Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Hi, Welcome and sorry you have to be here. I hope we can help you. We have a great group here with lots of info. You sound a lot like me. I'm 35 and have confirmed Mito. I have most of the symptoms you have mentionned and lots more but my eyes are the most obviously affected. I'm interested in the term "internuclear ophthalmoplegia". I've never heard of that phrase. I have Chronic Progressive External Opthamalplegia (CPEO) with severe ptosis of the lids and eyeballs, ocular migraines, double vision, etc etc etc. I wonder if that is what you have?? Have you seen a neuro opthamalagist? That has been the difference for me. My neuro op has been able to make prisms for me that really help with the double vision. Its far from perfect but has really improved my quality of life. I am planning on having the frontalis sling in my right eye this summer to help improve the droopiness. CPEO can be a mito diagnosis on its own or also goes hand and hand with other forms like Kearns Sayre. You really need to be evaluated by a specialist. Where do you live? My first suggestion would be to register with the Muscular Dystrophy Association. They have MDA clinics that can sometimes be of great benefit. Some are much better than others. I go to the clinic at Columbia Presbyterian in NYC and see Dr. Hirano who is a mito specialist. What is great is that whatever isn't covered by health insurance is picked up by MDA. Even my biopsy was covered. There are several other mito centers around the country. The mito list that you have signed up with is for mito and has adult mito patients on it but mostly covers parents of affected kids. Sign yourself up with Mitoldies on yahoo groups. That is a list for adults with mito. There is also an Adultmito list but I think you need an invitation for it. I could get you one if interested. I belong to all three but that means lots of mail. Mitoldies will give you the most info as an adult. I have lots more info but this is getting long. Please feel free to ask anything. You can email me privately if you would like. Hope this helped. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi, I'd go to www.umdf.org and get a list of the mito labs and ask you PCP to draw them. We were recently told by one of the top mito guys that if you have mito by adolescence you carnatine and CoQ10 would be low and you'd have little muscle mass. There is also an adult mito list. Have you joined that list? The MDAs in our state have basically NO experience with mito. I think that MDA is a hit and miss proposition and I wouldn't go there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 That must be for folks with total defects? We have partial complex 1, and myself & the kids have plenty of muscle mass. And 2 out of the 4 boys have carnitine deficiency, not all. Cindy-GA Re: Adult Mito?. We were recently told by one of the top mito guys that if you have mito by adolescence you carnatine and CoQ10 would be low and you'd have little muscle mass. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 > That must be for folks with total defects? We have partial complex 1, and myself & the kids have plenty of muscle mass. > And 2 out of the 4 boys have carnitine deficiency, not all. > Cindy-GA > We were recently told by one of the top mito guys that if you have mito by > adolescence you carnatine and CoQ10 would be low and you'd have little muscle > mass. No, we were told that if there was mito at all involved that by adolescence there would be little muscle mass, and carnitine and CoQ10 deficiency. One of the big three said that to us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Well, he has not seen my kids- My 6 yr. old won the Marine Corps Ironman Challenge last Sat- 3 styles of wrestling. And, I know there is a mom on here that has an all-star soccer playing daughter. Fatigue is a big issue here- not muscle mass- and they do have hypermobile joints. Feel free to send him my email address- I 'll answer anything he likes. Boles helped Dx us- as well as Megson, Yale and NIH. Cindy-GA Re: Adult Mito? > That must be for folks with total defects? We have partial complex 1, and myself & the kids have plenty of muscle mass.> And 2 out of the 4 boys have carnitine deficiency, not all.> Cindy-GA> We were recently told by one of the top mito guys that if you have mito by > adolescence you carnatine and CoQ10 would be low and you'd have little muscle > mass.No, we were told that if there was mito at all involved that by adolescence there would be little muscle mass, and carnitine and CoQ10 deficiency. One of the big three said that to us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 > Well, he has not seen my kids- My 6 yr. old won the Marine Corps Ironman Challenge last Sat- 3 styles of wrestling. And, I know there is a mom on here that has an all-star soccer playing daughter. Fatigue is a big issue here- not muscle mass- and they do have hypermobile joints. Feel free to send him my email address- I 'll answer anything he likes. Boles helped Dx us- as well as Megson, Yale and NIH. My daughter has hypermobile joints from waist up but is a bit spastic from waist down. All her probs have been blamed on prematurity by docs. Fatigue for both children is disabling. DD uses w/c for distance and DS spends days and days in bed and at 16, is unable to attend school. But, we saw one of the three main guys. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 I hope that one of the "big three" doesn't actually TREAT mito! obviously it is one of those comments that makes a person look pretty dumb. we have had some of those ourselves...such as one of the "big 3" saying to us "if your muscle biopsy comes back normal u do not and I repeat do not have mito at all. period." those are pretty near verbatim....so as u can see it was not right....we all know differently and not any doctor can say something so definitively. Donna mito mom to 5 mito kids Re: Adult Mito? > That must be for folks with total defects? We have partial complex 1, and myself & the kids have plenty of muscle mass.> And 2 out of the 4 boys have carnitine deficiency, not all.> Cindy-GA> We were recently told by one of the top mito guys that if you have mito by > adolescence you carnatine and CoQ10 would be low and you'd have little muscle > mass.No, we were told that if there was mito at all involved that by adolescence there would be little muscle mass, and carnitine and CoQ10 deficiency. One of the big three said that to us.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 > I hope that one of the " big three " doesn't actually TREAT mito! obviously it is one of those comments that makes a person look pretty dumb. Yes, he treats mito and is one of the most liberal diagnoser of mito. And it doesn't make him look dumb. It just leaves us with no place to go. We can't even get a biopsy. Quote Link to comment Share on other sites More sharing options...
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