Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Hello I am back and wanted to update you, I am possible mito, I read other post and learn a lot through doing that. I have a question though. I just got back from the surgeon who did my muscle biopsy, he told me some of the results were in and to make a follow up with my neurologist. Well I called and they said they have some back and they are waiting for other test of the muscle to come back. So I couldn't talk to the doctor because he was out of the office until monday afternoon, I am a little anxious about the results, I am actually hoping to come to a conclusion to my problem. So anyway I know that might sound terrible but its been 1 1/2 years. I need to get on with my life and deal with whatever this thing is. The technician/nurse told me the report just stated Mild Non specific changes on it, she didn't tell me more but said the doctor would call me. Does anyone know what this means, My friend who is a transcriptionist at a hospital says that basically means that they found something but dont know what is causing it. Also I dont know if I mentioned this before but I was wondering if anyone has trouble sitting in a chair with there legs down, it makes mine ache terribly and I always have to have them raised. Also my toes turn purple also, they thought it was raynauds but its the middle of summer so I doubt its that. I am still on oxygen, my lung function test that I had showed low lung volumes and also decreased lung size. Sorry this is so long, Hope everyone is hanging in there, the summer tends to make me more tired. Have a wonderful day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 , I hope you get some answers from the biopsy. As far as the purple legs go (I have it too)it is probably venous pooling. It is when the blood doesn't circulate well and pools in the legs causing the purple and aching. It can also cause low bp when standing d/t blood in legs not elsewhere.The only thing to do is elevate when you can. It can be part of the autonomic dysfunction caused by mito! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Your friend is right. I had this result on my first several biopsies. That is why I ended up getting a fresh biopsy. It is certainly a step in the right direction and the results that aren't yet back may be the clincher. My legs get sore from being down any length of time, but I also get stiff so I try to move around or stand up from by wheelchair every so often. Hang in there, laurie > > Reply-To: > Date: Thu, 26 Aug 2004 20:32:13 -0000 > To: > Subject: Muscle biopsy results > > Hello I am back and wanted to update you, I am possible mito, I read > other post and learn a lot through doing that. I have a question > though. I just got back from the surgeon who did my muscle biopsy, he > told me some of the results were in and to make a follow up with my > neurologist. Well I called and they said they have some back and > they are waiting for other test of the muscle to come back. So I > couldn't talk to the doctor because he was out of the office until > monday afternoon, I am a little anxious about the results, I am > actually hoping to come to a conclusion to my problem. So anyway I > know that might sound terrible but its been 1 1/2 years. I need to > get on with my life and deal with whatever this thing is. The > technician/nurse told me the report just stated Mild Non specific > changes on it, she didn't tell me more but said the doctor would call > me. Does anyone know what this means, My friend who is a > transcriptionist at a hospital says that basically means that they > found something but dont know what is causing it. > > Also I dont know if I mentioned this before but I was wondering if > anyone has trouble sitting in a chair with there legs down, it makes > mine ache terribly and I always have to have them raised. Also my > toes turn purple also, they thought it was raynauds but its the > middle of summer so I doubt its that. > > I am still on oxygen, my lung function test that I had showed low > lung volumes and also decreased lung size. Sorry this is so long, > Hope everyone is hanging in there, the summer tends to make me more > tired. > > Have a wonderful day > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Oh wow, thanks, I hope I get some answers to, the purple toes have been confusing the heck out of these doctors, I will mention that to them - In , " thefourofus03 " wrote: > , > > I hope you get some answers from the biopsy. As far as the purple > legs go (I have it too)it is probably venous pooling. It is when the > blood doesn't circulate well and pools in the legs causing the > purple and aching. It can also cause low bp when standing d/t blood > in legs not elsewhere.The only thing to do is elevate when you can. > It can be part of the autonomic dysfunction caused by mito! > > > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Thanks Laurie, I am glad I found this group, I am finding out more information from this group then i do the doctors. I will keep you informed. > > > Your friend is right. I had this result on my first several biopsies. That > is why I ended up getting a fresh biopsy. It is certainly a step in the > right direction and the results that aren't yet back may be the clincher. > > My legs get sore from being down any length of time, but I also get stiff so > I try to move around or stand up from by wheelchair every so often. > > Hang in there, > laurie > > > From: " " > > Reply-To: > > Date: Thu, 26 Aug 2004 20:32:13 -0000 > > To: > > Subject: Muscle biopsy results > > > > Hello I am back and wanted to update you, I am possible mito, I read > > other post and learn a lot through doing that. I have a question > > though. I just got back from the surgeon who did my muscle biopsy, he > > told me some of the results were in and to make a follow up with my > > neurologist. Well I called and they said they have some back and > > they are waiting for other test of the muscle to come back. So I > > couldn't talk to the doctor because he was out of the office until > > monday afternoon, I am a little anxious about the results, I am > > actually hoping to come to a conclusion to my problem. So anyway I > > know that might sound terrible but its been 1 1/2 years. I need to > > get on with my life and deal with whatever this thing is. The > > technician/nurse told me the report just stated Mild Non specific > > changes on it, she didn't tell me more but said the doctor would call > > me. Does anyone know what this means, My friend who is a > > transcriptionist at a hospital says that basically means that they > > found something but dont know what is causing it. > > > > Also I dont know if I mentioned this before but I was wondering if > > anyone has trouble sitting in a chair with there legs down, it makes > > mine ache terribly and I always have to have them raised. Also my > > toes turn purple also, they thought it was raynauds but its the > > middle of summer so I doubt its that. > > > > I am still on oxygen, my lung function test that I had showed low > > lung volumes and also decreased lung size. Sorry this is so long, > > Hope everyone is hanging in there, the summer tends to make me more > > tired. > > > > Have a wonderful day > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Hi , I hope you get to talk to your neurologist soon. I'm also waiting for my biopsy results and understand exactly how you feel. They have only half of my results (results from the fresh muscle) but I won't be able to get a report or results for at least another month. I just try to put it out of my mind and stay busy (when that starts working... I'll let you know ) It must be particularly frustrating to know just a little information and not have your questions answered. Maggie > Hello I am back and wanted to update you, I am possible mito, I read > other post and learn a lot through doing that. I have a question > though. I just got back from the surgeon who did my muscle biopsy, he > told me some of the results were in and to make a follow up with my > neurologist. Well I called and they said they have some back and > they are waiting for other test of the muscle to come back. So I > couldn't talk to the doctor because he was out of the office until > monday afternoon, I am a little anxious about the results, I am > actually hoping to come to a conclusion to my problem. So anyway I > know that might sound terrible but its been 1 1/2 years. I need to > get on with my life and deal with whatever this thing is. The > technician/nurse told me the report just stated Mild Non specific > changes on it, she didn't tell me more but said the doctor would call > me. Does anyone know what this means, My friend who is a > transcriptionist at a hospital says that basically means that they > found something but dont know what is causing it. > > Also I dont know if I mentioned this before but I was wondering if > anyone has trouble sitting in a chair with there legs down, it makes > mine ache terribly and I always have to have them raised. Also my > toes turn purple also, they thought it was raynauds but its the > middle of summer so I doubt its that. > > I am still on oxygen, my lung function test that I had showed low > lung volumes and also decreased lung size. Sorry this is so long, > Hope everyone is hanging in there, the summer tends to make me more > tired. > > Have a wonderful day > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 -Dear , I had that result on one of my 3 biopsies (one- more signifigant changes, the other normal) Some of my docs look at that result and say- nothing there, but the mito doctor I saw did rspect it (think heavens) My legs often get very achy when I sit with my legs down too much. however, they often get crampy if I sitwith them up all the time. A constant balancing act!! Hope you get a defined answer when the rest of the results come in, Celia- - In , Laureta Fitzgerald wrote: > > > Your friend is right. I had this result on my first several biopsies. That > is why I ended up getting a fresh biopsy. It is certainly a step in the > right direction and the results that aren't yet back may be the clincher. > > My legs get sore from being down any length of time, but I also get stiff so > I try to move around or stand up from by wheelchair every so often. > > Hang in there, > laurie > > > From: " " > > Reply-To: > > Date: Thu, 26 Aug 2004 20:32:13 -0000 > > To: > > Subject: Muscle biopsy results > > > > Hello I am back and wanted to update you, I am possible mito, I read > > other post and learn a lot through doing that. I have a question > > though. I just got back from the surgeon who did my muscle biopsy, he > > told me some of the results were in and to make a follow up with my > > neurologist. Well I called and they said they have some back and > > they are waiting for other test of the muscle to come back. So I > > couldn't talk to the doctor because he was out of the office until > > monday afternoon, I am a little anxious about the results, I am > > actually hoping to come to a conclusion to my problem. So anyway I > > know that might sound terrible but its been 1 1/2 years. I need to > > get on with my life and deal with whatever this thing is. The > > technician/nurse told me the report just stated Mild Non specific > > changes on it, she didn't tell me more but said the doctor would call > > me. Does anyone know what this means, My friend who is a > > transcriptionist at a hospital says that basically means that they > > found something but dont know what is causing it. > > > > Also I dont know if I mentioned this before but I was wondering if > > anyone has trouble sitting in a chair with there legs down, it makes > > mine ache terribly and I always have to have them raised. Also my > > toes turn purple also, they thought it was raynauds but its the > > middle of summer so I doubt its that. > > > > I am still on oxygen, my lung function test that I had showed low > > lung volumes and also decreased lung size. Sorry this is so long, > > Hope everyone is hanging in there, the summer tends to make me more > > tired. > > > > Have a wonderful day > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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