one etopic. Now I know it is EDS that could be causing this.

No, I had not been to that site before and will be searching it for more info. thanks for telling me about it. I am not sure what to think about this division between HMS and HEDS. I will find out more at this EDS Conference in a week. My family thought we would be God's gift to the researcher with five FAP children but no there was a seven sibling family all with FAP! Since EDS/HMS is so new to me I am not sure what to do about my family. There are six of us, three girls, three boys. I am number 5 and I only found out about EDS by having the last name Ehlers. It gets weirder, my husband's father is a colon-rectal surgeon and specializes in my type of surgeries. Weird or what? My husband and I met at an accounting firm. I was the Librarian!! He was a Tax Accountant!! Talk about God giving me a sign, more like a kick in the butt! We dated a while before I even knew who his father was. Now this! It really boggles my mind.

I will be the first to go for genetic testing. When that comes to pass then I will give the results to the rest of the family and we begin from there. We are scattered over the US and finding and affording testing will not be easy. Insurance is the true enemy and my niece had a real hard time when she got leukemia. You know how the snowballing effect can happen and having one more thing to deal with makes them all want to just give up. I take the task head on because I am a hell raiser and fight half the battle before the family gets involved. Maybe I do this for my own benefit because I enjoy righting the injustice, but as always I get worn out. Spirt willing, flesh is weak. But as my father always said "Carole you are slow but sure". I made a good Librarian.

I will let you know the outcome of my G testing if you are interested. Do you have any questions you need me to find out about at the EDS Conference? Let me know.

Once again thank you for your support and listening to me spill my guts (the little I have left- HAR HAR!).

Carole Ehlers

By Carole Ehlers on Wednesday, September 13, 2000 - 12:09 am:

Yonia,Gwen,Bianca,Sue,

Well, it has been two months since I last posted my message and I thought I would let you know what a rollercoaster I have been on. I went to the US Conference and found people just like me and my family. It was unbelieveable. I hope your UK Conferences are as helpful and wonderful as mine was. It took a while to adjust to all the info. they throw at you but it was great to have conversations with people who knew EXACTLY what you were going through and knew what to do. What I found out what would work for some might not work for others and that is because we are all different. Since my diagnosis of EDS with the Geneticist, I have 6 new doctors. I am going to a hand therapist, and to a physical therapist. The new docs are sending me for tests and they are a pain!!!! Especially when my blood is being taken. I have no veins left. I had to wait for insurance approval before they could take a skin biopsy to rule out type 4, but they took one from me today and they used a NEW LOCAL on me called Marcaine. I totally numbed up, had no allergy, felt nothing. I do not know if it is sold elsewhere. It stings while going in but no problems afterward and it is long acting. Has anyone else used this? I hope you can find it where you are. I am the talk of my doctors' cocktail hour because of my last name. They all think it is weird that my last name and my syndrome is the same. So glad to be the topic of conversation, let's just hope the word EDS is being recongized more often and diagnosed earlier, then I will feel as if this last name served a purpose. I am now having most of my new tests done under general anaethesia as the locals that make most people sleep do not make me sleep or I wake up during the procedure. I am glad these support boards are here. Even if no one replies I feel better just writing this down so someone might gain from my experience. E-me if you have any questions about Marcaine.

Hope you all are doing well and are in good health.

Take care,
Carole

By Pat on Wednesday, September 13, 2000 - 09:34 pm:

Carole
Where in the US are your doctors located? I need to get my son or my cousins in to a good doctor so we can have some idea what we have. We, too have a slew of different mainfestations - 19 units of transfusion after the hysterectomy is the gravest. We have high palate, sunken chest, loose joints, bruising, soft skin, bladder diverticulum, etc. Family seems to live to be 80 or more, so I don't think it is Type IV. We originally thought it to be III, but I don't think so anymore. Probably Classic. There are no doctors who know anything except to say that we have it in the Philippines where we are working right now, but my son is in the US. We'd like to get him seen by someone who can help him with his joints and pain.

By Carole on Wednesday, September 13, 2000 - 11:58 pm:

Pat,

You need to visit these sites :
1. www.ednf.org
2. www.ceda.ca
3. www.atv.ndirect.co.uk

In #1.EDNF click on articles, read them well. Then click on favorite links, on that page click on the Marfan Syndrome, then click on National Marfan Foundation. I want you to read the symptoms there also. Do not panic. You have to remember these sites will carry the worst case scenario and it hopefully is not as bad as it seems. I live in the Los Angeles area. Where is your son located? To find the right doctor, this is where the struggle begins. First you have to find a doctor who will listen to the possibility you might have this "rare" syndrome. Then get a referral to a Geneticist who has diagnosed more than ten EDS people and had good training, believe me I asked and grilled this poor doctor but she respects me. The EDNF can help also. Linda is a very kind and helpful person. You can e-Mail her directly from the EDNF site. I found out about my EDS through my Rheumey Doctor. He says that Ehlers-Danlos is NOT a "rare" syndrome and he sees lots of EDS. Is there US Doctors in the Philippines were you are? Are you near a US base? Is there a base still there? I have a Philippine GP here in California. I could ask him about a good doctor over there. He was shocked that Geneticist said I had EDS. He would not believe it. I had to remind him that when he went to medical school there was only one type of EDS. This is why we have specialists, there is much more information known on these "rare" diseases than when some of our older doctors went to school. Rhematologists are the EDS docs of the future. At least we are shoving them into the role.

You bring up a point that most EDSers are not aware of either and that is one can have a mild case of EDS 4, or I should say Vascular. That is why the ONLY way to rule out type 4 is with a skin biopsy. There is proof of mild cases of 4 and if anyone needs that proof ask me and I will send them on the internet trail. My mom is 72 this friday, her sister died at 53 from a brain anuerysm, her brother died-lung cancer, her other brother is a live but has medical problems. Nothing to unusual. My aunt and her brain anuerysm was enough to send up a red flag. Also classical can have anuerysm problems too. I know it doesn't say that online but I went to the EDNF Conference and two doctors who spoke there said classical can have anuerysm problems. So getting the right medical attention is crucial. I talked to alot of 4's while I was there and they came to the conclusion getting an MRI or CT to identify where or if the are problems will help if an emergency arises. They carry medical alert braclets identifing where the vascular problems are so the ER docs know what to look for right away instead of fumbling around in the dark. I thought this was a smart and empowering way to handle a very scary and uncertain future. I may be in that boat and if I am I will certainly do what they have done. I hope this has been helpful to you and if I can help with anything else let me know and I will try.

Take care,
Carole

By Susan on Friday, September 15, 2000 - 10:15 am:

Carole:

What is the name of the Dr. (geneticist) you are seeing in L.A.? I am in San Diego and my orthopaedic surgeon thinks I have EDS Type III. He sent me to a very old and unknowledgeable rheumatologist who thinks that I simply have HMS. He only seemsto know about the classical type of EDS and had no idea what Type III was. I have always bruised very easily, and have not responded to the 5 surgeries I've had thus far, the way an HMS patient might. I also have found that local anesthetic has little to no effect on me during surgery to remove my wisdom teeth. Help!!

Thanks!
Susan

By Carole on Friday, September 15, 2000 - 07:28 pm:

Susan,

Hi!, Fellow Southern Californian. I went to see Dr. Schuener at Cedars. They have a fab program and are very good at assessing the problems. According to them the difference between HMS And EDS is the skin issues, being that HMS doesn't have the skin issues. But after reading this board I wonder if I lot of misdiagnosis is going on? But I need to read more messages to find out for sure. Have you hit the all the EDS sites? If you match any of those, and ESPECIALLY if you are dislocating AND having skin issues, along with all the rest of the criteria I would get into Cedars or UCLA ASAP. Click on my name, in red, and it will take you to my e-Mail and I will send you the address and phone number. BUT think before you get a diagnosis. Getting life insurance and disability insurance before you get diagnosed is crucial. They can deny you insurance based on your diagnosis or sometimes if they are pushed into a corner they will say we will cover you, now that will be 15,000.00 a year!!! Scum!!! Rats!!! Greedy!!! But unfortunatly it is the name of the game. Make sure there is no mention of EDS in all your charts. They will know your doctors thru health insurance records and your doctors will have to give up information based on the laws. So do what they always say before we leap into the unknown "get your house in order" then leap. I hope you remain brave and do what is best for you and your family in the scheme of things. See a younger Rheumey and print off the New Noslogy from the US site of EDNF and take it to your new Rheumey, also the role of the Rheumey Doc. in the articles page of the same site is what I gave my Rheumey and I think he was shamed into agreeing with it!! I hope to hear from you soon and hold tight your almost there.

Take care,
Carole

By Barbara on Wednesday, November 21, 2001 - 12:09 pm:

Locals don't work for me at all.

Locals don't work for some patients with Hypermobile type EDS. See the following article:

Patients suffering from Ehlers-Danlos syndrome type III syndrome do not respond to local anaesthetics
http://www.ednf.org/articles/ps_suf.htm