I also have SJS

[Georgia DeLong]

My name is Georgia and I am 67 years old.  SJS wasn't even in the medical books when I was growing up. I was originally diagnosed as having muscular hypertrophy (another name for chondrodystrophic myotonia) when I was 5,  When I was in my late 20's my primary doctor recommended I go to a hospital here that teaches medicine to be re-evaluated. Up until then there was very little to be known about my condition. I went to see a neurologist who recognized my symptoms and diagnosed SJS.  I was given medication to help with the myotonia that I considered a miracle drug. My muscles became more flexible and 1 could walk without stumbling and falling.

I am retired now but worked for 42 years, 37 of those years were with the Federal Government. I have 3 siblings all younger than me and all normal.  As I have aged I have learned how to handle my condition. I also am able to explain to new doctors I have to see what to expect, especially if surgery is involved.

It is my pleasure to find out how many of you there are out there and am willing to share my life's experience with any of you who may have questions.

[SIRLENE GÓES]

Hi Georgia,

It is nice to hear that you are 67. I’m 29. I was diagnosed when I was 8, but here in Brazil no medication was given to me.  When I was 17 I was medicated with carbamazepine around two year and it helped to make my muscles more flexible. In my case, it didn’t work as a miracle, but helped a lot.

My sister was also diagnosed with SJS, she is 35 and she has osteoarthritis in the elbow and knee, it’s in an advanced stage. Sometimes she feels a lot of pain in her elbow  and she needs medicines and  physiotherapy. I also have a brother older than me and he doesn’t have SJS.

Have you ever suffered with arthrosis or osteoarthritis?

Did you have problems/complications during surgeries? What kind of problems? I made some surgeries but everything was like expected.

Sometimes I’m afraid of stop walking… Can you still walk without a cane or crutches?

Sorry if a made mistakes in my writing, my English is not that good. J

Thanks in advance!

[Ana Viveiros]

Ola Silene. My Claudia is almost 19 and she has SJS. She does not walk without a walker or wheelchair. Mostly wheelchair. She is beautiful and is on Facebook @ ClaudiaaQtee. We, her parents are both of Portuguese dissent. Did you have wisdom teeth removed and any concerns?  Nice to hear from you. Ana. 

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[Sirlene GÓES]

Hi Ana,

I'll look for Claudia on facebook. My wisdom teeth are internal (impacted?). My dentist said that it will only be necessary to remove them if they cause me pain, headache or any discomfort. That’s not my case.

My sister also had internal wisdom teeth. She had headaches daily, so our dentist decided to remove them with a minor surgery. The dentist moved the lower jaw and removed 2 teeth. Everything was ok about the surgery. She lost sensation in the lower lip for a year, but it returned slowly. The surgery was made in 2009. Since then she hasn’t had headaches often.

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Sirlene Góes

[Payne Aaron]

Hi Georgia,

Your story sounds very similar to my Dad's. He was born in 1941. It wasn't until 1981 that docs decided on SJS. 

Welcome to the list. Though I keep this up, there is an active SJS group on Facebook. Join us there too!

https://facebook.com/groups/113868815381831?ref=bookmark

thanks,

aaron

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[Ana Viveiros]

Thank you. :)

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[Georgia DeLong]

Hi, I live in Colorado, USA. I have had 3 surgeries since 2000. Each time I did not choose general anesthetic. I chose to have nerve blocks and IV sedatives because I am unable to open my mouth wide enough to insert a tube. I have osteoarthritis and osteoporosis, mostly because my age. I can walk without a cane or walker on a daily basis, but when I am traveling I will use a cane for better balance. I own and drive a car. When I travel to places like Walt Disney World in Florida, I usually rent a scooter to get around because my hips begin to hurt if I walk too far.

I have had my wisdom teeth removed in my twenties. Again, I had IV sedative and slept through it.

I have finally signed up on Facebook and have gone to Aaron's group page. Thanks Aaron!

[Aaron Payne]

Georgia,

Have you signed up for the group?

thanks,
aaron

[Ana Viveiros]

Welcome Georgia and Thank you.

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