walking

jillio said:
That is about my story, too. I was diagnosed about 10 years ago with Fibromyalgia. A year ago, the doc I have now began to question that, so he sent me for an MRI that confirmed that it is not Fibromyalgia, but MS instead.
It is a relief to know finally what is wrong and what to expect. The good news is that I have the kind that will go into remission, so sometimes I don't have symptoms, and sometimes I do. You just learn to deal with the little things like balance being off and vision changes. It sure could be something worse!
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Sounds a bit like my story - Although I am currently diagnosed as not having MS (because my MRI doesn't show lesions...yet). I've been diagnosed with FM after years of testing - but have many MS-like symptoms as well. The current plan of action is treating me as if I have Fibro and repeating MRIs every few years (or if there's a big change). Although I'm relieved to finally have a DX that makes sense (fibromyalgia + Chronic Myofascial Pain + plus slight muscle atrophy due to an accident etc) my doctors and I still know that there may be something "lurking" around the corner as well.


I'm glad you finally got a Dx that makes sense and medications that will help you :)
 
Anij said:
Sounds a bit like my story - Although I am currently diagnosed as not having MS (because my MRI doesn't show lesions...yet). I've been diagnosed with FM after years of testing - but have many MS-like symptoms as well. The current plan of action is treating me as if I have Fibro and repeating MRIs every few years (or if there's a big change). Although I'm relieved to finally have a DX that makes sense (fibromyalgia + Chronic Myofascial Pain + plus slight muscle atrophy due to an accident etc) my doctors and I still know that there may be something "lurking" around the corner as well.


I'm glad you finally got a Dx that makes sense and medications that will help you :)
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Thank you. And that is the course that I went: treating as if FM until the lesions showed on MRI. The treatments really don't differ much. It is all a matter of treating sx.
 
rosebee said:
Here (Pendred Syndrome [NIDCD]) is the National Institutes of Health page on Pendred Syndrome.

It says that up to 40% of individuals with this syndrome will have "some vestibular weakness when their balance system is tested. ... Some babies with Pendred syndrome may start walking later than other babies."

I wouldn't worry at all. To me, it sounds like the same Syndrome that caused your son's hearing loss is also affecting his balance.
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he only has one copy of the gene that causes pendred though so i'm not sure if that affects anything or not, the surgeon didn't really have time to explain anything to me

he said that having one copy of this gene shouldn't even cause profound hearing loss so my son needs more testing

this is all very confusing
 
taylorjade. said:
he only has one copy of the gene that causes pendred though so i'm not sure if that affects anything or not, the surgeon didn't really have time to explain anything to me

he said that having one copy of this gene shouldn't even cause profound hearing loss so my son needs more testing

this is all very confusing
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Only one copy of the gene means that if he shows any symtpoms of Pendred at all, they will be very mild.

You may never know exactly what caused your son's hearing loss. Most people don't. But that is perfectly all right. When it comes to deafness, you don't really need to know why. It doesn't change anything about what is.
 
I didn't start walking until I was 18 months old. My balance was off. I still have balance problems.

I agree with the posters that you should get a second opinion, taylorjade..
(Sometimes a third opinion. Good luck!)
 
jillio said:
Only one copy of the gene means that if he shows any symtpoms of Pendred at all, they will be very mild.

You may never know exactly what caused your son's hearing loss. Most people don't. But that is perfectly all right. When it comes to deafness, you don't really need to know why. It doesn't change anything about what is.
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i know it won't change anything, but if there is a possibility that he could have symptoms of other things in the future it would be nice to know and to be prepared, but i know thats not always possible. also if i ever have other children it would be good to know their chances of having whatever my son has if he has anything, because maybe i could have done things better/differently had i known earlier on
 
taylorjade. said:
i know it won't change anything, but if there is a possibility that he could have symptoms of other things in the future it would be nice to know and to be prepared, but i know thats not always possible. also if i ever have other children it would be good to know their chances of having whatever my son has if he has anything, because maybe i could have done things better/differently had i known earlier on
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Have you checked into genetic counseling? They can determine what the risks are for any other children you may have.
 
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