Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 i feel like i may be about to enter a new phase of mito. last night at my hubby's urging, he took me to the hospital last night. i only waited 10 minutes before being taken back. the dr i had seen knew nothing about mito saying " you have what, a mito crash? " " are all your cells crashing? " he asked me what they do for it. then when the nurse came back...and was going to give benidryl and morphine in an iv with no fluid bag. i said i needed fluids. i stated it from the very beginning. they did and about 10 minutes later, mito snarled and i was immense pain. I was moaning in my regular speaking voice and the dr reprimanded me for being too noisy. " You know calling out and crying isn't helping your pain. " I said i was sorry. But other ppl continued to holler out -did they get repremanded too? they gave me phenergan and something besides morphine/dilaudid, which I normally get..not sure what. But i did get a few winks to wake up in pain again, they had already removed the iv and discharged me with only phenergan suppositories, no pain meds. No ASKING me if i was in pain. they just discharged me. I was holding my head crying in pain and they didn't care as the nurse carrieed me to the waiting area. The pain level was astronomical! Since 10pm I have had near constant stinging on the brain, doubled over in pain from my ribcage and hips/spine/back, electrical shocks in spine, muscle biopsy site stinging,, my right leg in the thigh stinging and I am losing control to open my right hand. I type one handed anyway, but it is highly concerning me. i cannot get my other hand to even open from a fist/closed position. so i am going to call my internal meds dr's wife at home, member of our sunday school class. I am very grateful to our church as the pastors have been calling me and then the dr's wife called me yesterday. The sunday school class is going to make casseroles, etc for our meals for a few days. Our youth pastor is gong to get william a ride to and from mother's day out, so won't miss going out to school. my brain continues to sting like a hornet sting in 2 places, and the above mentioned as well. i am calling my neuro in Madison, WI and see if she can't send a fax to the ER-because i know I will most likely end up there again today. Plus calling my pulmo's office to get one of his collegues to call the ER too. something is terribly wrong, mito i know. Because I keep being flooded with my warning signs...over and over again.. --- update it is near 3pm....i have massive pain, hurts to breathe, fatigue, ribcage pain, spine/hip/back pain, slurred speech to an extent, overload of tremors, intense electrical shocks, Stinging on the brain too, am able to open fist a little. I hate this because i tried to show them my bottles to be refilled and the er drr didn't care. potassium level was ok. wished i would have remembered to have them check magnesium/lactic acid/pyrvate. I told myself i could handle a major crash again, but i have never had some of these symptoms before like having a hard time swallowing solid food too, unless its mushy like in soup. any suugestionsd greatly appreciated... thanks ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Ann, I am so sorry you are having such a horrific time! I wish I knew something to help you. The ER situation is just intolerable. It makes me so angry to know what they do sometimes. I hope calling your neuro and pulmo and any other doctor who sees you, so that they can give the proper directions to the ER people. There is something dreadfully wrong with the way medicine is " practiced " these days. You will be in my thoughts and prayers. Sunny > i feel like i may be about to enter a new phase of mito. last night at > my hubby's urging, he took me to the hospital last night. > i only waited 10 minutes before being taken back. > > the dr i had seen knew nothing about mito saying " you have what, a > mito crash? " " are all your cells crashing? " > he asked me what they do for it. then when the nurse came back...and > was going to give benidryl and morphine in an iv with no fluid bag. i > said i needed fluids. i stated it from the very beginning. they did > and about 10 minutes later, mito snarled and i was immense pain. I was > moaning in my regular speaking voice and the dr reprimanded me for > being too noisy. " You know calling out and crying isn't helping your > pain. " I said i was sorry. But other ppl continued to holler out -did > they get repremanded too? > > they gave me phenergan and something besides morphine/dilaudid, which > I normally get..not sure what. But i did get a few winks to wake up in > pain again, they had already removed the iv and discharged me with > only phenergan suppositories, no pain meds. No ASKING me if i was in > pain. they just discharged me. I was holding my head crying in pain > and they didn't care as the nurse carrieed me to the waiting area. The > pain level was astronomical! Since 10pm I have had near constant > stinging on the brain, doubled over in pain from my ribcage and > hips/spine/back, electrical shocks in spine, muscle biopsy site > stinging,, my right leg in the thigh stinging and I am losing control > to open my right hand. I type one handed anyway, but it is highly > concerning me. i cannot get my other hand to even open from a > fist/closed position. > > so i am going to call my internal meds dr's wife at home, member of > our sunday school class. I am very grateful to our church as the > pastors have been calling me and then the dr's wife called me > yesterday. The sunday school class is going to make casseroles, etc > for our meals for a few days. Our youth pastor is gong to get william > a ride to and from mother's day out, so won't miss going out > to school. > > my brain continues to sting like a hornet sting in 2 places, and the > above mentioned as well. > > i am calling my neuro in Madison, WI and see if she can't send a fax > to the ER-because i know I will most likely end up there again today. > Plus calling my pulmo's office to get one of his collegues to call the > ER too. > > something is terribly wrong, mito i know. Because I keep being > flooded with my warning signs...over and over again.. > > --- > update it is near 3pm....i have massive pain, hurts to breathe, > fatigue, ribcage pain, spine/hip/back pain, slurred speech to an > extent, overload of tremors, intense electrical shocks, Stinging on > the brain too, am able to open fist a little. I hate this because i > tried to show them my bottles to be refilled and the er drr didn't > care. > potassium level was ok. wished i would have remembered to have them > check magnesium/lactic acid/pyrvate. I told myself i could handle a > major crash again, but i have never had some of these symptoms before > like having a hard time swallowing solid food too, unless its mushy > like in soup. > > any suugestionsd greatly appreciated... > > thanks > ann > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Ann, Sorry to hear that you are in such pain. ER visits can be a scary thing anyway without docs knowing nothing about mito and how to treat you. You said you got fluids, do you know what they gave you? Folks with mito shouldn't have lactated ringers as some came have problems with lactic acidosis occurring. Maybe the attached article would help to take to the ER. Ann wrote: >i feel like i may be about to enter a new phase of mito. last night at my hubby's urging, he took me to the hospital last night. >i only waited 10 minutes before being taken back. > >the dr i had seen knew nothing about mito saying " you have what, a mito crash? " " are all your cells crashing? " >he asked me what they do for it. then when the nurse came back...and was going to give benidryl and morphine in an iv with no fluid bag. i said i needed fluids. i stated it from the very beginning. they did and about 10 minutes later, mito snarled and i was immense pain. I was moaning in my regular speaking voice and the dr reprimanded me for being too noisy. " You know calling out and crying isn't helping your pain. " I said i was sorry. But other ppl continued to holler out -did they get repremanded too? > >they gave me phenergan and something besides morphine/dilaudid, which I normally get..not sure what. But i did get a few winks to wake up in pain again, they had already removed the iv and discharged me with only phenergan suppositories, no pain meds. No ASKING me if i was in pain. they just discharged me. I was holding my head crying in pain and they didn't care as the nurse carrieed me to the waiting area. The pain level was astronomical! Since 10pm I have had near constant stinging on the brain, doubled over in pain from my ribcage and hips/spine/back, electrical shocks in spine, muscle biopsy site stinging,, my right leg in the thigh stinging and I am losing control to open my right hand. I type one handed anyway, but it is highly concerning me. i cannot get my other hand to even open from a fist/closed position. > >so i am going to call my internal meds dr's wife at home, member of our sunday school class. I am very grateful to our church as the pastors have been calling me and then the dr's wife called me yesterday. The sunday school class is going to make casseroles, etc for our meals for a few days. Our youth pastor is gong to get william a ride to and from mother's day out, so won't miss going out to school. > >my brain continues to sting like a hornet sting in 2 places, and the above mentioned as well. > >i am calling my neuro in Madison, WI and see if she can't send a fax to the ER-because i know I will most likely end up there again today. Plus calling my pulmo's office to get one of his collegues to call the ER too. > >something is terribly wrong, mito i know. Because I keep being flooded with my warning signs...over and over again.. > >--- >update it is near 3pm....i have massive pain, hurts to breathe, fatigue, ribcage pain, spine/hip/back pain, slurred speech to an extent, overload of tremors, intense electrical shocks, Stinging on the brain too, am able to open fist a little. I hate this because i tried to show them my bottles to be refilled and the er drr didn't care. >potassium level was ok. wished i would have remembered to have them check magnesium/lactic acid/pyrvate. I told myself i could handle a major crash again, but i have never had some of these symptoms before like having a hard time swallowing solid food too, unless its mushy like in soup. > >any suugestionsd greatly appreciated... > >thanks >ann > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Ann, I'm sorry you had such a bad experience in ER. I find it's very difficult to go to ER with a rare disorder. They just don't know what to do. We have developed an ER strategy that works well for us. I have an " emergency packet " so that if I happen to see a doctor who doesn't know me or my disease, they have some basic information about diagnosis, treatment and what they can do to help. Even the ER docs who know me have commented that the packet was very helpful in refreshing their memories and they appreciated having it. Many mito patients have their doctors write an emergency protocol letter to carry to any ER in case such a visit is necessary. My son carries one. I have a " packet " because my situation is more complicated than a one-page letter will cover. It took some time and effort to get this together, but it has been worth it. I hope one of your doctors can provide an ER protocol for you. Most ER docs will do their best to help if they have written instructions from your doctor. It also eased my anxiety about getting help when I need it. Hope you are better soon. Barbara > ER Visit > > > i am calling my neuro in Madison, WI and see if she can't send a fax to the ER- > because i know I will most likely end up there again today. Plus calling my pulmo's > office to get one of his collegues to call the ER too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Are you on the mito cocktail? If so, you might ask the doc about upping your COQ10 during this crash. When I have a lot of muscle pain, I also up my protein intake, but that varies from person to person. I use a protein powder that also has a lot of the amino acids we need to help break down the protein. It get into the system much quicker in my case at least then eating protein. YMMV. Good luck! HFMito@... wrote: >My problem was that my pulmo was not in his office yesterday afternoon. Normally he will call and speak directly with >whomever is in the ER. I did carry a sheet with the info about what they do and prescribe for my crashes. He also has >recommendations faxed to ERs. I do have a protocol, but this local hospital refuses to follow it. It is the only >hospital here. > >I had sodium chloride iv. > >--- >I contacted our Sr pastor this afternoon, who said he would call Dr B's wife at home and explain the situation about >what i am going through. He said he will ask her to call me asap. It's a sticky situation because Dr B just took on my >case and I haven't seen him yet as a patient. But our pastor said he felt sure Mrs. B will call me. > >I have 3 morphine tablets left. Took one at around 1:30. Cannot have another till after midnight. Hopefully Dr B will >call something in. > >I do appreciate all your responses. > >Hugs >Ann > >Going to close this and rest. > > > >Mom with Mito > >On Sat, 10 Sep 2005 16:35 , 'Barbara Seaman' wheatchild@...> sent: > > > >> >> >>Ann, I'm sorry you had such a bad experience in ER. I find it's very >> >>difficult to go to ER with a rare disorder. They just don't know what to do. >> >> >> >> >> >>We have developed an ER strategy that works well for us. I have an >> >> " emergency packet " so that if I happen to see a doctor who doesn't know me >> >>or my disease, they have some basic information about diagnosis, treatment >> >>and what they can do to help. Even the ER docs who know me have commented >> >>that the packet was very helpful in refreshing their memories and they >> >>appreciated having it. >> >> >> >>Many mito patients have their doctors write an emergency protocol letter to >> >>carry to any ER in case such a visit is necessary. My son carries one. I >> >>have a " packet " because my situation is more complicated than a one-page >> >>letter will cover. It took some time and effort to get this together, but it >> >>has been worth it. >> >> >> >>I hope one of your doctors can provide an ER protocol for you. Most ER docs >> >>will do their best to help if they have written instructions from your >> >>doctor. It also eased my anxiety about getting help when I need it. >> >> >> >>Hope you are better soon. >> >>Barbara >> >> >> >> >> >> >> >> >> >>> ER Visit >>> >>> >>>i am calling my neuro in Madison, WI and see if she can't send a fax to >>> >>> >>the ER- >> >> >> >>>because i know I will most likely end up there again today. Plus calling >>> >>> >>my pulmo's >> >> >> >>>office to get one of his collegues to call the ER too. >>> >>> >> >> >> >> >> >> >> >> >> >> >> >> >>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 September 10, 2005 Report Share Posted September 10, 2005 My problem was that my pulmo was not in his office yesterday afternoon. Normally he will call and speak directly with whomever is in the ER. I did carry a sheet with the info about what they do and prescribe for my crashes. He also has recommendations faxed to ERs. I do have a protocol, but this local hospital refuses to follow it. It is the only hospital here. I had sodium chloride iv. --- I contacted our Sr pastor this afternoon, who said he would call Dr B's wife at home and explain the situation about what i am going through. He said he will ask her to call me asap. It's a sticky situation because Dr B just took on my case and I haven't seen him yet as a patient. But our pastor said he felt sure Mrs. B will call me. I have 3 morphine tablets left. Took one at around 1:30. Cannot have another till after midnight. Hopefully Dr B will call something in. I do appreciate all your responses. Hugs Ann Going to close this and rest. Mom with Mito On Sat, 10 Sep 2005 16:35 , 'Barbara Seaman' wheatchild@...> sent: > > > > >Ann, I'm sorry you had such a bad experience in ER. I find it's very > >difficult to go to ER with a rare disorder. They just don't know what to do. > > > > > >We have developed an ER strategy that works well for us. I have an > > " emergency packet " so that if I happen to see a doctor who doesn't know me > >or my disease, they have some basic information about diagnosis, treatment > >and what they can do to help. Even the ER docs who know me have commented > >that the packet was very helpful in refreshing their memories and they > >appreciated having it. > > > >Many mito patients have their doctors write an emergency protocol letter to > >carry to any ER in case such a visit is necessary. My son carries one. I > >have a " packet " because my situation is more complicated than a one-page > >letter will cover. It took some time and effort to get this together, but it > >has been worth it. > > > >I hope one of your doctors can provide an ER protocol for you. Most ER docs > >will do their best to help if they have written instructions from your > >doctor. It also eased my anxiety about getting help when I need it. > > > >Hope you are better soon. > >Barbara > > > > > > > >> ER Visit > >> > >> > >> i am calling my neuro in Madison, WI and see if she can't send a fax to > >the ER- > >> because i know I will most likely end up there again today. Plus calling > >my pulmo's > >> office to get one of his collegues to call the ER too. > > > > > > > > > > > > > > >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 September 10, 2005 Report Share Posted September 10, 2005 Ann, I'm so sorry about your crash. I too have to explain the whole " mito crash " thing to docs. The ER is usually good to me, I sometimes have problems after arriving on the floor when I'm admitted. Your symptoms sound very familiar when I've crashed. I've been balling in tears because of severe migrains and I've been blown off too. My feeling is that very subtle electrolyte imbalances can have devastating effects on mito. Dehydration or overhydration definately cause some of the symptoms. If you can't wait to talk with the dr's wife, go to the ER. You might get a different set of doc's that will take you more seriously. You could always go to a different ER too. It might be worth it. Hang in there ! Hugs, bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 I was on the mito cocktail in 2003 for awhile, tried it twice...however it made my symptoms much worse unfortunately. good pt about the protein. btw-just got a call from Dr B, whose running the script to the pharmacy himself. Thank God for caring drs.. Ann Mom with Mito On Sat, 10 Sep 2005 15:28 , dgregori dgregori@...> sent: > > > > >Are you on the mito cocktail? If so, you might ask the doc about upping > >your COQ10 during this crash. When I have a lot of muscle pain, I also > >up my protein intake, but that varies from person to person. I use a > >protein powder that also has a lot of the amino acids we need to help > >break down the protein. It get into the system much quicker in my case > >at least then eating protein. YMMV. > > > >Good luck! > > > > > > > >HFMito@... wrote: > > > >>My problem was that my pulmo was not in his office yesterday afternoon. Normally he will call and speak directly with > >>whomever is in the ER. I did carry a sheet with the info about what they do and prescribe for my crashes. He also has > >>recommendations faxed to ERs. I do have a protocol, but this local hospital refuses to follow it. It is the only > >>hospital here. > >> > >>I had sodium chloride iv. > >> > >>--- > >>I contacted our Sr pastor this afternoon, who said he would call Dr B's wife at home and explain the situation about > >>what i am going through. He said he will ask her to call me asap. It's a sticky situation because Dr B just took on my > >>case and I haven't seen him yet as a patient. But our pastor said he felt sure Mrs. B will call me. > >> > >>I have 3 morphine tablets left. Took one at around 1:30. Cannot have another till after midnight. Hopefully Dr B will > >>call something in. > >> > >>I do appreciate all your responses. > >> > >>Hugs > >>Ann > >> > >>Going to close this and rest. > >> > >> > >> > >>Mom with Mito > >> > >>On Sat, 10 Sep 2005 16:35 , 'Barbara Seaman' wheatchild@...> sent: > >> > >> > >> > >>> > >>> > >>>Ann, I'm sorry you had such a bad experience in ER. I find it's very > >>> > >>>difficult to go to ER with a rare disorder. They just don't know what to do. > >>> > >>> > >>> > >>> > >>> > >>>We have developed an ER strategy that works well for us. I have an > >>> > >>> " emergency packet " so that if I happen to see a doctor who doesn't know me > >>> > >>>or my disease, they have some basic information about diagnosis, treatment > >>> > >>>and what they can do to help. Even the ER docs who know me have commented > >>> > >>>that the packet was very helpful in refreshing their memories and they > >>> > >>>appreciated having it. > >>> > >>> > >>> > >>>Many mito patients have their doctors write an emergency protocol letter to > >>> > >>>carry to any ER in case such a visit is necessary. My son carries one. I > >>> > >>>have a " packet " because my situation is more complicated than a one-page > >>> > >>>letter will cover. It took some time and effort to get this together, but it > >>> > >>>has been worth it. > >>> > >>> > >>> > >>>I hope one of your doctors can provide an ER protocol for you. Most ER docs > >>> > >>>will do their best to help if they have written instructions from your > >>> > >>>doctor. It also eased my anxiety about getting help when I need it. > >>> > >>> > >>> > >>>Hope you are better soon. > >>> > >>>Barbara > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>>> ER Visit > >>>> > >>>> > >>>>i am calling my neuro in Madison, WI and see if she can't send a fax to > >>>> > >>>> > >>>the ER- > >>> > >>> > >>> > >>>>because i know I will most likely end up there again today. Plus calling > >>>> > >>>> > >>>my pulmo's > >>> > >>> > >>> > >>>>office to get one of his collegues to call the ER too. > >>>> > >>>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>>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 September 10, 2005 Report Share Posted September 10, 2005 Ann I use the term " metabolically compremised " instead of mito crash when in the ER. Did they check your urine or do a CPT blood test. This can tell them if you are breaking down muscle. My mother was in a big crash and couldn't stand to be touched or move. They cathed her and didn't even send the urine to the lab or do blood work. Her urine was coke colored. They ran several bags of fluid (mostly glucose in water) and this started to clear the broken down muscle and she began to feel better. This is very scary. laurie > > I was on the mito cocktail in 2003 for awhile, tried it twice...however it made my symptoms much > worse unfortunately. > good pt about the protein. > > btw-just got a call from Dr B, whose running the script to the pharmacy himself. Thank God for > caring drs.. > > Ann > > Mom with Mito > > On Sat, 10 Sep 2005 15:28 , dgregori dgregori@...> sent: > > > > > > > > > > >Are you on the mito cocktail? If so, you might ask the doc about upping > > > >your COQ10 during this crash. When I have a lot of muscle pain, I also > > > >up my protein intake, but that varies from person to person. I use a > > > >protein powder that also has a lot of the amino acids we need to help > > > >break down the protein. It get into the system much quicker in my case > > > >at least then eating protein. YMMV. > > > > > > > >Good luck! > > > > > > > > > > > > > > > >HFMito@... wrote: > > > > > > > >>My problem was that my pulmo was not in his office yesterday afternoon. Normally he will call and speak directly > with > > > >>whomever is in the ER. I did carry a sheet with the info about what they do and prescribe for my crashes. He also > has > > > >>recommendations faxed to ERs. I do have a protocol, but this local hospital refuses to follow it. It is the only > > > >>hospital here. > > > >> > > > >>I had sodium chloride iv. > > > >> > > > >>--- > > > >>I contacted our Sr pastor this afternoon, who said he would call Dr B's wife at home and explain the situation about > > > >>what i am going through. He said he will ask her to call me asap. It's a sticky situation because Dr B just took on > my > > > >>case and I haven't seen him yet as a patient. But our pastor said he felt sure Mrs. B will call me. > > > >> > > > >>I have 3 morphine tablets left. Took one at around 1:30. Cannot have another till after midnight. Hopefully Dr B > will > > > >>call something in. > > > >> > > > >>I do appreciate all your responses. > > > >> > > > >>Hugs > > > >>Ann > > > >> > > > >>Going to close this and rest. > > > >> > > > >> > > > >> > > > >>Mom with Mito > > > >> > > > >>On Sat, 10 Sep 2005 16:35 , 'Barbara Seaman' wheatchild@...> sent: > > > >> > > > >> > > > >> > > > >>> > > > >>> > > > >>>Ann, I'm sorry you had such a bad experience in ER. I find it's very > > > >>> > > > >>>difficult to go to ER with a rare disorder. They just don't know what to do. > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>>We have developed an ER strategy that works well for us. I have an > > > >>> > > > >>> " emergency packet " so that if I happen to see a doctor who doesn't know me > > > >>> > > > >>>or my disease, they have some basic information about diagnosis, treatment > > > >>> > > > >>>and what they can do to help. Even the ER docs who know me have commented > > > >>> > > > >>>that the packet was very helpful in refreshing their memories and they > > > >>> > > > >>>appreciated having it. > > > >>> > > > >>> > > > >>> > > > >>>Many mito patients have their doctors write an emergency protocol letter to > > > >>> > > > >>>carry to any ER in case such a visit is necessary. My son carries one. I > > > >>> > > > >>>have a " packet " because my situation is more complicated than a one-page > > > >>> > > > >>>letter will cover. It took some time and effort to get this together, but it > > > >>> > > > >>>has been worth it. > > > >>> > > > >>> > > > >>> > > > >>>I hope one of your doctors can provide an ER protocol for you. Most ER docs > > > >>> > > > >>>will do their best to help if they have written instructions from your > > > >>> > > > >>>doctor. It also eased my anxiety about getting help when I need it. > > > >>> > > > >>> > > > >>> > > > >>>Hope you are better soon. > > > >>> > > > >>>Barbara > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>>> ER Visit > > > >>>> > > > >>>> > > > >>>>i am calling my neuro in Madison, WI and see if she can't send a fax to > > > >>>> > > > >>>> > > > >>>the ER- > > > >>> > > > >>> > > > >>> > > > >>>>because i know I will most likely end up there again today. Plus calling > > > >>>> > > > >>>> > > > >>>my pulmo's > > > >>> > > > >>> > > > >>> > > > >>>>office to get one of his collegues to call the ER too. > > > >>>> > > > >>>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>>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 September 11, 2005 Report Share Posted September 11, 2005 What do you mean by " I was on the mito cocktail " ? There are many things (supplements, vitamins, and medications) on the list (15+?), and my understanding is that one tries one at a time (while under a doctor's care), and sees which ones help or don't help. For example, for me, I tried CoQ10 and Carnitor first, they both were problems for me. I tried multi B vitamins, they seemed to work at first but then I had issues. I tried NADH and that helped me out. I feel good about my level of symptom control, so I am now only on NADH. I think there are people on a few of the list, but very few if any on " all " of them. Do others have thoughts on this, or am I misinterpreting how the mito cocktail should be used (this is per my info from Atlanta). Take care, RH > > > > > > > >>My problem was that my pulmo was not in his office yesterday afternoon. Normally he will call and speak directly > with > > > >>whomever is in the ER. I did carry a sheet with the info about what they do and prescribe for my crashes. He also > has > > > >>recommendations faxed to ERs. I do have a protocol, but this local hospital refuses to follow it. It is the only > > > >>hospital here. > > > >> > > > >>I had sodium chloride iv. > > > >> > > > >>--- > > > >>I contacted our Sr pastor this afternoon, who said he would call Dr B's wife at home and explain the situation about > > > >>what i am going through. He said he will ask her to call me asap. It's a sticky situation because Dr B just took on > my > > > >>case and I haven't seen him yet as a patient. But our pastor said he felt sure Mrs. B will call me. > > > >> > > > >>I have 3 morphine tablets left. Took one at around 1:30. Cannot have another till after midnight. Hopefully Dr B > will > > > >>call something in. > > > >> > > > >>I do appreciate all your responses. > > > >> > > > >>Hugs > > > >>Ann > > > >> > > > >>Going to close this and rest. > > > >> > > > >> > > > >> > > > >>Mom with Mito > > > >> > > > >>On Sat, 10 Sep 2005 16:35 , 'Barbara Seaman' sent: > > > >> > > > >> > > > >> > > > >>> > > > >>> > > > >>>Ann, I'm sorry you had such a bad experience in ER. I find it's very > > > >>> > > > >>>difficult to go to ER with a rare disorder. They just don't know what to do. > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>>We have developed an ER strategy that works well for us. I have an > > > >>> > > > >>> " emergency packet " so that if I happen to see a doctor who doesn't know me > > > >>> > > > >>>or my disease, they have some basic information about diagnosis, treatment > > > >>> > > > >>>and what they can do to help. Even the ER docs who know me have commented > > > >>> > > > >>>that the packet was very helpful in refreshing their memories and they > > > >>> > > > >>>appreciated having it. > > > >>> > > > >>> > > > >>> > > > >>>Many mito patients have their doctors write an emergency protocol letter to > > > >>> > > > >>>carry to any ER in case such a visit is necessary. My son carries one. I > > > >>> > > > >>>have a " packet " because my situation is more complicated than a one-page > > > >>> > > > >>>letter will cover. It took some time and effort to get this together, but it > > > >>> > > > >>>has been worth it. > > > >>> > > > >>> > > > >>> > > > >>>I hope one of your doctors can provide an ER protocol for you. Most ER docs > > > >>> > > > >>>will do their best to help if they have written instructions from your > > > >>> > > > >>>doctor. It also eased my anxiety about getting help when I need it. > > > >>> > > > >>> > > > >>> > > > >>>Hope you are better soon. > > > >>> > > > >>>Barbara > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>>> ER Visit > > > >>>> > > > >>>> > > > >>>>i am calling my neuro in Madison, WI and see if she can't send a fax to > > > >>>> > > > >>>> > > > >>>the ER- > > > >>> > > > >>> > > > >>> > > > >>>>because i know I will most likely end up there again today. Plus calling > > > >>>> > > > >>>> > > > >>>my pulmo's > > > >>> > > > >>> > > > >>> > > > >>>>office to get one of his collegues to call the ER too. > > > >>>> > > > >>>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>>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 September 11, 2005 Report Share Posted September 11, 2005 Yes, my understanding from the literature and from the doctors I have seen is that cofactors/supplements should be carefully selected according to which metabolic pathways are impaired. Individual trials and doses of cofactors/supplements should take into account the patient's size, condition, toleration etc. We have always treated them with the same respect as any rx drug. >From UMDF: " Treatment must be tailored by the patient's physician to meet that patient's need. Many of these therapies are totally ineffective in some mitochondrial disorders and would be a waste of time, money and effort. In some cases, the treatment could be dangerous. " B > Re: ER Visit > > What do you mean by " I was on the mito cocktail " ? There are many > things (supplements, vitamins, and medications) on the list (15+?), > and my understanding is that one tries one at a time (while under a > doctor's care), and sees which ones help or don't help. For example, > for me, I tried CoQ10 and Carnitor first, they both were problems for > me. I tried multi B vitamins, they seemed to work at first but then > I had issues. I tried NADH and that helped me out. I feel good > about my level of symptom control, so I am now only on NADH. > > I think there are people on a few of the list, but very few if any > on " all " of them. Do others have thoughts on this, or am I > misinterpreting how the mito cocktail should be used (this is per my > info from Atlanta). > > Take care, > RH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 , If I remember right you were EXTREMELY ANEMIC? I'M sure that the sarc is doing something with your heart and I'm glad you are getting the holter and cath done. This is very good! Next time, don't drive yourself-- let the kid help you when he says he wants to. --It's him taking charge of something that needs someone to take charge. That aside-- I go for the anemia -- if you remember, when you don't have enough red blood cells in your bloodstream, there isn't anything to take the oxygen out thru your body. So you end up getting short of breath faster. I hope this is it-- it's easier to correct-- and figure out. Take care, and hide if ya need too! Hugs, TracieSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 , If I remember right you were EXTREMELY ANEMIC? I'M sure that the sarc is doing something with your heart and I'm glad you are getting the holter and cath done. This is very good! Next time, don't drive yourself-- let the kid help you when he says he wants to. --It's him taking charge of something that needs someone to take charge. That aside-- I go for the anemia -- if you remember, when you don't have enough red blood cells in your bloodstream, there isn't anything to take the oxygen out thru your body. So you end up getting short of breath faster. I hope this is it-- it's easier to correct-- and figure out. Take care, and hide if ya need too! Hugs, TracieSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 ,The most helpful test for me was the PDS 30 day event monitor. Every time I had a heart symptom I pressed the button and it recorded 90 seconds back and 30 seconds forward. It caught V-tach (self-terminated without my AICD shocking me) and several other abnormal rhythms. I've also had an echo of my heart as well as a thallium treadmill stress test. The significant results of the stress test was that my heart showed a "patchy" uptake during rest as well as exercise which was highly suggestive of cardiac sarcoidosis (along with many other symptoms). The patchiness was inflammation. I had to go through a couple of cardiologists before getting the diagnosis. It was my s Hopkins doctor who put it all together. Now, I'm on weekly subq methotrexate injections, increased prednisone, minocycline (decreases inflammation), and my usual other meds. The 3 weeks in Sept and Oct were the scariest of my life. Almost everytime I would feel skips, my chest would hurt and I would feel weak. Now, doing better but it is in the back of my mind. You are in my thoughts and prayers.Blessings and Love, Beckytopdat@... wrote: Hey gang, I'm slowly climbing out of hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still having the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick.. I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously.. Thanks all, Get easy, one-click access to your favorites. Make Yahoo! your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 ,een I am truly saddened and sorrowful to hear of your situation. I noticed you have not been posting much and so I wondered what was wrong. I will keep you in my good thoughts with positive energy for improved health to come your way. Your brother in Sarcoidism, Ron > Hey gang, I'm slowly climbing ouet Tof hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still having the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. > > They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick..> > I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously..> > Thanks all,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 ,een I am truly saddened and sorrowful to hear of your situation. I noticed you have not been posting much and so I wondered what was wrong. I will keep you in my good thoughts with positive energy for improved health to come your way. Your brother in Sarcoidism, Ron > Hey gang, I'm slowly climbing ouet Tof hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still having the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. > > They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick..> > I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously..> > Thanks all,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 Thanks Ron, I appreciate your good thoughts and prayers as I'm pretty frightened about this one.. Hugs, -een Re: ER Visit ,een I am truly saddened and sorrowful to hear of your situation. I noticed you have not been posting much and so I wondered what was wrong. I will keep you in my good thoughts with positive energy for improved health to come your way. Your brother in Sarcoidism, Ron > Hey gang, I'm slowly climbing ouet Tof hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still havig the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. > > They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick..> > I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously..> > Thanks all,> > No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 Thanks Ron, I appreciate your good thoughts and prayers as I'm pretty frightened about this one.. Hugs, -een Re: ER Visit ,een I am truly saddened and sorrowful to hear of your situation. I noticed you have not been posting much and so I wondered what was wrong. I will keep you in my good thoughts with positive energy for improved health to come your way. Your brother in Sarcoidism, Ron > Hey gang, I'm slowly climbing ouet Tof hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still havig the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. > > They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick..> > I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously..> > Thanks all,> > No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 Thanks Becky, I knew you'd know.. and give me some suggestions.. I had a stress echo about 3 months ago, but I didn't have this type of symptoms at that time, just some tightening in my chest.. Now, its full blown pain in my right neck jaw and shoulder, with extreme shortness of breath and nausea.. I did see the cardio doctor today, she is gonna do a heart monitor 48hour but I'm to have a cardiac cath this monday.. I had some slight pulmonary hypertension several years ago.. no symptoms has been like this.. They did have me walk up the hall about 20 ft and back sure enough I had the puslation and pain in my neck.. She didn't want to put the cath off till after Thanksgiving.. Re: ER Visit ,The most helpful test for me was the PDS 30 day event monitor. Every time I had a heart symptom I pressed the button and it recorded 90 seconds back and 30 seconds forward. It caught V-tach (self-terminated without my AICD shocking me) and several other abnormal rhythms. I've also had an echo of my heart as well as a thallium treadmill stress test. The significant results of the stress test was that my heart showed a "patchy" uptake during rest as well as exercise which was highly suggestive of cardiac sarcoidosis (along with many other symptoms). The patchiness was inflammation. I had to go through a couple of cardiologists before getting the diagnosis. It was my s Hopkins doctor who put it all together. Now, I'm on weekly subq methotrexate injections, increased prednisone, minocycline (decreases inflammation), and my usual other meds. The 3 weeks in Sept and Oct were the scariest of my life. Almost everytime I would feel skips, my chest would hurt and I would feel weak. Now, doing better but it is in the back of my mind. You are in my thoughts and prayers.Blessings and Love, Beckytopdat (AT) bellsouth (DOT) net wrote: Hey gang, I'm slowly climbing out of hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still having the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick.. I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously.. Thanks all, Get easy, one-click access to your favorites. Make Yahoo! your homepage. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 Thanks Becky, I knew you'd know.. and give me some suggestions.. I had a stress echo about 3 months ago, but I didn't have this type of symptoms at that time, just some tightening in my chest.. Now, its full blown pain in my right neck jaw and shoulder, with extreme shortness of breath and nausea.. I did see the cardio doctor today, she is gonna do a heart monitor 48hour but I'm to have a cardiac cath this monday.. I had some slight pulmonary hypertension several years ago.. no symptoms has been like this.. They did have me walk up the hall about 20 ft and back sure enough I had the puslation and pain in my neck.. She didn't want to put the cath off till after Thanksgiving.. Re: ER Visit ,The most helpful test for me was the PDS 30 day event monitor. Every time I had a heart symptom I pressed the button and it recorded 90 seconds back and 30 seconds forward. It caught V-tach (self-terminated without my AICD shocking me) and several other abnormal rhythms. I've also had an echo of my heart as well as a thallium treadmill stress test. The significant results of the stress test was that my heart showed a "patchy" uptake during rest as well as exercise which was highly suggestive of cardiac sarcoidosis (along with many other symptoms). The patchiness was inflammation. I had to go through a couple of cardiologists before getting the diagnosis. It was my s Hopkins doctor who put it all together. Now, I'm on weekly subq methotrexate injections, increased prednisone, minocycline (decreases inflammation), and my usual other meds. The 3 weeks in Sept and Oct were the scariest of my life. Almost everytime I would feel skips, my chest would hurt and I would feel weak. Now, doing better but it is in the back of my mind. You are in my thoughts and prayers.Blessings and Love, Beckytopdat (AT) bellsouth (DOT) net wrote: Hey gang, I'm slowly climbing out of hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still having the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick.. I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously.. Thanks all, Get easy, one-click access to your favorites. Make Yahoo! your homepage. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 Yeah, Tracie I was extremely anemic.. in a bad way.. but since they did the bone marrow and found that my problem was iron deficiency.. and I'm taking the iron.. my hct and hgb has normalized.. or so that said when they drew blood.. while I was anemic though I had a heart murmur.. it also went away when the hct and the hgb came up.. I didn't think of it like that when Damian offered to take me.. and your right I should have let him.. I am gonna let him take me monday, just he and me.. my mother, which is useless anyway, is staying home.. of course if needed they can always come later, but my dad has so called parkinson's.. he has a new "parkinson's" lesion on his leg.. dumb butts.. Thanks, Re: ER Visit , If I remember right you were EXTREMELY ANEMIC? I'M sure that the sarc is doing something with your heart and I'm glad you are getting the holter and cath done. This is very good! Next time, don't drive yourself-- let the kid help you when he says he wants to. --It's him taking charge of something that needs someone to take charge. That aside-- I go for the anemia -- if you remember, when you don't have enough red blood cells in your bloodstream, there isn't anything to take the oxygen out thru your body. So you end up getting short of breath faster. I hope this is it-- it's easier to correct-- and figure out. Take care, and hide if ya need too! Hugs, Tracie See what's new at AOL.com and Make AOL Your Homepage. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 Yeah, Tracie I was extremely anemic.. in a bad way.. but since they did the bone marrow and found that my problem was iron deficiency.. and I'm taking the iron.. my hct and hgb has normalized.. or so that said when they drew blood.. while I was anemic though I had a heart murmur.. it also went away when the hct and the hgb came up.. I didn't think of it like that when Damian offered to take me.. and your right I should have let him.. I am gonna let him take me monday, just he and me.. my mother, which is useless anyway, is staying home.. of course if needed they can always come later, but my dad has so called parkinson's.. he has a new "parkinson's" lesion on his leg.. dumb butts.. Thanks, Re: ER Visit , If I remember right you were EXTREMELY ANEMIC? I'M sure that the sarc is doing something with your heart and I'm glad you are getting the holter and cath done. This is very good! Next time, don't drive yourself-- let the kid help you when he says he wants to. --It's him taking charge of something that needs someone to take charge. That aside-- I go for the anemia -- if you remember, when you don't have enough red blood cells in your bloodstream, there isn't anything to take the oxygen out thru your body. So you end up getting short of breath faster. I hope this is it-- it's easier to correct-- and figure out. Take care, and hide if ya need too! Hugs, Tracie See what's new at AOL.com and Make AOL Your Homepage. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 ,I'm glad you're having the cath done. I too have PH and was suppose to have a MUGA scan yesterday but they were unable to do it. So, the Remicade is on hold until my ejection fraction can be determined, My cardio won't clear me for the Remicade until he knows my heart can take it. I saw on another post where Tracie mentioned you having a hx of severe anemia...that can certainly cause heart symptoms. Please know you're in my prayers. Blessings and Love,Beckytopdat@... wrote: Thanks Becky, I knew you'd know.. and give me some suggestions.. I had a stress echo about 3 months ago, but I didn't have this type of symptoms at that time, just some tightening in my chest.. Now, its full blown pain in my right neck jaw and shoulder, with extreme shortness of breath and nausea.. I did see the cardio doctor today, she is gonna do a heart monitor 48hour but I'm to have a cardiac cath this monday.. I had some slight pulmonary hypertension several years ago.. no symptoms has been like this.. They did have me walk up the hall about 20 ft and back sure enough I had the puslation and pain in my neck.. She didn't want to put the cath off till after Thanksgiving.. Re: ER Visit ,The most helpful test for me was the PDS 30 day event monitor. Every time I had a heart symptom I pressed the button and it recorded 90 seconds back and 30 seconds forward. It caught V-tach (self-terminated without my AICD shocking me) and several other abnormal rhythms. I've also had an echo of my heart as well as a thallium treadmill stress test. The significant results of the stress test was that my heart showed a "patchy" uptake during rest as well as exercise which was highly suggestive of cardiac sarcoidosis (along with many other symptoms). The patchiness was inflammation. I had to go through a couple of cardiologists before getting the diagnosis. It was my s Hopkins doctor who put it all together. Now, I'm on weekly subq methotrexate injections, increased prednisone, minocycline (decreases inflammation), and my usual other meds. The 3 weeks in Sept and Oct were the scariest of my life. Almost everytime I would feel skips, my chest would hurt and I would feel weak. Now, doing better but it is in the back of my mind. You are in my thoughts and prayers.Blessings and Love, Beckytopdat (AT) bellsouth (DOT) net wrote: Hey gang, I'm slowly climbing out of hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still having the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick.. I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously.. Thanks all, Get easy, one-click access to your favorites. Make Yahoo! your homepage. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 ,I'm glad you're having the cath done. I too have PH and was suppose to have a MUGA scan yesterday but they were unable to do it. So, the Remicade is on hold until my ejection fraction can be determined, My cardio won't clear me for the Remicade until he knows my heart can take it. I saw on another post where Tracie mentioned you having a hx of severe anemia...that can certainly cause heart symptoms. Please know you're in my prayers. Blessings and Love,Beckytopdat@... wrote: Thanks Becky, I knew you'd know.. and give me some suggestions.. I had a stress echo about 3 months ago, but I didn't have this type of symptoms at that time, just some tightening in my chest.. Now, its full blown pain in my right neck jaw and shoulder, with extreme shortness of breath and nausea.. I did see the cardio doctor today, she is gonna do a heart monitor 48hour but I'm to have a cardiac cath this monday.. I had some slight pulmonary hypertension several years ago.. no symptoms has been like this.. They did have me walk up the hall about 20 ft and back sure enough I had the puslation and pain in my neck.. She didn't want to put the cath off till after Thanksgiving.. Re: ER Visit ,The most helpful test for me was the PDS 30 day event monitor. Every time I had a heart symptom I pressed the button and it recorded 90 seconds back and 30 seconds forward. It caught V-tach (self-terminated without my AICD shocking me) and several other abnormal rhythms. I've also had an echo of my heart as well as a thallium treadmill stress test. The significant results of the stress test was that my heart showed a "patchy" uptake during rest as well as exercise which was highly suggestive of cardiac sarcoidosis (along with many other symptoms). The patchiness was inflammation. I had to go through a couple of cardiologists before getting the diagnosis. It was my s Hopkins doctor who put it all together. Now, I'm on weekly subq methotrexate injections, increased prednisone, minocycline (decreases inflammation), and my usual other meds. The 3 weeks in Sept and Oct were the scariest of my life. Almost everytime I would feel skips, my chest would hurt and I would feel weak. Now, doing better but it is in the back of my mind. You are in my thoughts and prayers.Blessings and Love, Beckytopdat (AT) bellsouth (DOT) net wrote: Hey gang, I'm slowly climbing out of hiding and if you notice I said slowly.. I've started having this extreme shortness of breath that some of you are having, I can't walk from one room to another without gasping for breath, plus I've started having this pounding heart beat in my throat and neck along with the shortness of breath..I know we tend to blame everything on sarcoidosis, the doctors don't see it that way.. so I find myself lost again.hmmm.. On Monday night I had the most horrific throbbing pain in my right neck, radiating in to my shoulder and reaching up to my lower jaw.. I was nauseated and came close to upchucking several times but did not.. The only symptom I didn't have for a heart attack was I wasn't clammy or sweating profusely.. Soo, I opted to just wait it out.. When my son got up for school, I told him I was sick and was gonna go to the ER, he offered to take me,but its onlly like 2 blocks away, and I drove myself.. Still having the pain in my neck.. they did a doppler, a ct scan of my head and ekg and lab work.. everything was normal except my kidney function tests, seems my kidneys are trying to shut down again.. They did nothing.. my throbbing finally went away while resting there.. and so did my shortness of breath as long as I was lying still... I'm soooo sick of being sick.. I'm off to see a Cardiologist as we speak, what do I need to ask her to do? Holtier Monitor? They really don't take any of this very seriously.. Thanks all, Get easy, one-click access to your favorites. Make Yahoo! your homepage. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.33/1133 - Release Date: 11/15/2007 8:57 PM Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 he has a new "parkinson's" lesion on his leg.. dumb butts.. LOL! Parkinson's, psorasis-- hey it's a "p" word. Reminds me of my mom and the story of my aunt getting her rotary-cup repaired. I'm glad you're letting Damian go with you Monday. He needs to be empowered and knowledge is what does that. I do hope you've gone to FSR and ordered the free brochures-- both sarc and the body, and sarc and the heart. You get the first copy free- addl cost very little. Deep breathing my friend, TracieSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
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