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Re: Dentist

Lynn, this is a site that shows some of the criteria for diagnosing hypermobility syndrome:

Beighton Score

Having Ehlers-Danlos also makes it difficult to recover from soft tissue injuries like whiplash because the ligaments are already too loose.

The main reason I encourage DNA testing is so that there will be a confirmed diagnosis in your records for emergencies and any surgery. You also need to have a medic alert ID with the diagnosis. It's crucial to have the correct anesthesia, and often doctors and anesthesiologists don't take the myotonia seriously if you don't have that proof.

That's nonsense about it being better not to know. And myotonia is treatable. Doctors say the dumbest things sometimes. The different types have different treatments (both diet and medication). And it's very important to many people to know the type for family planning. For instance the dominant form of MC has a 50% inheritance rate, but the recessive form is almost zero incidence of symptoms because it takes two mutations.

There was a time when doctors discouraged DNA testing because myotonia was in the same category with myotonic dystrophy for health insurance underwriting and many people either lost their insurance or were denied coverage even though they did not have MD. But I worked with the CDC to get the coding changed and that put myotonia back in the correct rating. Life insurance never listed it as a risk.

One other tip about the dental work...be sure you don't take any vitamin C for a couple of days before your appointment (it's fine to take it afterward. It strengthens the integrity of the cell membranes and makes them resistant to the effect of the anesthetic.

Jan

Type of Myotonia: Thomsen's

Country: US

Re: Dentist

Jan, Thank you for the Beighton Score link. It was very informative and I saw a lot of similarities in symptoms. I definitely am going to take this information to my doctor. I thought that part of reason I have been having so much difficulty since the auto accident is because of the myotonia, but possibly the hypermobility is an issue as well. At one point the pain, stiffness and muscle spasms from the injuries became so severe I started losing my mobility and was using a wheelchair. I quickly found out that the more immobile I became the worse the symptoms became. I found an amazing physical therapist and have been going for about 2 years now and am doing much better! I did have whiplash, spinal trauma and other injuries.

You are right about the doctors saying dumb things. I was also told by the “specialist” that I could be burdening my children with the knowledge if I decided to do the genetic testing for the myotonia. After all the research I have done and what you have shared I think it is important they know because they now have children of their own. Knowledge is power.

It is so wonderful that others with this disorder are willing to share their knowledge and what they have gone through to help others. Thank you Jan!

Oh and my dentist appointment went well. Thank you for all your help! My husband thanks you too.

Type of Myotonia: Unsure

Country: USA

Re: Dentist

Hi Lynn:

Is this a tooth on the bottom jaw?

My bottom jaw is notoriously difficult to numb, to the extent that they had to call in the leading dental anesthesiologist in the country to figure out how to numb me.

The trick he discovered was to do a mepivacaine nerve block, and then a septocaine infiltration around the tooth. Septocaine is also called articaine. I had occasionally had success with septocaine nerve blocks but not consistently, and septocaine nerve blocks are thought to be more dangerous because they are associated with a higher chance of permanent nerve damage should they accidentally hit the nerve.

They speculated that I was difficult to numb because either my nerves were not where they expected them to be, I had extra nerves, or I just metabolized the anesthesia different. They wanted me to get 3D imaging to determine the actual location of my nerves but I couldn't afford it.

Type of Myotonia: Becker

Country: USA

Re: Dentist

Hi Jenna,

Yes, the tooth is on my lower jaw. I have difficulty with getting any of my teeth numb, but my lower jaw is much worse too. Thank you for the information. I am still looking for a dentist that will help with this problem or at least listen to me. I am so glad that you found someone to help you.

Thank you again.

Type of Myotonia: Unsure

Country: USA

Re: Dentist

If you live near a university with a dental school you might contact them and see if they can get you in touch with a dental anesthesiologist. Surprisingly, a lot of general practice dentists arent up on the various dental anesthesia or drilling techniques. At the dental school here there are a number of instructor dentists who oversee the students. They are usually busy running around but one day the clinic was dead and four of the instructors happened to just be sitting next to the chair I was in. Three left to go do something leaving one, an older man, sitting there. My student dentist was having a hard time completely numbing me (because she didnt have the stuff the dental anesthesiologist said to use and couldnt get it as the dispensary hsd closed). She called the dental instructor over and after running down the list of things she already tried, he crossed his arms and said "Well then, I just dont know what else to do." At this point I had a partially drilled tooth and was thinking "What do you mean you dont know what to do?!?!?" Thankfully o e of the other denists then came back over and after learning of the problem, said "Let me show you a different way to do this that sometimes works." And he sat down and managed to finish drilling my tooth without causing me pain.

I've come to learn that denistry can really be more of an art than a science sometime.....and 9 out of 10 dentists cant actually agree on anything.

Type of Myotonia: Becker

Country: USA

Re: Dentist

Thank you Jenna! That is a good suggestion. I can relate to what happened to you with the dentist not being able to numb the tooth after he started drilling. Not a good situation to be in. So glad they were able to numb it for you. Thanks again.

Type of Myotonia: Unsure

Country: USA