Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 I have personally heard from 2 people who think their diagnosis of als was due to statins--and if one accesses the web site for muscular dystrophy, there is a feature of " ask the experts " for several different neuromuscluar diseases. Under the heading of " als " , there were 18 questions printed between feb 2004 and sept 2004--of those 18 questions, 4 of them specifically asked if one of the statins could have been implicated in their development of als. all the answers wwere reassuring to the patients taht it could not have been the statin, thou one doc did comment that it could be something to think about. on another web site for patients with als, " braintalk communities " , several of the members noted they feel statins were directly implicated in their development of the disease. i have now heard from 11 others who feel their parkinson's is due to statins. alzheimer's is also thought to be due to the same pathophysiology as parkinson's and als--just wonder how much the increase in these 3 diseases are due to statin use and not just " normal aging " ... my husband's symptoms have not progressed since he stopped the lipitor--he takes mega doses of coq10--1500 mgm/day as well as many of the vitamins and supplements dr.cohen suggests for mitochondrial cytopathy in adults. he also exercises a lot and performs tai chi for balance..we are hopeful. there is a posting of a letter published in a german medical journal citing a case of " statin induced parkinson's " in which the patient recovered completely. a translation of the letter was posted on another yahoo groupp " stoppedourstatins " under " olsen " you could do a serach for the letter there. if you wish, you could have your friend email me. thanks, maude > > > > > > > > > > > > > > So, last week I received a clinical dx of mito from both > > neuro > > > and > > > > > metabolics. So I guess I'm in the right place. Neuro said > > > that I > > > > > don't have MS and my brain MRI shows no evidence of stroke so > > > the > > > > > episodes could have been SLE's. Bloodwork and exam show > > muscle > > > > > disease. Carnitine deficiency plus other body systems and > > funky > > > labs > > > > > plus family hx give enough weight to a clinical dx. Labs for > > > DNA and > > > > > other funky things were drawn Monday so we'll see what comes > > > out of > > > > > it. I may go down to Atlanta for a muscle bx if we don't > > find > > > it in > > > > > blood. Not sure if it's dominant or maternally inherited > > > because ther > > > > > are shockingly few boys in the family. Several stillbirths > > and > > > > > miscarriages that were boys though. Go figure. > > > > > > > > > > The theory about the sudden terrible muscle problems is > > this: > > > I've > > > > > had > > > > > this underlying myopathy all my life, since you can't change > > > your > > > > > genes. I've compensated well most of the time but the drug > > > reaction > > > > > to > > > > > metformin (which happens in people with mito, go figure) > > > destroyed > > > > > healthy muscle and left me with more abnormal, affected > > muscle > > > trying > > > > > to do the job. So now I need to find out how to condition > > this > > > lousy > > > > > muscle and get on with life. I have PT and OT evals next > > > week. I'll > > > > > have a hearing test, a neuro-ophthalmology exam, and a sleep > > > study. > > > > > It > > > > > will make for some busy weeks but we'll get more info. I > > > really need > > > > > to figure out if this will be a short-term thing or if I > > should > > > try to > > > > > modify my work (although right now I can't write so I can't > > > work at > > > > > all). > > > > > > > > > > The diabetes is under control with insulin 4 times a day and > > > blood > > > > > sugar checks 4-7 times a day. Still waiting for the blood > > work > > > to see > > > > > if it's type 1 or2. > > > > > > > > > > Heidi > > > > > > > > > > So now I have an appt with Dr. Sims at MGH. I've heard > > > conflicting > > > > > reviews but hopefully it won't be a waste of time. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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 April 12, 2005 Report Share Posted April 12, 2005 ALS was one of my " rule-out " diagnoses when I first had mito symptoms, that and a brain tumor. Take care, RH > > > > > > > > > > > > > > So, last week I received a clinical dx of mito from both > > neuro > > > and > > > > > metabolics. So I guess I'm in the right place. Neuro said > > > that I > > > > > don't have MS and my brain MRI shows no evidence of stroke so > > > the > > > > > episodes could have been SLE's. Bloodwork and exam show > > muscle > > > > > disease. Carnitine deficiency plus other body systems and > > funky > > > labs > > > > > plus family hx give enough weight to a clinical dx. Labs for > > > DNA and > > > > > other funky things were drawn Monday so we'll see what comes > > > out of > > > > > it. I may go down to Atlanta for a muscle bx if we don't > > find > > > it in > > > > > blood. Not sure if it's dominant or maternally inherited > > > because ther > > > > > are shockingly few boys in the family. Several stillbirths > > and > > > > > miscarriages that were boys though. Go figure. > > > > > > > > > > The theory about the sudden terrible muscle problems is > > this: > > > I've > > > > > had > > > > > this underlying myopathy all my life, since you can't change > > > your > > > > > genes. I've compensated well most of the time but the drug > > > reaction > > > > > to > > > > > metformin (which happens in people with mito, go figure) > > > destroyed > > > > > healthy muscle and left me with more abnormal, affected > > muscle > > > trying > > > > > to do the job. So now I need to find out how to condition > > this > > > lousy > > > > > muscle and get on with life. I have PT and OT evals next > > > week. I'll > > > > > have a hearing test, a neuro-ophthalmology exam, and a sleep > > > study. > > > > > It > > > > > will make for some busy weeks but we'll get more info. I > > > really need > > > > > to figure out if this will be a short-term thing or if I > > should > > > try to > > > > > modify my work (although right now I can't write so I can't > > > work at > > > > > all). > > > > > > > > > > The diabetes is under control with insulin 4 times a day and > > > blood > > > > > sugar checks 4-7 times a day. Still waiting for the blood > > work > > > to see > > > > > if it's type 1 or2. > > > > > > > > > > Heidi > > > > > > > > > > So now I have an appt with Dr. Sims at MGH. I've heard > > > conflicting > > > > > reviews but hopefully it won't be a waste of time. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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 April 13, 2005 Report Share Posted April 13, 2005 Hi Donna, I was taking Simvastatin at the time and had been for ages when i had the biopsy...Simvastatin is what they give here in the UK the cheapest statin... After stopping it I noticed roughly 3 weeks later I was not as floppy/wobbly and stopped getting dark brown uggh urine which happened frequently etc...things gradualy improved a lot for me... I have now been put on Avorstatin your US name Lipitor and am beginning to feel horrible again,I dare not stop it as I was told to take it by of all people my mito. doc due to serious cholestral trouble.. I have done what patients shouldn't do and googled Lipitor and don't like what I read about it..I never had stomach cramps till about 3 weeks after taking it... I undersatnd from reading as a LAYPERSON that they think that ALS/Parkinsons/Alzeimrs and many other neuro illness MAY have a mitochondrial malfunction component... Gillian > > > > > > > > > > > > > > So, last week I received a clinical dx of mito from both > > neuro > > > and > > > > > metabolics. So I guess I'm in the right place. Neuro said > > > that I > > > > > don't have MS and my brain MRI shows no evidence of stroke so > > > the > > > > > episodes could have been SLE's. Bloodwork and exam show > > muscle > > > > > disease. Carnitine deficiency plus other body systems and > > funky > > > labs > > > > > plus family hx give enough weight to a clinical dx. Labs for > > > DNA and > > > > > other funky things were drawn Monday so we'll see what comes > > > out of > > > > > it. I may go down to Atlanta for a muscle bx if we don't > > find > > > it in > > > > > blood. Not sure if it's dominant or maternally inherited > > > because ther > > > > > are shockingly few boys in the family. Several stillbirths > > and > > > > > miscarriages that were boys though. Go figure. > > > > > > > > > > The theory about the sudden terrible muscle problems is > > this: > > > I've > > > > > had > > > > > this underlying myopathy all my life, since you can't change > > > your > > > > > genes. I've compensated well most of the time but the drug > > > reaction > > > > > to > > > > > metformin (which happens in people with mito, go figure) > > > destroyed > > > > > healthy muscle and left me with more abnormal, affected > > muscle > > > trying > > > > > to do the job. So now I need to find out how to condition > > this > > > lousy > > > > > muscle and get on with life. I have PT and OT evals next > > > week. I'll > > > > > have a hearing test, a neuro-ophthalmology exam, and a sleep > > > study. > > > > > It > > > > > will make for some busy weeks but we'll get more info. I > > > really need > > > > > to figure out if this will be a short-term thing or if I > > should > > > try to > > > > > modify my work (although right now I can't write so I can't > > > work at > > > > > all). > > > > > > > > > > The diabetes is under control with insulin 4 times a day and > > > blood > > > > > sugar checks 4-7 times a day. Still waiting for the blood > > work > > > to see > > > > > if it's type 1 or2. > > > > > > > > > > Heidi > > > > > > > > > > So now I have an appt with Dr. Sims at MGH. I've heard > > > conflicting > > > > > reviews but hopefully it won't be a waste of time. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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 April 13, 2005 Report Share Posted April 13, 2005 Gillian I take essential oils (fish oil, borage seed oil and flaxseed oil). My cholesterol dropped more on it than it ever did with the statins. laurie > > > Hi Donna, > I was taking Simvastatin at the time and had been for ages when i > had the biopsy...Simvastatin is what they give here in the UK grin> the cheapest statin... > After stopping it I noticed roughly 3 weeks later I was not as > floppy/wobbly and stopped getting dark brown uggh urine which > happened frequently etc...things gradualy improved a lot for me... > I have now been put on Avorstatin your US name Lipitor and am > beginning to feel horrible again,I dare not stop it as I was told to > take it by of all people my mito. doc due to serious cholestral > trouble.. > I have done what patients shouldn't do and googled Lipitor and don't > like what I read about it..I never had stomach cramps till about 3 > weeks after taking it... > > I undersatnd from reading as a LAYPERSON that they think that > ALS/Parkinsons/Alzeimrs and many other neuro illness MAY have a > mitochondrial malfunction component... > Gillian > > > > > > > > > > > > > > > > > > > So, last week I received a clinical dx of mito from both > > > neuro > > > > and > > > > > > metabolics. So I guess I'm in the right place. Neuro > said > > > > that I > > > > > > don't have MS and my brain MRI shows no evidence of > stroke so > > > > the > > > > > > episodes could have been SLE's. Bloodwork and exam show > > > muscle > > > > > > disease. Carnitine deficiency plus other body systems and > > > funky > > > > labs > > > > > > plus family hx give enough weight to a clinical dx. Labs > for > > > > DNA and > > > > > > other funky things were drawn Monday so we'll see what > comes > > > > out of > > > > > > it. I may go down to Atlanta for a muscle bx if we > don't > > > find > > > > it in > > > > > > blood. Not sure if it's dominant or maternally > inherited > > > > because ther > > > > > > are shockingly few boys in the family. Several > stillbirths > > > and > > > > > > miscarriages that were boys though. Go figure. > > > > > > > > > > > > The theory about the sudden terrible muscle problems is > > > this: > > > > I've > > > > > > had > > > > > > this underlying myopathy all my life, since you can't > change > > > > your > > > > > > genes. I've compensated well most of the time but the > drug > > > > reaction > > > > > > to > > > > > > metformin (which happens in people with mito, go figure) > > > > destroyed > > > > > > healthy muscle and left me with more abnormal, affected > > > muscle > > > > trying > > > > > > to do the job. So now I need to find out how to > condition > > > this > > > > lousy > > > > > > muscle and get on with life. I have PT and OT evals > next > > > > week. I'll > > > > > > have a hearing test, a neuro-ophthalmology exam, and a > sleep > > > > study. > > > > > > It > > > > > > will make for some busy weeks but we'll get more info. > I > > > > really need > > > > > > to figure out if this will be a short-term thing or if I > > > should > > > > try to > > > > > > modify my work (although right now I can't write so I > can't > > > > work at > > > > > > all). > > > > > > > > > > > > The diabetes is under control with insulin 4 times a day > and > > > > blood > > > > > > sugar checks 4-7 times a day. Still waiting for the > blood > > > work > > > > to see > > > > > > if it's type 1 or2. > > > > > > > > > > > > Heidi > > > > > > > > > > > > So now I have an appt with Dr. Sims at MGH. I've heard > > > > conflicting > > > > > > reviews but hopefully it won't be a waste of time. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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 April 13, 2005 Report Share Posted April 13, 2005 Hi Laurie, I'm curious...how much of the oils do you take each day? Do you think they help with the mito as well? Thanks. Lea > > I take essential oils (fish oil, borage seed oil and flaxseed oil). My > cholesterol dropped more on it than it ever did with the statins. > > laurie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 Lea I take two of the caplules each day. They contain 400 mg. of each oil. I havne't noticed any change with the mito, but I usually can't unless I discontinue something. laurie > > > Hi Laurie, > I'm curious...how much of the oils do you take each day? Do you think they > > help with the mito as well? > Thanks. > Lea > > > > > I take essential oils (fish oil, borage seed oil and flaxseed oil). My > > cholesterol dropped more on it than it ever did with the statins. > > > > laurie > > > > > > > > > > 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 April 13, 2005 Report Share Posted April 13, 2005 I have started the fish oils recently myself. Have not had my cholesterol checked yet, but will do so in a month or so. I am pleased so far not to have any adverse affects (some people have a fishy after taste and slight digerstive upsets I am told), and I am wondering if my memory is getting a little better again. Can't say for sure, by any means, but I am thinking maybe.... From what I have read about Omega 3 fats, I think it is something that I want to explore completely. I had already been taking flax seed oil. Regards Sunny > Lea > > I take two of the caplules each day. They contain 400 mg. of each oil. > > I havne't noticed any change with the mito, but I usually can't unless > I discontinue something. > > laurie > > > > > > > > > Hi Laurie, > > I'm curious...how much of the oils do you take each day? Do you > think they > > > > help with the mito as well? > > Thanks. > > Lea > > > > > > > > I take essential oils (fish oil, borage seed oil and flaxseed > oil). My > > > cholesterol dropped more on it than it ever did with the statins. > > > > > > laurie > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein > > are not necessarily those of the list moderators. The author of > this e mail > > is entirely responsible for its content. List members are reminded > of their > > responsibility to evaluate the content of the postings and consult > with > > their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends > one is > > automatically moderated or removed depending on the severity of the > attack. > > > > Quote Link to comment Share on other sites More sharing options...
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