Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Hi; I'm not quite sure of this format as I haven't used it yet, but here goes. I was very interested in RH's comments about pulse rate and seizures. I am undiagnosed and will probably stay that way for awhile anyway according to Dr. Sirrs at the Mito Clinic in Vancouver. My testing is coming back basically fine, except for a few things. My main problems have been neurological, intense muscle pain etc... In January I was hospitalized with grand mal seizures, totally out of the blue never had one before. They said they weren't seizures (a neuro who did the EEG told me everything was caused by stress only) because they didn't show on the EEG but yet during them my respiration slows, my pulse went down to the low 50's and I was almost catatonic to the point they were considering tubing me to breathe. Dr. Sirrs didn't agree with the neuro and said basically seizures are caused for many different reasons, unfortunately in my case there is nothing positively pointing in one direction. More tests are being ordered, they know there is definitely something neurological going on affecting my muscles, swollowing, hearing in my left ear, lack of sensation in my lower limbs, extreme fatigue but she was honest enough to also tell me that I may never get a diagnosis for this problem. It was a lot to deal with and I'm still processing it. I still have seizures, small ones only though. I'm on clonezepam and neurontin and I also have adivan to take after I have one if I need to. They are scarey, especially when you don't know why. I better finish here, there is so much more going on, I could write a book!! as could we all probably. Take care everyone, Penny wrote: > > 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. > ------------------------------------------------------------------------ > > There are 25 messages in this issue. > > Topics in this digest: > > 1. Re: Cholesterol Meds? > From: BDS31@... > 2. Re: Myoclonus > From: Gme240@... > 3. Re: Cholesterol Meds? > > 4. Re: Cholesterol Meds? > > 5. Re: UMDF cookbook - where to get one? > From: Gme240@... > 6. Re: Is anyone dealing with sililar issues? Help! > From: Gme240@... > 7. Re: Cholesterol Meds? > From: Gme240@... > 8. Thanks and update re: muscle biopsy procedure question and ketogenic diet > > 9. Jan's Plea > > 10. Dates for the Conference > From: mitooggo@... > 11. Re: Alice and Laurie: Thanks for the reminder! > > 12. Re: Re: Alice and Laurie: Thanks for the reminder! > > 13. Re: Cholesterol Meds? > > 14. red ears > > 15. Re: Re: Alice and Laurie: Thanks for the reminder! > > 16. seizures and slow heart rate > > 17. Re: leslie > > 18. Re: Vioxx > > 19. Re: red ears > From: Mrsmurffy@... > 20. Re: Thanks for the reminder! > From: aadams0000@... > 21. Re: Thanks and update re: muscle biopsy procedure question and keto... > From: aadams0000@... > 22. Re: red ears > > 23. Re: Streptococcus Infection & MELAS > > 24. Testing > > 25. Re:myoclonus > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Mon, 25 Mar 2002 14:22:48 -0500 (EST) > From: BDS31@... > Subject: Re: Cholesterol Meds? > > Dear , > I can't tolerate any of the statins I've been on. They geatly increase > my muscle weakness. The first bad reaction I had was at least 4 years > ago, before they knew anything about statins and myopathy. > My doctor wants me to try again, but I have respectfully refused to do > so. > Good luck! > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 2 > Date: Mon, 25 Mar 2002 19:10:38 EST > From: Gme240@... > Subject: Re: Myoclonus > > Hi, > > I take 3.5 mg of Klonopin (Clonazepam) -- it work wonder. I have sleep > induce myoclosnus that severe but the medicine have help trememdous. > > Eileen > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 3 > Date: Mon, 25 Mar 2002 20:52:21 -0500 > > Subject: Re: Cholesterol Meds? > > Have you tried to lower it by taking Omega-3 oils like EPA supplements? > That has kept mine low. > > LilSis > > BDS31@... wrote: > > > > Dear , > > I can't tolerate any of the statins I've been on. They geatly increase > > my muscle weakness. The first bad reaction I had was at least 4 years > > ago, before they knew anything about statins and myopathy. > > My doctor wants me to try again, but I have respectfully refused to do > > so. > > Good luck! > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 4 > Date: Mon, 25 Mar 2002 20:53:14 -0500 > > Subject: Re: Cholesterol Meds? > > I would look for a non-statin . > > LilSis > > wrote: > > > > Hi, all.. This is , mom to Seth and Ben who have been diagnosed with > > mito. I have not been diagnosed but have soft signs. I occassionally go > > through periods of time where my muscles hurt and are weak. Two weeks ago I > > started Lipitor to reduce my cholesterol. I remember a thread a while back > > re: which drug was not safe to use for Mito. I am really achey and > > wondering if this Lipitor is a bad thing for me. Was it Lipitor that was > > harmful? The side effects warnings say to notify dr. if muscle weakness > > occurs, but I don't know if it is my " normal " or due to the drug. I was > > already going through a weird time with fatigue and autonomic issues. > > Thanks, > > > > > > 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 March 26, 2002 Report Share Posted March 26, 2002 Penny I'm glad you posted. I know how frustrating it is to " not know " . Try to take each day at a time. Celebrate the good days and curse the bad ones. I hope you get the answers you are looking for. laurie > > Reply-To: > Date: Tue, 26 Mar 2002 10:40:02 -0800 > To: > Subject: Re: Digest Number 2102 > > Hi; I'm not quite sure of this format as I haven't used it yet, but here > goes. I was very interested in RH's comments about pulse rate and seizures. > I am undiagnosed and will probably stay that way for awhile anyway according > to Dr. Sirrs at the Mito Clinic in Vancouver. My testing is coming back > basically fine, except for a few things. My main problems > have been neurological, intense muscle pain etc... In January I was > hospitalized with grand mal seizures, totally out of the blue never had one > before. They said they weren't seizures (a neuro who did the EEG told me > everything was caused by stress only) because they didn't show on the EEG but > yet during them my respiration slows, my pulse went down to the low > 50's and I was almost catatonic to the point they were considering tubing me > to breathe. Dr. Sirrs didn't agree with the neuro and said basically seizures > are caused for many different reasons, unfortunately in my case there is > nothing positively pointing in one direction. More tests are being ordered, > they know there is definitely something neurological going > on affecting my muscles, swollowing, hearing in my left ear, lack of sensation > in my lower limbs, extreme fatigue but she was honest enough to also tell me > that I may never get a diagnosis for this problem. It was a lot to deal with > and I'm still processing it. I still have seizures, small ones only though. > I'm on clonezepam and neurontin and I also have > adivan to take after I have one if I need to. They are scarey, especially > when you don't know why. I better finish here, there is so much more going > on, I could write a book!! as could we all probably. > Take care everyone, Penny > > wrote: > >> >> 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. >> ------------------------------------------------------------------------ >> >> There are 25 messages in this issue. >> >> Topics in this digest: >> >> 1. Re: Cholesterol Meds? >> From: BDS31@... >> 2. Re: Myoclonus >> From: Gme240@... >> 3. Re: Cholesterol Meds? >> >> 4. Re: Cholesterol Meds? >> >> 5. Re: UMDF cookbook - where to get one? >> From: Gme240@... >> 6. Re: Is anyone dealing with sililar issues? Help! >> From: Gme240@... >> 7. Re: Cholesterol Meds? >> From: Gme240@... >> 8. Thanks and update re: muscle biopsy procedure question and ketogenic diet >> >> 9. Jan's Plea >> >> 10. Dates for the Conference >> From: mitooggo@... >> 11. Re: Alice and Laurie: Thanks for the reminder! >> >> 12. Re: Re: Alice and Laurie: Thanks for the reminder! >> >> 13. Re: Cholesterol Meds? >> >> 14. red ears >> >> 15. Re: Re: Alice and Laurie: Thanks for the reminder! >> >> 16. seizures and slow heart rate >> >> 17. Re: leslie >> >> 18. Re: Vioxx >> >> 19. Re: red ears >> From: Mrsmurffy@... >> 20. Re: Thanks for the reminder! >> From: aadams0000@... >> 21. Re: Thanks and update re: muscle biopsy procedure question and keto... >> From: aadams0000@... >> 22. Re: red ears >> >> 23. Re: Streptococcus Infection & MELAS >> >> 24. Testing >> >> 25. Re:myoclonus >> >> >> ________________________________________________________________________ >> ________________________________________________________________________ >> >> Message: 1 >> Date: Mon, 25 Mar 2002 14:22:48 -0500 (EST) >> From: BDS31@... >> Subject: Re: Cholesterol Meds? >> >> Dear , >> I can't tolerate any of the statins I've been on. They geatly increase >> my muscle weakness. The first bad reaction I had was at least 4 years >> ago, before they knew anything about statins and myopathy. >> My doctor wants me to try again, but I have respectfully refused to do >> so. >> Good luck! >> >> >> ________________________________________________________________________ >> ________________________________________________________________________ >> >> Message: 2 >> Date: Mon, 25 Mar 2002 19:10:38 EST >> From: Gme240@... >> Subject: Re: Myoclonus >> >> Hi, >> >> I take 3.5 mg of Klonopin (Clonazepam) -- it work wonder. I have sleep >> induce myoclosnus that severe but the medicine have help trememdous. >> >> Eileen >> >> ________________________________________________________________________ >> ________________________________________________________________________ >> >> Message: 3 >> Date: Mon, 25 Mar 2002 20:52:21 -0500 >> >> Subject: Re: Cholesterol Meds? >> >> Have you tried to lower it by taking Omega-3 oils like EPA supplements? >> That has kept mine low. >> >> LilSis >> >> BDS31@... wrote: >>> >>> Dear , >>> I can't tolerate any of the statins I've been on. They geatly increase >>> my muscle weakness. The first bad reaction I had was at least 4 years >>> ago, before they knew anything about statins and myopathy. >>> My doctor wants me to try again, but I have respectfully refused to do >>> so. >>> Good luck! >>> >> >> ________________________________________________________________________ >> ________________________________________________________________________ >> >> Message: 4 >> Date: Mon, 25 Mar 2002 20:53:14 -0500 >> >> Subject: Re: Cholesterol Meds? >> >> I would look for a non-statin . >> >> LilSis >> >> wrote: >>> >>> Hi, all.. This is , mom to Seth and Ben who have been diagnosed with >>> mito. I have not been diagnosed but have soft signs. I occassionally go >>> through periods of time where my muscles hurt and are weak. Two weeks ago I >>> started Lipitor to reduce my cholesterol. I remember a thread a while back >>> re: which drug was not safe to use for Mito. I am really achey and >>> wondering if this Lipitor is a bad thing for me. Was it Lipitor that was >>> harmful? The side effects warnings say to notify dr. if muscle weakness >>> occurs, but I don't know if it is my " normal " or due to the drug. I was >>> already going through a weird time with fatigue and autonomic issues. >>> Thanks, >>> >>> >>> 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 March 31, 2002 Report Share Posted March 31, 2002 I had 10 years of " mostly normal " testing until I had my fresh bx in Dec 1999, so don't give up. It isn't an easy or quick journey, but one many of us have traveled before you. Thinking of you, LilSis Rick and Penny Whiteford wrote: > > Hi; I'm not quite sure of this format as I haven't used it yet, but here goes. I was very interested in RH's comments about pulse rate and seizures. I am undiagnosed and will probably stay that way for awhile anyway according to Dr. Sirrs at the Mito Clinic in Vancouver. My testing is coming back basically fine, except for a few things. My main problems > have been neurological, intense muscle pain etc... In January I was hospitalized with grand mal seizures, totally out of the blue never had one before. They said they weren't seizures (a neuro who did the EEG told me everything was caused by stress only) because they didn't show on the EEG but yet during them my respiration slows, my pulse went down to the low > 50's and I was almost catatonic to the point they were considering tubing me to breathe. Dr. Sirrs didn't agree with the neuro and said basically seizures are caused for many different reasons, unfortunately in my case there is nothing positively pointing in one direction. More tests are being ordered, they know there is definitely something neurological going > on affecting my muscles, swollowing, hearing in my left ear, lack of sensation in my lower limbs, extreme fatigue but she was honest enough to also tell me that I may never get a diagnosis for this problem. It was a lot to deal with and I'm still processing it. I still have seizures, small ones only though. I'm on clonezepam and neurontin and I also have > adivan to take after I have one if I need to. They are scarey, especially when you don't know why. I better finish here, there is so much more going on, I could write a book!! as could we all probably. > Take care everyone, Penny > > wrote: > > > > > 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. > > ------------------------------------------------------------------------ > > > > There are 25 messages in this issue. > > > > Topics in this digest: > > > > 1. Re: Cholesterol Meds? > > From: BDS31@... > > 2. Re: Myoclonus > > From: Gme240@... > > 3. Re: Cholesterol Meds? > > > > 4. Re: Cholesterol Meds? > > > > 5. Re: UMDF cookbook - where to get one? > > From: Gme240@... > > 6. Re: Is anyone dealing with sililar issues? Help! > > From: Gme240@... > > 7. Re: Cholesterol Meds? > > From: Gme240@... > > 8. Thanks and update re: muscle biopsy procedure question and ketogenic diet > > > > 9. Jan's Plea > > > > 10. Dates for the Conference > > From: mitooggo@... > > 11. Re: Alice and Laurie: Thanks for the reminder! > > > > 12. Re: Re: Alice and Laurie: Thanks for the reminder! > > > > 13. Re: Cholesterol Meds? > > > > 14. red ears > > > > 15. Re: Re: Alice and Laurie: Thanks for the reminder! > > > > 16. seizures and slow heart rate > > > > 17. Re: leslie > > > > 18. Re: Vioxx > > > > 19. Re: red ears > > From: Mrsmurffy@... > > 20. Re: Thanks for the reminder! > > From: aadams0000@... > > 21. Re: Thanks and update re: muscle biopsy procedure question and keto... > > From: aadams0000@... > > 22. Re: red ears > > > > 23. Re: Streptococcus Infection & MELAS > > > > 24. Testing > > > > 25. Re:myoclonus > > > > > > ________________________________________________________________________ > > ________________________________________________________________________ > > > > Message: 1 > > Date: Mon, 25 Mar 2002 14:22:48 -0500 (EST) > > From: BDS31@... > > Subject: Re: Cholesterol Meds? > > > > Dear , > > I can't tolerate any of the statins I've been on. They geatly increase > > my muscle weakness. The first bad reaction I had was at least 4 years > > ago, before they knew anything about statins and myopathy. > > My doctor wants me to try again, but I have respectfully refused to do > > so. > > Good luck! > > > > > > ________________________________________________________________________ > > ________________________________________________________________________ > > > > Message: 2 > > Date: Mon, 25 Mar 2002 19:10:38 EST > > From: Gme240@... > > Subject: Re: Myoclonus > > > > Hi, > > > > I take 3.5 mg of Klonopin (Clonazepam) -- it work wonder. I have sleep > > induce myoclosnus that severe but the medicine have help trememdous. > > > > Eileen > > > > ________________________________________________________________________ > > ________________________________________________________________________ > > > > Message: 3 > > Date: Mon, 25 Mar 2002 20:52:21 -0500 > > > > Subject: Re: Cholesterol Meds? > > > > Have you tried to lower it by taking Omega-3 oils like EPA supplements? > > That has kept mine low. > > > > LilSis > > > > BDS31@... wrote: > > > > > > Dear , > > > I can't tolerate any of the statins I've been on. They geatly increase > > > my muscle weakness. The first bad reaction I had was at least 4 years > > > ago, before they knew anything about statins and myopathy. > > > My doctor wants me to try again, but I have respectfully refused to do > > > so. > > > Good luck! > > > > > > > ________________________________________________________________________ > > ________________________________________________________________________ > > > > Message: 4 > > Date: Mon, 25 Mar 2002 20:53:14 -0500 > > > > Subject: Re: Cholesterol Meds? > > > > I would look for a non-statin . > > > > LilSis > > > > wrote: > > > > > > Hi, all.. This is , mom to Seth and Ben who have been diagnosed with > > > mito. I have not been diagnosed but have soft signs. I occassionally go > > > through periods of time where my muscles hurt and are weak. Two weeks ago I > > > started Lipitor to reduce my cholesterol. I remember a thread a while back > > > re: which drug was not safe to use for Mito. I am really achey and > > > wondering if this Lipitor is a bad thing for me. Was it Lipitor that was > > > harmful? The side effects warnings say to notify dr. if muscle weakness > > > occurs, but I don't know if it is my " normal " or due to the drug. I was > > > already going through a weird time with fatigue and autonomic issues. > > > Thanks, > > > > > > > > > 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...
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