Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Hi everyone every conversation has been so helpful but also very scary for us.Our Daughter Mia still does not have the mito dx but they think she could.She gets the muscle biopsy next wednedsay anything i should be aware of would be good or any advice?I'm not that knowledgable about mito.Any advice would be good. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Welcome to the group. When you feel up to it, please tell us a little bit about Mia. Where will she be having her biopsy done? If you are looking for information about mitochondrial disorders, the UMDF website is a very good source of information. (www.umdf.org) It can be a bit overwhelming at first but, I have found it to be a great resource. I understand your fear as we were all there at one point. You have found a great bunch of women (and men) in this group. We will be here to listen, answer questions and support you when needed. Kim - Mom to and Lindsey - (soon to be 3!) Partial Complex I, Mason (5) Delaney (7) both healthy > Hi everyone every conversation has been so helpful but also very > scary for us.Our Daughter Mia still does not have the mito dx but > they think she could.She gets the muscle biopsy next wednedsay > anything i should be aware of would be good or any advice?I'm not > that knowledgable about mito.Any advice would be good. > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 My granddaughter (age 10) had a muscle biopsy August 10th at Boston Children's Hospital. They had her come the day before for pre-surgery testing. The day of the biopsy, they got her sleepy with a gas before doing the I.V., which was helpful. They let her father (gowned up in clean-room garb) sit with her until she fell asleep. After the procedure, she was quite sleepy and since it was late (the whole day ran late) they admitted her. Next morning after a little breakfast she was discharged -- no problems. That first day, she didn't want to walk by herself. I sat with her for the day and she came around gingerly later on. She has about a 1-1/2" scar on her leg; it was sore for a few days and she was careful. Stitches were done with the disolving stitches under the skin, so nothing to remove. About a week after the biopsy, she went to her own GP here in Vermont and the doctor said everything looked really good. That's about it, I hope it helps! Now we sit and wait for 1-3 months for the precise diagnosis. Mimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2007 Report Share Posted December 8, 2007 Hi Ken & , The way that I found out I had sarc was through a needle biopsy and then a biopsy of a lump itself . I had a subcutaneous lump on my arm that was 3cm x 10 cm long. It was red, painful and burning. I was very nervous until I found out what it was . Of course, I was sent from dr. to specialist to specialist before they found out. So it took awhile. They also diagnosed me with fibromyalgia and sent me to a psychologist as well. I am sorry Ken that you are going through so much. I hope you get some help soon. Debbie T. Co-Moderator Re: Muscle biopsy Hi mary, its been almost 4 years being sick and ofcourse no one knew what was wrong with me except psycho. A friend MD sent me to one of his friends a neurologist, he did a emg with a needle, not shock or on the skin, there is a difference, you need the needle emg that goes right into the muscle, that way the md can move it to each specific muscle to see which one is the diseased muscle. if abnormal on the emg, then the next step through sarcoid history is muscle biopsy of that muscle to determine the actual pathology (name of the disease) some do it as surgery under general anesthesia(best) and some locals. they can't just biopsy any muscle where they THINK the disease is, thats a waste and uncomfortable for you. Don't let them tell you, "they think its", thats no good, try to find a neurologist with movement disorder experience that will take you in and work on you real good and ask for a needle emg, and if positive, then a muscle biopsy if necessary ask for general anesthesia, its better for you if your body can handle it. hope all goes well, let me know how you make out, wish you the best. keep going and don't stop!!! ken Solberg wrote: Ken, Did you have a meeting with the doc and he agreed to have you get a biopsy and then you went to a surgeon? They think I have fibromyalgia and arthritis but I wonder if the pains aren't sarc and thus be treated differently. I have sarc everywhere so why wouldn't it be in my muscles. My left upper arm has very large bumps inside the muscle and is sometimes very painful Will your treatment be any different? .S.ken stetson <ostrichlegs_ 2000 (AT) yahoo (DOT) com> wrote: i finally had my muscle and nerve biopsy astusc two weeks ago monday and got results from pathaology, all were abnormal with moderate disease, it can't state what the actual disease is yet as my neurologist needs to correlate all the info, i had two muslces on my left thigh (my good leg) and the sural nerve on my left ankle. they put me under general anethesia due to the invasiveness of the procedure. so we will see soon what the actual diagnosis is soon. I also have learned that sarcoidosis systemic effects not need to be found in the actual granuloma itself, but as being systemic, the muscle involved will show throughout that that particular muscle is diseased. hope all are fine, and keep the faith, keep going kentiodaat (AT) aol (DOT) com wrote: Bonnie, The problem with muscle biopsies is that they will hopefully get a spot that has sarcoidosis. I suspect that they try to find the knot or hard spot (like a trigger point with fibromylagia) that he will take the biospy from. Muscles are the second most likely place to find sarc-- the lungs being the first. Do you have pulm sarc? Take care, Tracie NS Co-owner/moderator Check out AOL Money Finance's list of the hottest products and top money wasters of 2007. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2007 Report Share Posted December 8, 2007 Hi Ken & , The way that I found out I had sarc was through a needle biopsy and then a biopsy of a lump itself . I had a subcutaneous lump on my arm that was 3cm x 10 cm long. It was red, painful and burning. I was very nervous until I found out what it was . Of course, I was sent from dr. to specialist to specialist before they found out. So it took awhile. They also diagnosed me with fibromyalgia and sent me to a psychologist as well. I am sorry Ken that you are going through so much. I hope you get some help soon. Debbie T. Co-Moderator Re: Muscle biopsy Hi mary, its been almost 4 years being sick and ofcourse no one knew what was wrong with me except psycho. A friend MD sent me to one of his friends a neurologist, he did a emg with a needle, not shock or on the skin, there is a difference, you need the needle emg that goes right into the muscle, that way the md can move it to each specific muscle to see which one is the diseased muscle. if abnormal on the emg, then the next step through sarcoid history is muscle biopsy of that muscle to determine the actual pathology (name of the disease) some do it as surgery under general anesthesia(best) and some locals. they can't just biopsy any muscle where they THINK the disease is, thats a waste and uncomfortable for you. Don't let them tell you, "they think its", thats no good, try to find a neurologist with movement disorder experience that will take you in and work on you real good and ask for a needle emg, and if positive, then a muscle biopsy if necessary ask for general anesthesia, its better for you if your body can handle it. hope all goes well, let me know how you make out, wish you the best. keep going and don't stop!!! ken Solberg wrote: Ken, Did you have a meeting with the doc and he agreed to have you get a biopsy and then you went to a surgeon? They think I have fibromyalgia and arthritis but I wonder if the pains aren't sarc and thus be treated differently. I have sarc everywhere so why wouldn't it be in my muscles. My left upper arm has very large bumps inside the muscle and is sometimes very painful Will your treatment be any different? .S.ken stetson <ostrichlegs_ 2000 (AT) yahoo (DOT) com> wrote: i finally had my muscle and nerve biopsy astusc two weeks ago monday and got results from pathaology, all were abnormal with moderate disease, it can't state what the actual disease is yet as my neurologist needs to correlate all the info, i had two muslces on my left thigh (my good leg) and the sural nerve on my left ankle. they put me under general anethesia due to the invasiveness of the procedure. so we will see soon what the actual diagnosis is soon. I also have learned that sarcoidosis systemic effects not need to be found in the actual granuloma itself, but as being systemic, the muscle involved will show throughout that that particular muscle is diseased. hope all are fine, and keep the faith, keep going kentiodaat (AT) aol (DOT) com wrote: Bonnie, The problem with muscle biopsies is that they will hopefully get a spot that has sarcoidosis. I suspect that they try to find the knot or hard spot (like a trigger point with fibromylagia) that he will take the biospy from. Muscles are the second most likely place to find sarc-- the lungs being the first. Do you have pulm sarc? Take care, Tracie NS Co-owner/moderator Check out AOL Money Finance's list of the hottest products and top money wasters of 2007. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
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