Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 No, I haven't heard from . I know she was moving. I've e-mailed her but never heard from her. Never received any of my emails back. I would sure like to hear from her. Jo New MemberHello. I am new to this group. Thanks for the welcome. Justcurious if anyone has heard from Pritchard lately. My story is long. Had RP since 95. I am doing well right now. PTL! Janet FridDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Welcome Janet ! It's a great group. At 01:10 PM 9/29/2000 -0000, you wrote: >No, I haven't heard from . I know she was moving. I've e-mailed her but never heard from her. Never received any of my emails back. I would sure like to hear from her. >Jo > New Member > > > Hello. I am new to this group. Thanks for the welcome. Just > curious > if anyone has heard from Pritchard lately. My story is long. > Had RP since 95. I am doing well right now. PTL! Janet Frid > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > >Attachment Converted: " c:\eudora\attach\ReRpo506 " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2000 Report Share Posted November 19, 2000 Thanks, I wasn't sure if I could jump right in. I guess I'm lucky(?) my RP was diagnosed quickly. I got a truly horrible sunburn in San Diego, when I got home to Hoffman Estates, IL and most of the other symptons had healed, my ears were still making me crazy from the pain. PC tried Prednisone which worked so long as the dose was high, every time he tried to bring it down, the pain came back. Sent me to the Rheumatologist who sent be for a biopsy, I couldn't believe he was biopsying my ears! Came back as RP and I've been on methotrexate ever since. It wasn't doing anything until he increased the dosage, now my ears feel much better...which my nervous system did. Some of your messages mentiond Dr. Trentham, I have an appointment with him on 11/29. Not sure what I want to hear, that I'veeen misdiagnosed and I'll be just fine would be nice, but I'm not expecting it. How did you all handle this? Do you learn to live with the fear? or what? I could certainly use some encouragement, this is pretty frightening. I've been trying to pretend it's nothing and it will go away, so far that has not been very effective. I'd love to hear how you all deal with this. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 I have been told a muscle biopsy would not be conclusive as he would be called a "mild" case. He is also diagnosed with autism. Where do I start?? Thanks great screen-name by the way... Do you mind sharing a little more of your story? like who suggested mito and such? I personally haven't ever heard this theory discussed on this list...my son does have a rather progressive course but we didn't know that when he got his biopsy (bx). I think the thing we all say around here is...it depends on how important a definitive diagnosis is to you. For me it was very very important...I am a little controlling (altho mito has taught me a thing or two in that department) and couldn't deal with not knowing...that was torture for me. In our case, our son was a healthy normal five year old and then started losing skills...we found out mid december of 2001 that had a neuromuscular disease and I joined this list on jan 8th...thats when I learned about shoffner! If you are going to have a bx, they are probably suggesting frozen which are often inconclusive...have a fresh bx is the only way to be sure (altho they aren't always 100%) either but the chances are pretty high you can get a dx (diagnosis) that way! There are only two centers in the country that do fresh... Shoffner in Atlanta and Bruce Cohen in Cleaveland...we went to shoffner. We went at the end of march and got our dx at the end of june...even though the news was devestating it was nice to know who the enemy was! About the autism thing...there is a list serve specifically for kids with mito and autism b/c it is so common...I think the link is meta_mito_autism and you should be abel to get some different ideas there. We do have quite a few of those same moms on this list though and I am sure they will help as well. hang in there and ask as many questions as you want...welcome to our group! deb...sorry to flood everyone's mailbox today but I am trying to do a little catch up after having a stomach bug... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 I have been told a muscle biopsy would not be conclusive as he would be called a "mild" case. He is also diagnosed with autism. Where do I start?? Thanks great screen-name by the way... Do you mind sharing a little more of your story? like who suggested mito and such? I personally haven't ever heard this theory discussed on this list...my son does have a rather progressive course but we didn't know that when he got his biopsy (bx). I think the thing we all say around here is...it depends on how important a definitive diagnosis is to you. For me it was very very important...I am a little controlling (altho mito has taught me a thing or two in that department) and couldn't deal with not knowing...that was torture for me. In our case, our son was a healthy normal five year old and then started losing skills...we found out mid december of 2001 that had a neuromuscular disease and I joined this list on jan 8th...thats when I learned about shoffner! If you are going to have a bx, they are probably suggesting frozen which are often inconclusive...have a fresh bx is the only way to be sure (altho they aren't always 100%) either but the chances are pretty high you can get a dx (diagnosis) that way! There are only two centers in the country that do fresh... Shoffner in Atlanta and Bruce Cohen in Cleaveland...we went to shoffner. We went at the end of march and got our dx at the end of june...even though the news was devestating it was nice to know who the enemy was! About the autism thing...there is a list serve specifically for kids with mito and autism b/c it is so common...I think the link is meta_mito_autism and you should be abel to get some different ideas there. We do have quite a few of those same moms on this list though and I am sure they will help as well. hang in there and ask as many questions as you want...welcome to our group! deb...sorry to flood everyone's mailbox today but I am trying to do a little catch up after having a stomach bug... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 I have been told a muscle biopsy would not be conclusive as he would be called a "mild" case. He is also diagnosed with autism. Where do I start?? Thanks great screen-name by the way... Do you mind sharing a little more of your story? like who suggested mito and such? I personally haven't ever heard this theory discussed on this list...my son does have a rather progressive course but we didn't know that when he got his biopsy (bx). I think the thing we all say around here is...it depends on how important a definitive diagnosis is to you. For me it was very very important...I am a little controlling (altho mito has taught me a thing or two in that department) and couldn't deal with not knowing...that was torture for me. In our case, our son was a healthy normal five year old and then started losing skills...we found out mid december of 2001 that had a neuromuscular disease and I joined this list on jan 8th...thats when I learned about shoffner! If you are going to have a bx, they are probably suggesting frozen which are often inconclusive...have a fresh bx is the only way to be sure (altho they aren't always 100%) either but the chances are pretty high you can get a dx (diagnosis) that way! There are only two centers in the country that do fresh... Shoffner in Atlanta and Bruce Cohen in Cleaveland...we went to shoffner. We went at the end of march and got our dx at the end of june...even though the news was devestating it was nice to know who the enemy was! About the autism thing...there is a list serve specifically for kids with mito and autism b/c it is so common...I think the link is meta_mito_autism and you should be abel to get some different ideas there. We do have quite a few of those same moms on this list though and I am sure they will help as well. hang in there and ask as many questions as you want...welcome to our group! deb...sorry to flood everyone's mailbox today but I am trying to do a little catch up after having a stomach bug... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Hi my name is Patty, our 6 year old son was recently diagnosed with Mitochondrial Myopathy last year, it took 3 year's and lot's of test to get to this point, we finally had a muscle biopsy done last May and it wasn't until that was done that we started getting some answers. He too like your child has autisum and as you know this is associated with Mito. After 3 long grueling years of test I finally pushed for a muscle biopsy, but make sure who does it uses fresh muscle and not frozen muscle it can alter the test results. Also my son like yours is given a mild case but he's on a cocktail of med's and gets OT and PT and SL therapy. Don't give up it's a very long process and even now we still dont have a spacific Mito. Patty Kraynik Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 , > Actually, the bad breath is called Ketosis. It is > when your body is burning excessive amounts of fat, Actually I believe it is a result of matabolizing protein. It is normally only present in rapid weightloss programs. Hope this helps. Ed Kemper & Delores edkemper@... Quote Link to comment Share on other sites More sharing options...
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