Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Hi Adam, I wish I knew what to tell you about your relapse since I have had very similar symptoms (minus the heart stuff). At one point, it got so bad I was on morphine. But I don't like the mental side effects of narcotics and they are fatiguing--and with sensitive digestion, the constipation that all narcotics cause can be difficult. Nonetheless, when I'm at my worst, they help me move around more. I did find for myself that too much rest made things worse. Balancing rest and movement was essential for me. I gradually increased the amount of time out of bed--by a few minutes as many times a day as I could. The muscle pain got worse if I was lying down all the time and there was too much pressure on my body from that. But too much activity is obviously not good either. Anyway, that was my experience but I hesitate to mention it because it's hard to know how similar our situations really are. Anyway, my heart goes out to you. I know how hard it is. I also hesitate to ask you a question that requires you to use the keyboard. So I won't be insulted if you don't answer. Please take care of yourself first. But I was the one asking about Boston docs. I didn't understand what you meant about the difference between a metabolic approach and a neuro approach. I'm thinking neuro might be best for anyway since most of my symptoms are neuro and I was originally diagnosed with Reflex Sympathetic Dystrophy, an autonomic nervous system problem. Best to you, Shayna > > Hi, > > I haven't been following the list for awhile but have recently started > reading posts every once in awhile. I see there are questions about > Bos Docs..and now this morning weak feeling. I have Dr Korson as a > specialist in Boston and find him to be very involved when I am sick and > full of common sense suggestions about what to try to mediate symptoms. > He is very overstretched with way more patients than he can handle and > this doesn't allow him to give his best, but he tries hard. Lately I > have had the feeling that he maybe experiencing burnout. > > I had an appt w Dr Simms, but she has a different approach. Dr Korson > comes at it from a metabolic approach rather than a nuerological > approach. I just felt the metabolic approach fits my situation better. > > I am having a relapse that just started a week ago Sunday. I am getting > concerned that it is spinning down and I am having trouble figuring out > what to do for myself. I started having general fatigue, hand and arm > pain and burning from overusing the computer. Then got some bad news > last week that created a lot of stressful situations and my body over > reacted, chest pain and skipping beats. It has been recommended that I > take a stress test. > > I have been trying to rest more and lower the stress but every day > instead of feeling better, I am feeling worse. Yesterday, every muscle > in my body hurt. I couldn't get comfortable no matter what I did. I > had a hard time falling asleep from muscle pain. When I get up to walk > around I feel weaker and after I sit back down, my heart feels like it > is pounding. I seem to be getting nerve ending pain. My sleep is > interrupted, my digestive system is slowed down with other symptoms. I > thought resting would speed up recovery, but now I am wondering if it is > exacerbating it and I need to go back to being more active. > > I am taking QGel and carnitine..2 30mg caps in morning, than 1 30mg at > lunch and dinner. One carnitine 3x a day. At first I cut back on the > supplements because my stomach was rebeling against everything. But now > am going the opposite direction and trying to increase the supplements. > Someone suggested I take alphalipoic acid for the muscle pain, but my > stomach didn't appreciate the new supplement. > > Can anyone make any suggestions for what I might do to speed up the > recovery time? How do you handle a crash? Something to ease the muscle > pain? > > Thanks, > Adam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Adam, sorry to hear about your recent troubles. I too feel that my doc's generally look at me from a neuro perspective and not metabolically...especially when my lab values aren't significantly off the norm. I can also say that for me, nothing is harder on my body than emotional stress. My physical symptoms are much more prevalent and I'm also more suseptible to infection during this time. There is a viral infection going around that causes flu-like symptoms. Seems as though many people have it right now. Keep in mind, this is not flu season, but many viruses are thriving. Aside from that, you may be creating more of a metabolic imbalance by increasing your supplements. There aren't any hard-fast rules about dosages, so it might be that you need less of something and not necessarily more of something. Your body is obviously telling you that you need more rest than you are getting...either emotionally or physically...or both. There are no quick remedies for a crash. Rest is it. Listen to your body and don't put pressure on yourself to make a quick recovery...sometimes it takes a little while. Remember to avoid caffeine and refined sugars and drink plenty of water...maybe gator aid if you feel like your electrolites are off. Definately, keep your doc's apprised of any changes in your supplements and changes in symptoms. Best of luck. I hope you feel better soon. hugs, bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Adam I am sorry you are feeling poorly. Spring and fall are difficult for me as the drastic changes in temperature cause my body stress. Maybe that is part of your problem. You might want to ask Dr. Korson about using some Creatine. I wouldn't suggest it without checking. Many mito docs were using only for crashes, but now several are using it daily. I have been taking it every day for about a year. I think helps. Upping your CoQ should also help. I also find that lots of Gatorade or something similar with electrlytes also helps. laurie > Hi, > > I haven't been following the list for awhile but have recently started > reading posts every once in awhile. I see there are questions about > Bos Docs..and now this morning weak feeling. I have Dr Korson as a > specialist in Boston and find him to be very involved when I am sick and > full of common sense suggestions about what to try to mediate symptoms. > He is very overstretched with way more patients than he can handle and > this doesn't allow him to give his best, but he tries hard. Lately I > have had the feeling that he maybe experiencing burnout. > > I had an appt w Dr Simms, but she has a different approach. Dr Korson > comes at it from a metabolic approach rather than a nuerological > approach. I just felt the metabolic approach fits my situation better. > > I am having a relapse that just started a week ago Sunday. I am getting > concerned that it is spinning down and I am having trouble figuring out > what to do for myself. I started having general fatigue, hand and arm > pain and burning from overusing the computer. Then got some bad news > last week that created a lot of stressful situations and my body over > reacted, chest pain and skipping beats. It has been recommended that I > take a stress test. > > I have been trying to rest more and lower the stress but every day > instead of feeling better, I am feeling worse. Yesterday, every muscle > in my body hurt. I couldn't get comfortable no matter what I did. I > had a hard time falling asleep from muscle pain. When I get up to walk > around I feel weaker and after I sit back down, my heart feels like it > is pounding. I seem to be getting nerve ending pain. My sleep is > interrupted, my digestive system is slowed down with other symptoms. I > thought resting would speed up recovery, but now I am wondering if it is > exacerbating it and I need to go back to being more active. > > I am taking QGel and carnitine..2 30mg caps in morning, than 1 30mg at > lunch and dinner. One carnitine 3x a day. At first I cut back on the > supplements because my stomach was rebeling against everything. But now > am going the opposite direction and trying to increase the supplements. > Someone suggested I take alphalipoic acid for the muscle pain, but my > stomach didn't appreciate the new supplement. > > Can anyone make any suggestions for what I might do to speed up the > recovery time? How do you handle a crash? Something to ease the muscle > pain? > > Thanks, > Adam > > > > 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 October 12, 2005 Report Share Posted October 12, 2005 Hi bug, Thanks for your input. I think that is the first time I have heard it suggested that increasing supplements can 'cause' a metabolic imbalance. Is that something the doctors confirm and caution against? Or from your experience? I ask because it was my doctor's office who suggested increasing the supplements. I clearly understand the need for rest. It is always the first thing I do, but I distinctly noticed that my muscle pain " increased " once I started resting more and is escalating the more I rest. Is avoiding caffeine and sugars a recommendation by doctors? What is the reason for that? And when you suggest gatorade, how do you recognize if your electrolytes are off? Certain symptoms? Thanks a lot.. Adam wrote: > > >Message: 7 > Date: Tue, 11 Oct 2005 16:13:10 -0000 > >Subject: Re: Hello..introduction > >Adam, sorry to hear about your recent troubles. I too feel that my >doc's generally look at me from a neuro perspective and not >metabolically...especially when my lab values aren't significantly >off the norm. I can also say that for me, nothing is harder on my >body than emotional stress. My physical symptoms are much more >prevalent and I'm also more suseptible to infection during this >time. There is a viral infection going around that causes flu-like >symptoms. Seems as though many people have it right now. Keep in >mind, this is not flu season, but many viruses are thriving. Aside >from that, you may be creating more of a metabolic imbalance by >increasing your supplements. There aren't any hard-fast rules about >dosages, so it might be that you need less of something and not >necessarily more of something. Your body is obviously telling you >that you need more rest than you are getting...either emotionally or >physically...or both. There are no quick remedies for a crash. >Rest is it. Listen to your body and don't put pressure on yourself >to make a quick recovery...sometimes it takes a little while. >Remember to avoid caffeine and refined sugars and drink plenty of >water...maybe gator aid if you feel like your electrolites are off. >Definately, keep your doc's apprised of any changes in your >supplements and changes in symptoms. Best of luck. I hope you feel >better soon. > >hugs, >bug > > > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 8 > Date: Tue, 11 Oct 2005 18:01:30 -0000 > >Subject: Re: weak feeling > >This is very interesting. I too have increased weakness in the AM. I >really have a hard time with walking and sitting upright the first >few hours of the day. I wonder if this has anything to do with >orthostatic intolernce/dysautonomia???I just found out that I have >low aldosterone and renin levels. They regulate sodium,potassium, >fluid levels in the body and blood pressure. Because of this I have >low blood volume. I wonder if after sleeping and lack of fluids our >blood volume is lower making us weaker and or our levels of >aldosterone and renin are lower and we have decreased potassium??? >Just a thought. Dawn anich > > > >-- In , " Barbara Seaman " >wrote: > > >>Yes, sleep has a negative effect on my weakness and has for many >> >> >years. I > > >>always have to " recover " from sleep, and it can take hours >> >> >sometimes to get > > >>back to my strength/weakness baseline. I'm talking about measurable >>weakness, grade 1-5 Manual Muscle Testing (MMT) scale, not >> >> >fatigue. My rx > > >>potassium, Klor-Con EF helps considerably with this reaction, and >> >> >it IS > > >>typical of low potassium for muscle weakness to get worse at rest. >> >> >I also > > >>have adrenal insufficiency, and I have often wondered if this >> >> >somehow > > >>relates to the sleep/weakness effect. I have asked my neurologist >> >> >if this > > >>reaction to sleep is a recognized neurological phenomenon and he >> >> >says no. We > > >>did do a sleep study but found no major clues there. My arms in >> >> >particular > > >>often feel totally dead when I wake up, very heavy like cement, >> >> >and it takes > > >>quite a while to be able to move them. My gait is also much worse >> >> >after > > >>sleep, especially in the morning, but naps have a similar effect. >> >> >I'm sure > > >>there is some good biochemical, metabolic explanation for this, >> >> >but I have > > >>not found anyone who could tell me what is happening or how to >> >> >prevent it, > > >>other than the potassium issue. If you ever get some clues or >> >> >explanations > > >>from your doctors, I'd be very interested. >> >>Barbara >> >> >> >> >> >>> Re: Boston Docs and Dx Confusion > >Shayna Pearl, > I have seen both Dr. Korson and Dr. Sims in Boston. I read >someone else's post that they feel that these doctors approach the mito >differently, which they do, because of their specialty. That is why I >see both of them. Dr. Korson recommended that I see Dr. Sims as well >since I have a lot of neurological issues. Many people have various >opinions about Dr. Sims. I liked her and liked her approach. She spent >about 2 hours with me and explained a lot of things that my local doctors >have no idea about. I did notice that she really went into family >history and symptoms, which I did like. Everyone is going to have a >different experience with any doctor they see. You need to follow your >mind as to who you feel " fits " better for you. > I do want to welcome you to the group. This is a great group of >people with a lot of knowledge and caring. > >Smiles, >a > >On Wed, 05 Oct 2005 15:27:47 -0000 " shaynapearl " happyclam8@...> >writes: >Hi Everyone, >I posted a message earlier this morning that never appeared. I'm >new to this stuff so perhaps I didn't do it correctly. I'll try >again... > >I am interested in people's suggestions about which Boston-area mito >docs to go to and which ones to avoid. Also, I am confused about >the different feedback I've gotten from the 2 doctors I've seen so >far and wonder if any of you have thoughts on my experience. > >As an intro, I'll tell you that I've had symptoms since I was a kid >(I'm in my early 40's now) and have been disabled for many years. >At first it seemed like autonomic nervous system problems but as I >grew older many symptoms didn't fit that category or behave like >RSD, which was my original diagnosis. Recently, my primary care >physician heard of mito and sent me for evals. So far I know that I >have low carnitine. I am scheduled for more blood and urine tests, >a muscle biopsy, and an exercise test that measures how much oxygen >is getting to my muscles (I think). All at Mass General. > >The first doctor I went to was at Beth Israel (BI). He seemed to be >looking for a precise phenotype but I didn't fit into that. He said >he couldn't diagnose my " cluster " of symptoms. He didn't totally >rule mito out, but he said it was unlikely. Then, I went to Dr. Sims >at MGH. She didn't seem to be looking for an exact phenotype--at >least she didn't mention it. She thought my history of neurological >and muscular pain, fatigue, exercise intolerance, gi problems, >temperature instability, the carnitine deficiency, and a few other >symptoms--along with a first cousin who is in a very similar boat-- >could all be explained by mito. She said that even if the test >results were negative, she would still consider me to possibly have >it. > >I wonder if there is a difference between doctors who only work with >specific, identifiable phenotypes and doctors who take a broader >view. Could that explain the discrepancy between their positions? >I'd be interested in your perceptions. And again, any >recommendations on which Boston docs are better for adults with >possible mito? > >Glad to have found you, >Shayna Pearl > >I am wondering > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi Shayna, Yes, the balancing of rest/activity sounds familiar. It has been about 6 months since I had a crash...longest time period in a long time. So I forget what I have done in the past. You have reminded me that I do have to start there. Small gradual steps toward more activity. I have had very poor experiences with pain meds in the past. I avoid all meds most of the time. I also have nuero symptoms but have not had an autonomic diagnosis, but have had symptoms that clearly involve that at different times. I tend to have sensitivities to meds..to me, neuro docs prescribe a lot. Based on, others I know who see them take meds more than I do. I have symptoms that reflect systemic metabolic imbalances to me and having a doc that is more versed in that makes me feel my concerns are addressed better. Ultimately, I think I chose the doc based on how he responded to me, he cared more...and what he discussed...we speak the same language and focus on the same things. Thanks Shayna..and best wishes for you too :-) <<<<<<<<<<<<<<<<<<<<<<< wrote: > > >___________________________________________ > >Message: 9 > Date: Tue, 11 Oct 2005 12:21:32 -0000 > >Subject: Re: Hello..introduction > >Hi Adam, >I wish I knew what to tell you about your relapse since I have had >very similar symptoms (minus the heart stuff). At one point, it got >so bad I was on morphine. But I don't like the mental side effects >of narcotics and they are fatiguing--and with sensitive digestion, >the constipation that all narcotics cause can be difficult. >Nonetheless, when I'm at my worst, they help me move around more. I >did find for myself that too much rest made things worse. Balancing >rest and movement was essential for me. I gradually increased the >amount of time out of bed--by a few minutes as many times a day as I >could. The muscle pain got worse if I was lying down all the time >and there was too much pressure on my body from that. But too much >activity is obviously not good either. Anyway, that was my >experience but I hesitate to mention it because it's hard to know >how similar our situations really are. Anyway, my heart goes out to >you. I know how hard it is. > >I also hesitate to ask you a question that requires you to use the >keyboard. So I won't be insulted if you don't answer. Please take >care of yourself first. But I was the one asking about Boston >docs. I didn't understand what you meant about the difference >between a metabolic approach and a neuro approach. I'm thinking >neuro might be best for anyway since most of my symptoms are neuro >and I was originally diagnosed with Reflex Sympathetic Dystrophy, an >autonomic nervous system problem. > >Best to you, >Shayna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi Laurie, Thanks for your help. Do you mean creatine? What is that exactly? I keep thinking of creatinine..different right? Is that a protein? I have a protein powder I sometimes use. I will look at the ingredients and see if it has that. I have been drinking a lot, but not gatorade..hate the taste and so sweet. I thought I heard of a drink that was the same but less sweet...can't remember the name...anyone? Thanks laurie.. Adam wrote: > ________________________________________________________________________ > >________________________________________________________________________ > >Message: 15 > Date: Tue, 11 Oct 2005 19:55:15 -0400 > >Subject: Re: Hello..introduction > >Adam > >I am sorry you are feeling poorly. Spring and fall are difficult for >me as the drastic changes in temperature cause my body stress. Maybe >that is part of your problem. > >You might want to ask Dr. Korson about using some Creatine. I wouldn't >suggest it without checking. Many mito docs were using only for >crashes, but now several are using it daily. I have been taking it >every day for about a year. I think helps. >Upping your CoQ should also help. I also find that lots of Gatorade or >something similar with electrlytes also helps. > >laurie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hello Adam-Welcome to the group. I have been offlist for good while and every now &then I pop in to read some messages. I am very sorry you are feeling bad and it seems to not get any better. i am going through that now and I sympathize with you. As per drs I do not have any of the ones listed, so no help there. But have heard Dr Korson is great. You ask some very tough questions. It is important that you REST as much as you are able, since mito feeds off our energy. When in a crash, well I guess it is HUNGRIER and has a tremendous appetite. Be sure to take in plenty of fluids too, continue to eat. One thing I have noticed in a crash is my body gets dehydrated and so I go to the ER and have fluids replaced: one bag glucose, the other saline. This is no by medical advice, it's just what helps me. Then the pain issue-ahhh here goes. What works for some, does not work for others.Just depends how your body reacts..like I said before I am currently in the same boat as you. I have no ideas have to make it speed up, as mito takes its dear sweet time. Sorry i could be of much help. Hope it passes soon for you, saying a prayer for you. Ann > > Hi, > > I haven't been following the list for awhile but have recently started > reading posts every once in awhile. I see there are questions about > Bos Docs..and now this morning weak feeling. I have Dr Korson as a > specialist in Boston and find him to be very involved when I am sick and > full of common sense suggestions about what to try to mediate symptoms. > He is very overstretched with way more patients than he can handle and > this doesn't allow him to give his best, but he tries hard. Lately I > have had the feeling that he maybe experiencing burnout. > > I had an appt w Dr Simms, but she has a different approach. Dr Korson > comes at it from a metabolic approach rather than a nuerological > approach. I just felt the metabolic approach fits my situation better. > > I am having a relapse that just started a week ago Sunday. I am getting > concerned that it is spinning down and I am having trouble figuring out > what to do for myself. I started having general fatigue, hand and arm > pain and burning from overusing the computer. Then got some bad news > last week that created a lot of stressful situations and my body over > reacted, chest pain and skipping beats. It has been recommended that I > take a stress test. > > I have been trying to rest more and lower the stress but every day > instead of feeling better, I am feeling worse. Yesterday, every muscle > in my body hurt. I couldn't get comfortable no matter what I did. I > had a hard time falling asleep from muscle pain. When I get up to walk > around I feel weaker and after I sit back down, my heart feels like it > is pounding. I seem to be getting nerve ending pain. My sleep is > interrupted, my digestive system is slowed down with other symptoms. I > thought resting would speed up recovery, but now I am wondering if it is > exacerbating it and I need to go back to being more active. > > I am taking QGel and carnitine..2 30mg caps in morning, than 1 30mg at > lunch and dinner. One carnitine 3x a day. At first I cut back on the > supplements because my stomach was rebeling against everything. But now > am going the opposite direction and trying to increase the supplements. > Someone suggested I take alphalipoic acid for the muscle pain, but my > stomach didn't appreciate the new supplement. > > Can anyone make any suggestions for what I might do to speed up the > recovery time? How do you handle a crash? Something to ease the muscle > pain? > > Thanks, > Adam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Adam, I wasn't aware that your doc's told you to increase your supplements. Many people here do it on there own without consulting their physician and I don't agree with that. Supplements, as you probably know, are not regulated by the FDA. They absolutely can cause an imbalance if taken incorrectly. Take vitamin E for example...s Hopkins found that in dosages exceeding 400 IU daily it increased the risk of death. I assume your doc's are doing regular blood checks for you to make sure you aren't doing damage to your kidneys, liver, heart etc... Many people take these supplements without knowing if they even need them and are actually causing toxicity to their bodies. It's good to keep an eye on your labs every once in a while. Rest definately needs to be balanced with mild exercise. For some that means passive ( with assistance ) and others are strong enough to walk or swim regularly. I highly recommend it and it may ultimately increase your resistance to crashes. I know I have fewer crashes than I used to when I was in poorer condition. I don't know how much you know about cellular function and oxidative stress, but it's well documented that refined sugars and caffeine cause oxidative stress...that is, stress on the cells and that in and of itself can cause cells to die. Smoking also causes a great deal of oxidative stress, and therefore, cell death. If you have a mitochondrial disease you know that at least some of your mitochondria are already overstressed. Why add to the problem ? Some people are more prone to dehydration. Caffeine causes dehydration, as do vomiting, diarrhea, some foods and definately some supplemnts. Vitamin B2 for example is a diuretic. There are others on the typical list of supplements given as a mito cocktail and I don't recall which ones off hand. Just keep in mind that you may be getting dehydrated and that will cause fatigue and muscle cramps. It's often overlooked and might be a simple solution. Water does not replace lost electrolytes from dehydration. Therefore, for some people, they need something like Gatorade to replace those elecrolytes. Too much of the stuff can also cause an imbalace though and overstress your kidneys if you aren't dehydrated, so be careful. Despite the potential problems with supplements, I highly recommend them if your stomach can handle it. There are many vitamins that people just don't get enough of in their diet. Are you sleeping well ? Poor sleep can cause all sorts of problems and it's typical of mito. Hope this helps. You sound like your well aware of your health needs and your doc's are well informed. Good luck ) bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Adam, I use Propel for electrolyte replacement. I wasn't sure if you had it in your area, but it's got much less sugar than Gatorade. bug Quote Link to comment Share on other sites More sharing options...
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