Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Hang in there Vivian, When I talked to my neurologist about having a muscle biopsy, she told me that neither a positive nor negative biopsy would change the diagnosis. Obviously you have something going on, just just don't have the right words from the doctor to describe it. I went 15 years that way and yes it was torture because I was lead to believe that it was all in my head, because the doctors could identify it. Yet my faithful family doctor treated me symptomatically throughout the duration. Now I have a name for what is wrong, and a sense of "belonging" with others that experience the same, but it didn't make the physical problems better or worse. I didn't know about before I was diagnosed, but if I had they would have welcome me in the fold without diagnosis, giving me the support I needed to deal with an unknown chronic medical condition that seemed to be robbing me of my health, and independence. There are several on this board in exactly that same situation...medical problems with unknown diagnosis. Let us provide that support to you too and hopefully sometime you will have a "word" that specifically describes what is wrong and ties everything that is wrong together. Hang in there gal, Ruth Re: Making an appt.> > > > ,> > I'm glad you are seeking an appointment. I know> you> and your family have been down a long road without> answers and hopefully, this will be the beginning> of a> new road. It's always harder when you don't have> any> idea why and the doctor's don't seem to be able to> help. I'm hoping you get that appointment> relatively> quickly. Please let us know when you do.> > I'm glad you are enjoying the group. They are> wonderful. This list has been around for quite> some> time and has always been a great source of> support.> It's unfortunate that we need a list of this type,> but> I have to tell you that I have met many wonderful> friends here. You will too.> > Have a wonderful day.> > Alice> > > > > > 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.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Dear Ruth and Alice, Thank you for your kind words and hope and encouragement. I can’t stop crying. I went to get my haircut…(the appointment was already scheduled), but had them cut most of my hair off…I really needed a change, (in anything) does that sound crazy. I need to stop crying because I have to go to my son’s baseball game, and he has a buddy over right now. I am so glad the computer is not in that room. Cleveland called this morning, before I heard about my biopsy. I asked her if Dr. Cohen was offering a biopsy for Jack just because I have been persistent. She assured me that was not the case. She said that many people come to CCF asking for a biopsy and if he feels it is not warranted he tells them so and will not schedule it. She said that if Dr. Cohen has given us the option to have Jack go through the muscle biopsy that there is evidence to warrant it. She also said that people who have clear mito can have a negative biopsy and some with mild symptoms can have a positive one. Anyway, I had been so hopeful, I prayed so hard to have an answer…I know that I just need to keep going. I also know that I just need to stop crying at the moment. I love you guys, Vivian Re: Making an appt. > > > > , > > I'm glad you are seeking an appointment. I know > you > and your family have been down a long road without > answers and hopefully, this will be the beginning > of a > new road. It's always harder when you don't have > any > idea why and the doctor's don't seem to be able to > help. I'm hoping you get that appointment > relatively > quickly. Please let us know when you do. > > I'm glad you are enjoying the group. They are > wonderful. This list has been around for quite > some > time and has always been a great source of > support. > It's unfortunate that we need a list of this type, > but > I have to tell you that I have met many wonderful > friends here. You will too. > > Have a wonderful day. > > Alice > > > > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Hi Vivian, You have had a lot of pressure building up hoping for a resolution to some serious difficulties. Be kind to yourself...and let it all out. Nothing is wrong with crying. Chronic disorders, especially with multiply symptoms, are very difficult. Here's a big hug, Ruth Re: Making an appt.> > > > ,> > I'm glad you are seeking an appointment. I know> you> and your family have been down a long road without> answers and hopefully, this will be the beginning> of a> new road. It's always harder when you don't have> any> idea why and the doctor's don't seem to be able to> help. I'm hoping you get that appointment> relatively> quickly. Please let us know when you do.> > I'm glad you are enjoying the group. They are> wonderful. This list has been around for quite> some> time and has always been a great source of> support.> It's unfortunate that we need a list of this type,> but> I have to tell you that I have met many wonderful> friends here. You will too.> > Have a wonderful day.> > Alice> > > > > > 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.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Thanks Ruth, Your words are a comfort, Vivian Re: Making an appt. > > > > , > > I'm glad you are seeking an appointment. I know > you > and your family have been down a long road without > answers and hopefully, this will be the beginning > of a > new road. It's always harder when you don't have > any > idea why and the doctor's don't seem to be able to > help. I'm hoping you get that appointment > relatively > quickly. Please let us know when you do. > > I'm glad you are enjoying the group. They are > wonderful. This list has been around for quite > some > time and has always been a great source of > support. > It's unfortunate that we need a list of this type, > but > I have to tell you that I have met many wonderful > friends here. You will too. > > Have a wonderful day. > > Alice > > > > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Vivian, I know the road to diagnosis is a rough road to ride, but dont give up. We are all here with you and please dont leave us just because you had a negative result. we all have. I am traveling a rough road to diagnosis myself and cant imagine doing it without all my friends here. if you think it is hard with us it will be harder without. Please stay we all enjoy you and understand your feelings Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Dear Vivian: Boy, can I relate.... I'll probably be crying throughout writing this email. My biopsy results from Atlanta came in last week. Like you, I have numerous and prominent symptoms that could be nothing but mito. Shoffner says I don't have mito......He saw "this and that" (paraphrasing here) but doesn't think it could be mito. I have been devastated......why? I don't know...I guess part of me is scared that those who love me and the medical professionals who are treating me are going to think I'm crazy! I'm also going to put out there an observation I had about Shoffner. He was very negative about a positive diagnosis during my exam/conference with him prior to the biopsy. He was especially very skeptical about my sons having mito because they were diagnosed by Dr. Kelley. I just wonder if there is some professional sniping going on there. In any event, I am sending his complete report to Kelley and asking him to comment on it. I am praying that my local mito doctor still believes that I have mito. Go ahead and cry Vivian. I have done my share of crying since I got my results. Isn't it possible that all of the people who have mito syptoms, but are considered negative on biopsy could be another variant? Perhaps another medical professional should go through that pile of patients and see if there is a common denominator. I feel like someone hit me in the solar plexus. I was wondering how I was going to tell my mito family about this. I imagined that I would be bumped from my mito family....probably more than anything, this worry is the most upsetting for me. I don't know what I would do without you guys!!!! Carol Re: Making an appt.> > > > ,> > I'm glad you are seeking an appointment. I know> you> and your family have been down a long road without> answers and hopefully, this will be the beginning> of a> new road. It's always harder when you don't have> any> idea why and the doctor's don't seem to be able to> help. I'm hoping you get that appointment> relatively> quickly. Please let us know when you do.> > I'm glad you are enjoying the group. They are> wonderful. This list has been around for quite> some> time and has always been a great source of> support.> It's unfortunate that we need a list of this type,> but> I have to tell you that I have met many wonderful> friends here. You will too.> > Have a wonderful day.> > Alice> > > > > > 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.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Vivian Just because they saw a normal biopsy, doesn't been you don't have mito. I had 4 normal ones, because they didn't do the right testing. Please keep your appointment on Friday. Hugs, laurie > > Reply-To: > Date: Tue, 27 May 2003 14:24:40 -0500 > To: < > > Subject: biopsy results > > Well they called today and told me that my muscle biopsy was perfectly > normal. I had a small moment of relief and then a flood of overwhelming > despair. I feel like my heart is broken, I know it is all about keeping > walking but I really don't know if I can. > > I just don't understand how I can have an abnormal MRI, heart exam and > tests, VEP's and no diagnosis. I just don't understand this any more. > I am seeing the doctor in Milwaukee on Friday.I wonder if she would even > want to see me given this. > > Going for a long cry now, will talk later. > > Vivian > > Re: Making an appt. >> >> >> >> , >> >> I'm glad you are seeking an appointment. I know >> you >> and your family have been down a long road without >> answers and hopefully, this will be the beginning >> of a >> new road. It's always harder when you don't have >> any >> idea why and the doctor's don't seem to be able to >> help. I'm hoping you get that appointment >> relatively >> quickly. Please let us know when you do. >> >> I'm glad you are enjoying the group. They are >> wonderful. This list has been around for quite >> some >> time and has always been a great source of >> support. >> It's unfortunate that we need a list of this type, >> but >> I have to tell you that I have met many wonderful >> friends here. You will too. >> >> Have a wonderful day. >> >> Alice >> >> >> >> >> >> 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. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Vivian Let yourself cry. I sure have done my share. laurie > > Reply-To: > Date: Tue, 27 May 2003 17:04:13 -0500 > To: < > > Subject: RE: biopsy results > > Dear Ruth and Alice, > > Thank you for your kind words and hope and encouragement. I can't stop > crying. I went to get my haircut.(the appointment was already > scheduled), but had them cut most of my hair off.I really needed a > change, (in anything) does that sound crazy. I need to stop crying > because I have to go to my son's baseball game, and he has a buddy over > right now. I am so glad the computer is not in that room. > > Cleveland called this morning, before I heard about my biopsy. I asked > her if Dr. Cohen was offering a biopsy for Jack just because I have been > persistent. She assured me that was not the case. She said that many > people come to CCF asking for a biopsy and if he feels it is not > warranted he tells them so and will not schedule it. She said that if > Dr. Cohen has given us the option to have Jack go through the muscle > biopsy that there is evidence to warrant it. > > She also said that people who have clear mito can have a negative biopsy > and some with mild symptoms can have a positive one. > > Anyway, I had been so hopeful, I prayed so hard to have an answer.I know > that I just need to keep going. I also know that I just need to stop > crying at the moment. > > I love you guys, > > Vivian > > Re: Making an appt. >> >> >> >> , >> >> I'm glad you are seeking an appointment. I know >> you >> and your family have been down a long road without >> answers and hopefully, this will be the beginning >> of a >> new road. It's always harder when you don't have >> any >> idea why and the doctor's don't seem to be able to >> help. I'm hoping you get that appointment >> relatively >> quickly. Please let us know when you do. >> >> I'm glad you are enjoying the group. They are >> wonderful. This list has been around for quite >> some >> time and has always been a great source of >> support. >> It's unfortunate that we need a list of this type, >> but >> I have to tell you that I have met many wonderful >> friends here. You will too. >> >> Have a wonderful day. >> >> Alice >> >> >> >> >> >> 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. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Carol We will still be here for you. The mito doctors are in the process of trying to agree on what is and what is not mito. As a result, it seems as if they are in more disagreement than ever. It is just so hard to diagnose. Hugs, laurie > > Reply-To: > Date: Tue, 27 May 2003 23:02:16 -0400 > To: > Subject: Re: biopsy results > > Dear Vivian: > > Boy, can I relate.... > > I'll probably be crying throughout writing this email. > > My biopsy results from Atlanta came in last week. Like you, I have numerous > and prominent symptoms that could be nothing but mito. > > Shoffner says I don't have mito......He saw " this and that " (paraphrasing > here) but doesn't think it could be mito. > > I have been devastated......why? I don't know...I guess part of me is scared > that those who love me and the medical professionals who are treating me are > going to think I'm crazy! > > I'm also going to put out there an observation I had about Shoffner. He was > very negative about a positive diagnosis during my exam/conference with him > prior to the biopsy. He was especially very skeptical about my sons having > mito because they were diagnosed by Dr. Kelley. I just wonder if there is > some professional sniping going on there. In any event, I am sending his > complete report to Kelley and asking him to comment on it. I am praying that > my local mito doctor still believes that I have mito. > > Go ahead and cry Vivian. I have done my share of crying since I got my > results. > > Isn't it possible that all of the people who have mito syptoms, but are > considered negative on biopsy could be another variant? Perhaps another > medical professional should go through that pile of patients and see if there > is a common denominator. > > I feel like someone hit me in the solar plexus. I was wondering how I was > going to tell my mito family about this. I imagined that I would be bumped > from my mito family....probably more than anything, this worry is the most > upsetting for me. I don't know what I would do without you guys!!!! > > Carol > Re: Making an appt. >> >> >> >> , >> >> I'm glad you are seeking an appointment. I know >> you >> and your family have been down a long road without >> answers and hopefully, this will be the beginning >> of a >> new road. It's always harder when you don't have >> any >> idea why and the doctor's don't seem to be able to >> help. I'm hoping you get that appointment >> relatively >> quickly. Please let us know when you do. >> >> I'm glad you are enjoying the group. They are >> wonderful. This list has been around for quite >> some >> time and has always been a great source of >> support. >> It's unfortunate that we need a list of this type, >> but >> I have to tell you that I have met many wonderful >> friends here. You will too. >> >> Have a wonderful day. >> >> Alice >> >> >> >> >> >> 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. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Dear Carol, I have not even articulated the fear that you have that is so close to my heart. I haven’t even told my family, (mom, dad etc.) about the pursuit of another diagnosis. They still think I have MS…they were jerks about that. The kept telling me about people who climb mountains with MS and the black guy on TV. (Somehow they have never seen the other side of the MS spectrum). Anyway, my husbands family has been just as bad, suggesting that Jack just wants to get out of school, that is why he was admitted twice to two hospitals this past winter…(amazing isn’t it that more people are not admitted into the hospital when they want out of school!) But even though I am not sharing this with them, I do feel like people will think I am crazy without the right medical diagnosis. Even those who are close friends, I have to repeat myself, again and again, yes, they have found lesions on the MRI, the neuro exam is abnormal, the heart exam and testing is abnormal…but without a label it is like they forget that stuff. O.K. Carol, why do we care what they think? Let’s look at this through the tears. We may not ever have a neat label. And we will have to take care of ourself and our family the best we can. We need to find a doctor who is in our corner and forget the others. It is a reasonable thing to achieve, and we have each other on this board. We know we are not crazy, we can support each other. Take care…I’m going for another cry! Vivian Re: biopsy results Dear Vivian: Boy, can I relate.... I'll probably be crying throughout writing this email. My biopsy results from Atlanta came in last week. Like you, I have numerous and prominent symptoms that could be nothing but mito. Shoffner says I don't have mito......He saw " this and that " (paraphrasing here) but doesn't think it could be mito. I have been devastated......why? I don't know...I guess part of me is scared that those who love me and the medical professionals who are treating me are going to think I'm crazy! I'm also going to put out there an observation I had about Shoffner. He was very negative about a positive diagnosis during my exam/conference with him prior to the biopsy. He was especially very skeptical about my sons having mito because they were diagnosed by Dr. Kelley. I just wonder if there is some professional sniping going on there. In any event, I am sending his complete report to Kelley and asking him to comment on it. I am praying that my local mito doctor still believes that I have mito. Go ahead and cry Vivian. I have done my share of crying since I got my results. Isn't it possible that all of the people who have mito syptoms, but are considered negative on biopsy could be another variant? Perhaps another medical professional should go through that pile of patients and see if there is a common denominator. I feel like someone hit me in the solar plexus. I was wondering how I was going to tell my mito family about this. I imagined that I would be bumped from my mito family....probably more than anything, this worry is the most upsetting for me. I don't know what I would do without you guys!!!! Carol Re: Making an appt. > > > > , > > I'm glad you are seeking an appointment. I know > you > and your family have been down a long road without > answers and hopefully, this will be the beginning > of a > new road. It's always harder when you don't have > any > idea why and the doctor's don't seem to be able to > help. I'm hoping you get that appointment > relatively > quickly. Please let us know when you do. > > I'm glad you are enjoying the group. They are > wonderful. This list has been around for quite > some > time and has always been a great source of > support. > It's unfortunate that we need a list of this type, > but > I have to tell you that I have met many wonderful > friends here. You will too. > > Have a wonderful day. > > Alice > > > > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Dear Sweet Laurie, Thank you for your kind words, especially letting me know that you have cried over this stuff too! (You seem so strong and clear and are such an encouragement to us on the board, it helps us keeping on that one we respect struggled over this too). Off to prayer and tears, Love, Vivian Re: Making an appt. >> >> >> >> , >> >> I'm glad you are seeking an appointment. I know >> you >> and your family have been down a long road without >> answers and hopefully, this will be the beginning >> of a >> new road. It's always harder when you don't have >> any >> idea why and the doctor's don't seem to be able to >> help. I'm hoping you get that appointment >> relatively >> quickly. Please let us know when you do. >> >> I'm glad you are enjoying the group. They are >> wonderful. This list has been around for quite >> some >> time and has always been a great source of >> support. >> It's unfortunate that we need a list of this type, >> but >> I have to tell you that I have met many wonderful >> friends here. You will too. >> >> Have a wonderful day. >> >> Alice >> >> >> >> >> >> 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. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Vivian -- Of course she will want to see you. Remember, my stepdaughter was diagnosed in Milwaukee with out a muscle biopsy. Hang in there. I have a good feeling about your appointment in Milwaukee. Peace -- Nan Let me not criticize my neighbor until I have walked a mile in his moccasins. Re: Making an appt.> > > > ,> > I'm glad you are seeking an appointment. I know> you> and your family have been down a long road without> answers and hopefully, this will be the beginning> of a> new road. It's always harder when you don't have> any> idea why and the doctor's don't seem to be able to> help. I'm hoping you get that appointment> relatively> quickly. Please let us know when you do.> > I'm glad you are enjoying the group. They are> wonderful. This list has been around for quite> some> time and has always been a great source of> support.> It's unfortunate that we need a list of this type,> but> I have to tell you that I have met many wonderful> friends here. You will too.> > Have a wonderful day.> > Alice> > > > > > 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.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 Carol, I am very sorry to read this message about your biopsy results. This must be terribly hard for you. No matter what it reads, you have not lost your mito family. Laurie has already told you what I would like to say so I won't repeat it but please remember, there is a great deal to learn about this disease. There is yet to be a set criteria for the diagnosis. Hugs! Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Nan, I was hoping to hear from you. I did not know that your daughter did not have a muscle biopsy, or rather did not remember. Thank you for this appointment. In truth, at the moment Dr. P. is all I have left, I don’t know which way to turn unless she can advise me. I just keep thinking of the way that she did not stop looking for your stepdaughter when others did. , her secretary, has been so sweet as well. (truth is I’m afraid to hope, and yet don’t know how not to). I am so grateful to God that Friday is not far off. Love, Vivian Re: biopsy results Vivian -- Of course she will want to see you. Remember, my stepdaughter was diagnosed in Milwaukee with out a muscle biopsy. Hang in there. I have a good feeling about your appointment in Milwaukee. Peace -- Nan Let me not criticize my neighbor until I have walked a mile in his moccasins. Re: Making an appt. > > > > , > > I'm glad you are seeking an appointment. I know > you > and your family have been down a long road without > answers and hopefully, this will be the beginning > of a > new road. It's always harder when you don't have > any > idea why and the doctor's don't seem to be able to > help. I'm hoping you get that appointment > relatively > quickly. Please let us know when you do. > > I'm glad you are enjoying the group. They are > wonderful. This list has been around for quite > some > time and has always been a great source of > support. > It's unfortunate that we need a list of this type, > but > I have to tell you that I have met many wonderful > friends here. You will too. > > Have a wonderful day. > > Alice > > > > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 , I consider you guys some of my dearest friends, (after all friends are the ones who can relate to what you are walking in). I am here until there comes a time when because of some “other” diagnosis this is not the appropriate place. Thank you for your encouragement. Vivian Re: biopsy results Vivian, I know the road to diagnosis is a rough road to ride, but dont give up. We are all here with you and please dont leave us just because you had a negative result. we all have. I am traveling a rough road to diagnosis myself and cant imagine doing it without all my friends here. if you think it is hard with us it will be harder without. Please stay we all enjoy you and understand your feelings 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. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Vivian, I was diagnosed without a biopsy. My sister is the one who had it. But, Dr Tick commented that my lactic acid serum levels from the spinal tap and also blood levels were much lower than my sisters. So, if I had a muscle biopsy I do not know if anything would show up since I am much heavier than she was--130 lbs vs 100 lbs, and I also have milder symptoms. Janet Sample Re: Making an appt.> > > > ,> > I'm glad you are seeking an appointment. I know> you> and your family have been down a long road without> answers and hopefully, this will be the beginning> of a> new road. It's always harder when you don't have> any> idea why and the doctor's don't seem to be able to> help. I'm hoping you get that appointment> relatively> quickly. Please let us know when you do.> > I'm glad you are enjoying the group. They are> wonderful. This list has been around for quite> some> time and has always been a great source of> support.> It's unfortunate that we need a list of this type,> but> I have to tell you that I have met many wonderful> friends here. You will too.> > Have a wonderful day.> > Alice> > > > > > 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.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 These neuromuscular conditions are so weird. My MDA doctor lists me as " necrotizing myopathy " and also " mitochondrial disease " . I get the opinion Dr. Shoffner thinks I don't have " primary " mitochondrial disease, but mitochondrial disease as a result of another primary condition. I (and several doctors) were *sure* I had myasthenia gravis for many years, and I still get support from their group even though tests have proven I don't have it. IMHO, you're welcome here if you're still looking to confirm what you have, and even afterwards, it is helpful to me to know what other diagnoses are out there for our similar symptoms. I'm a little confused though - in Atlanta, they did work-ups on my muscle biopsy for several other conditions than " mito " - familial hemiplegic migraine is a frontrunner now. Did they check for other things, like anti-phospholipid disorder or other neuromuscular diseases like MS? I'm also the opposite to Vivian - almost all my tests are negative, except for the muscle biopsy results and MR-SPECT. Another funny thing is that they didn't call me with results, they just sent them, and they were definitely *abnormal* in several ways. I find it odd you guys would get calls that say " everything is normal " . Take care, RH > > Hi Vivian, I am also up in the middle of the night > > unable to sleep. Tell > > me more about this Harvard board. How do you get to > > it? Ruth > > Re: Making an appt. > > > > > > > > , > > > > I'm glad you are seeking an appointment. I know > > you > > and your family have been down a long road without > > answers and hopefully, this will be the beginning > > of a > > new road. It's always harder when you don't have > > any > > idea why and the doctor's don't seem to be able to > > help. I'm hoping you get that appointment > > relatively > > quickly. Please let us know when you do. > > > > I'm glad you are enjoying the group. They are > > wonderful. This list has been around for quite > > some > > time and has always been a great source of > > support. > > It's unfortunate that we need a list of this type, > > but > > I have to tell you that I have met many wonderful > > friends here. You will too. > > > > Have a wonderful day. > > > > Alice > > > > > > > > > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 These neuromuscular conditions are so weird. My MDA doctor lists me as " necrotizing myopathy " and also " mitochondrial disease " . I get the opinion Dr. Shoffner thinks I don't have " primary " mitochondrial disease, but mitochondrial disease as a result of another primary condition. I (and several doctors) were *sure* I had myasthenia gravis for many years, and I still get support from their group even though tests have proven I don't have it. IMHO, you're welcome here if you're still looking to confirm what you have, and even afterwards, it is helpful to me to know what other diagnoses are out there for our similar symptoms. I'm a little confused though - in Atlanta, they did work-ups on my muscle biopsy for several other conditions than " mito " - familial hemiplegic migraine is a frontrunner now. Did they check for other things, like anti-phospholipid disorder or other neuromuscular diseases like MS? I'm also the opposite to Vivian - almost all my tests are negative, except for the muscle biopsy results and MR-SPECT. Another funny thing is that they didn't call me with results, they just sent them, and they were definitely *abnormal* in several ways. I find it odd you guys would get calls that say " everything is normal " . Take care, RH > > Hi Vivian, I am also up in the middle of the night > > unable to sleep. Tell > > me more about this Harvard board. How do you get to > > it? Ruth > > Re: Making an appt. > > > > > > > > , > > > > I'm glad you are seeking an appointment. I know > > you > > and your family have been down a long road without > > answers and hopefully, this will be the beginning > > of a > > new road. It's always harder when you don't have > > any > > idea why and the doctor's don't seem to be able to > > help. I'm hoping you get that appointment > > relatively > > quickly. Please let us know when you do. > > > > I'm glad you are enjoying the group. They are > > wonderful. This list has been around for quite > > some > > time and has always been a great source of > > support. > > It's unfortunate that we need a list of this type, > > but > > I have to tell you that I have met many wonderful > > friends here. You will too. > > > > Have a wonderful day. > > > > Alice > > > > > > > > > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 RH Isn’t that strange! My husband asked me if I knew of anyone else who has ever had a hard time finding the right diagnosis. He thought I was the only one!! I told him that he should look at this list. About the call…I know what you mean, but I don’t know if one can read something into it or not. I have heard only of Dr. Cohen calling patients with updates, he sent me a letter on Jack, I wondered if that meant that Jack was not as sick as other kids he sees or if it means anything at all. When I worked for a physician all positive results were called to by the doctor to the patient and negative results were sent in the mail. I called to ask about the muscle biopsy, that may have been the reason that I received a call back. By the way what is familial hemiplegic migraine anyway? Thanks, Vivian Re: Making an appt. > > > > > > > > , > > > > I'm glad you are seeking an appointment. I know > > you > > and your family have been down a long road without > > answers and hopefully, this will be the beginning > > of a > > new road. It's always harder when you don't have > > any > > idea why and the doctor's don't seem to be able to > > help. I'm hoping you get that appointment > > relatively > > quickly. Please let us know when you do. > > > > I'm glad you are enjoying the group. They are > > wonderful. This list has been around for quite > > some > > time and has always been a great source of > > support. > > It's unfortunate that we need a list of this type, > > but > > I have to tell you that I have met many wonderful > > friends here. You will too. > > > > Have a wonderful day. > > > > Alice > > > > > > > > > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 ildreth: What wonderful news..Congratulations..Write back as soon as you see your Dr./onc. so we can know what happens. Have a great weekend,do something special..Hugs and prayers from Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Hildreth, That's the kind of news that give you a reason to go out and celebrate. I am glad they did not make you wait till Monday. The waiting is always the hardest, especially over a weekend. Best Wishes, Joyce > > I got my biopsy results this evening from the needle biopsy I had done Wed. I admit for some reason this one really had me worried. Thankfully it is not cancer. Have not talked to my Dr to find out details but hearing not cancer was enough till Monday when I have appt to talk about the stent. It is something fiber is all I know right now. To my knowledge at the moment I am cancer free! > > Hildreth > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Hildreth, That's the kind of news that give you a reason to go out and celebrate. I am glad they did not make you wait till Monday. The waiting is always the hardest, especially over a weekend. Best Wishes, Joyce > > I got my biopsy results this evening from the needle biopsy I had done Wed. I admit for some reason this one really had me worried. Thankfully it is not cancer. Have not talked to my Dr to find out details but hearing not cancer was enough till Monday when I have appt to talk about the stent. It is something fiber is all I know right now. To my knowledge at the moment I am cancer free! > > Hildreth > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Hildreth, That's the kind of news that give you a reason to go out and celebrate. I am glad they did not make you wait till Monday. The waiting is always the hardest, especially over a weekend. Best Wishes, Joyce > > I got my biopsy results this evening from the needle biopsy I had done Wed. I admit for some reason this one really had me worried. Thankfully it is not cancer. Have not talked to my Dr to find out details but hearing not cancer was enough till Monday when I have appt to talk about the stent. It is something fiber is all I know right now. To my knowledge at the moment I am cancer free! > > Hildreth > > Quote Link to comment Share on other sites More sharing options...
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