Discussions By Condition: Muscle conditions

Be gone twitching!! Any ideas on what to search to aid in a Dx?

Posted In: Muscle conditions 33 Replies
  • Posted By: crazydaisylu
  • January 29, 2007
  • 07:07 AM

** This has been posted under neuro as well**
I've recently begun twitching randomly and having weakness. I'd like to fix this but my symptoms aren't fitting into categories for the docs and I need some new ways of looking at this. Up for the challenge?

Ok, starting about 2.5 months ago, I started twitching. I think it's twitching - the medical community and I seem to be unclear as far as which word to use when. It's a brief muscle contraction (not unlike the beginning of a nerve conductivity test) that targets one muscle at a time. Ten seconds, a minute (or few) later it may be elsewhere, but for the moment, it's just once and I can see the area clearly move. It occurs in my legs, feet, hands, arms, neck, jaw and lower lip. Only once or twice has it gone to my hip and one time to the rib cage area. There is no pain or strange sensations. Other than the fact that I didn't request movement. I can still voluntarily control/move it and there is no itching, burning, fluttering, pain... you get the idea. I am more aware of it when I lay down to sleep, in bed before I get up in the morning, sit at my computer chair... but it also happens occasionally at work when I'm busy. This is the main issue but there's a bit more. There's been some hand numbness/tingling for over a year and a half that I never did anything about - I just thought I was cold or something, and loss of sensation in my lower legs. Again, I had no idea. I think we've determined there is some sort of neuropathy (possibly Idiopathic Peripheral Neuropathy as I don't meet other criteria) but that's where any real diagnoses end. The other issue that came along at the same time of the uncontrolled movement/twiching was generalized weakness and a feeling like I was just going to 'drop' (perhaps like passing out {?}, which I don't know because I've never passed out but it's the best way I can explain it). In addition, there are times I'm holding something and look down only to see it slipping from my hand. Just for fun, when I'm holding something lightly, like a piece of paper, my hand crunches down in a jerky, tightening twitch. Again, only once.

All I want is to identify it so I can get rid of the symptoms. But my doc has come up with Restless Leg Syndrome and/or Benign Fasciculation Syndrome. Enlighten me, if you can. I really would be grateful. See, here's the problem I have with that. For the RLS, I have absolutely NO burning, crawling sensations and nothing improves with movement. I do not feel compelled to get up to relieve it. Aren't those the main signs? Plus, would that cause weakness in my hands and twitching in my lower lip? Next is BFS. Everything I've read remarks on how it's more like a repetative, fluttery tic (think by your eye) which this is nothing like that. It's once in one area then it moves on and it's stronger.

I'd be happy if I just felt comfortable with being able to match most of my symptoms OR to exclude something because I don't have the telltale signs. Instead I was given a prescription for $400 for something that hasn't really been diagnosed. My labs came back basically normal with the exception of the Ferretin which was low; all other iron and anemia-related levels are normal. I eat very little meat so that may be the reason for that low level. Healthwise, I was diagnosed as Bipolar just about 5 years ago and that is managed nicely with Lithium. Vertigo is another thing I've lived with for years but the source has never been pinpointed; no meds for that, I just wobble occasionally and walk into a whole lot of doorways. =) Everyone has their idiosyncrasies and such, but I'm basically a healthy (er, mostly) 36 year old female and I don't drink or smoke.

I do not want a 'big' diagnosis, I just want to feel comfortable that the meds (Lyrica) prescribed to me are appropriate. I don't want to just mask something, I want to have it properly named so I can kick it's butt. Personally, I don't think I'm matching those diagnoses but if any of you lovely people out there can throw some knowledge, possibilities, or stories of experience my way, I would truly be grateful.

Thanks for your time - I hope you all find the info you're looking for out there.

Be well.

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33 Replies:

  • Have you been tested for Lyme disease , its co infections and Hashi's thryoid?? Also all the minerals and vitamins like potassium and magnasium?? Lyme and thryoid can cause some pretty strange things to happen. That weakness is really scary. Lyme is also a clinical dx, cause the tests can give false negs, if the right one isn't used. Abt 6 yrs ago, I went through much of what you are saying. They thought I had ms, but didn't have brain lesions. They then gave me the fibro dx...so for 6 yrs I ran the gamit of tests and many meds...They ignored that my thyroid was barely above the tests lowest point for normal. I just kept getting worse. I was finally able to get the docs to test me for Lyme, as I had a strange mark on my thigh close to 20 yrs ago, before lyme was so common in my area.... The test came back positve...I had alot of twitching, mostly around my left eye and that side of my face. But it would move around and sometimes even feel like some one was poking me some place. Restless legs is an other symptom. . Lyme is responsible for many medical conditions we have have today.Hope ya feel better soon.
    Anonymous 42789 Replies
    • February 3, 2007
    • 11:39 AM
    • 0
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  • Thank you for your input! Actually, they tested for Lyme and numerous variations of thyroid, all of course came back startlingly normal. The only element that was low was Ferretin and I'm on supplements for that. Just like you had mentioned, it's a false negative that makes me worry. If I can halt progression or make myself more comfortable or less concerned over what is going on, I'd really like that. Hey, call me selfish. The interesting thing about Lyme is that the onset can be so delayed, so you never really link a simple symptom from years ago to a present condition. My whole life I've had the 'luck' of being on the fringe of the grayest gray area with medicine. I can't get properly diagnosed because tests are inconclusive, the diagnosis doesn't ever fit into a category that is easily explainable, I have reactions to meds they claim 'aren't possible' so eventually they make it clear that they aren't so interested in helping; as if I can alter lab values by sheer will or something. It sounds as if you really had a rough go of it and I think I may look into some of your suggestions a little more. Thinking of the frustration you faced isn't a good thing so the least I can do is take what you've said and apply it. I'm hoping that you continue to improve and applaud the fact that you stuck it out! My twitching is morphing a little and now turning into slower contractions in some areas, not all, although the weakness in my hands is still there. It would be nice to live a day without feeling like I'm going to pass out all the time. Perhaps some day I'll get an answer but until then, I'm going to do more research on the things you mentioned and get another doctor! Thanks for the valuable insight, be well.
    crazydaisylu 23 Replies
    • February 28, 2007
    • 02:49 PM
    • 0
    Flag this Response
  • ** This has been posted under neuro as well**I've recently begun twitching randomly and having weakness. I'd like to fix this but my symptoms aren't fitting into categories for the docs and I need some new ways of looking at this. Up for the challenge? Ok, starting about 2.5 months ago, I started twitching. I think it's twitching - the medical community and I seem to be unclear as far as which word to use when. It's a brief muscle contraction (not unlike the beginning of a nerve conductivity test) that targets one muscle at a time. Ten seconds, a minute (or few) later it may be elsewhere, but for the moment, it's just once and I can see the area clearly move. It occurs in my legs, feet, hands, arms, neck, jaw and lower lip. Only once or twice has it gone to my hip and one time to the rib cage area. There is no pain or strange sensations. Other than the fact that I didn't request movement. I can still voluntarily control/move it and there is no itching, burning, fluttering, pain... you get the idea. I am more aware of it when I lay down to sleep, in bed before I get up in the morning, sit at my computer chair... but it also happens occasionally at work when I'm busy. This is the main issue but there's a bit more. There's been some hand numbness/tingling for over a year and a half that I never did anything about - I just thought I was cold or something, and loss of sensation in my lower legs. Again, I had no idea. I think we've determined there is some sort of neuropathy (possibly Idiopathic Peripheral Neuropathy as I don't meet other criteria) but that's where any real diagnoses end. The other issue that came along at the same time of the uncontrolled movement/twiching was generalized weakness and a feeling like I was just going to 'drop' (perhaps like passing out {?}, which I don't know because I've never passed out but it's the best way I can explain it). In addition, there are times I'm holding something and look down only to see it slipping from my hand. Just for fun, when I'm holding something lightly, like a piece of paper, my hand crunches down in a jerky, tightening twitch. Again, only once. All I want is to identify it so I can get rid of the symptoms. But my doc has come up with Restless Leg Syndrome and/or Benign Fasciculation Syndrome. Enlighten me, if you can. I really would be grateful. See, here's the problem I have with that. For the RLS, I have absolutely NO burning, crawling sensations and nothing improves with movement. I do not feel compelled to get up to relieve it. Aren't those the main signs? Plus, would that cause weakness in my hands and twitching in my lower lip? Next is BFS. Everything I've read remarks on how it's more like a repetative, fluttery tic (think by your eye) which this is nothing like that. It's once in one area then it moves on and it's stronger. I'd be happy if I just felt comfortable with being able to match most of my symptoms OR to exclude something because I don't have the telltale signs. Instead I was given a prescription for $400 for something that hasn't really been diagnosed. My labs came back basically normal with the exception of the Ferretin which was low; all other iron and anemia-related levels are normal. I eat very little meat so that may be the reason for that low level. Healthwise, I was diagnosed as Bipolar just about 5 years ago and that is managed nicely with Lithium. Vertigo is another thing I've lived with for years but the source has never been pinpointed; no meds for that, I just wobble occasionally and walk into a whole lot of doorways. =) Everyone has their idiosyncrasies and such, but I'm basically a healthy (er, mostly) 36 year old female and I don't drink or smoke. I do not want a 'big' diagnosis, I just want to feel comfortable that the meds (Lyrica) prescribed to me are appropriate. I don't want to just mask something, I want to have it properly named so I can kick it's butt. Personally, I don't think I'm matching those diagnoses but if any of you lovely people out there can throw some knowledge, possibilities, or stories of experience my way, I would truly be grateful. Thanks for your time - I hope you all find the info you're looking for out there. Be well.Hi,Do you drink diet soda or use other forms of Aspertame?Thanks,Katina
    Anonymous 42789 Replies Flag this Response
  • Hi Katina, Actually, it is a very rare thing for me to drink any diet soda or soda in general. As far as I know, I don't have alot of aspartame (guess I'd rather have sugar) but I'd better check my shelves to make sure. It could be something I'm overlooking. Thanks! =)
    crazydaisylu 23 Replies Flag this Response
  • Hi. I know this is a simple solution but a few years ago I was twitching like that and my husband suggested it was a lack of potassium. I thought he was nuts, but started eating bananas and about a week later they went away and did not come back. I don't know if this will help or not but somethimes I think Dr.s look make things more complicated than they have to be. Hope it helps, even if it only goes away by half, that would be a start. Take care. Jane
    janesquest 3 Replies Flag this Response
  • I looked up the two meds you mentioned on your original post on www.drugs.com and here is what I found: Drug-Drug Interactionshttp://www.drugs.com/xq/cfm/pageID_1150/int_1/list_1/values_drugid%3Dd00061%26drugid%3Dd05508%26/OpText_Lyrica/dr_%2Clithium%2CLyrica/qx/images/s2.jpglithium and pregabalin (moderate Drug-Drug) Description: MONITOR:Central nervous system- and/or respiratory-depressant effects may be additively or synergistically increased in patients taking multiple drugs that cause these effects, especially in elderly or debilitated patients. MANAGEMENT:During concomitant use of these drugs, patients should be monitored for potentially excessive or prolonged CNS and respiratory depression. Ambulatory patients should be made aware of the possibility of additive CNS effects (e.g., drowsiness, dizziness, lightheadedness, confusion) and counseled to avoid activities requiring mental alertness until they know how these agents affect them. Patients should also be advised to notify their physician if they experience excessive or prolonged CNS effects that interfere with their normal activities.It was unclear if you started taking the Lyrica after having the twitching sensations - is that the case? Either way if you look up side effects of lithium it lists muscle weakness, twitching, and tremors as a side effect.-whenever I hear of someone having unexplained twitching symptoms, drug side effect is the first thing I think about. It doesn't matter if you have been taking these drugs for a while - the effects are cumulative in the body and it is still possible they could be contributing to your problem. Are you taking any other meds? If so, add them to the list and go to the Drug Interaction Checker on www.drugs.com. This is a very good resource to have on hand! Docs just don't check and drug side effects is the last thing they look for (when I believe it should be the first thing!) Last thought I have is that lithium alters the sodium levels in your body, and it is very possible your potassium levels are off as well. The last poster mentioned this and I think that could be right on. Hope this helps!Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Jane, Thanks for the idea! They did test for Potassium and other things and everything but my Ferritin (iron) level was fine. The thing is, those are ranges - they might not be the actual levels that are appropriate for MY body. So my level might LOOK fine on paper, but in reality it may be low. Hmmm, suppose some extra potassium would be good for me no matter what, right? =)
    crazydaisylu 23 Replies Flag this Response
  • DOM, Looks like you are just as suspicious when people tell you 'don't worry' regarding meds! I know precisely what you mean. I almost ended up hospitalized (should have been, actually) after taking three doses of aripiprazole 5mg with my regular lithium. I did research it and since I started on such a low dose, I thought it would be alright. Not so. I've learned to do the checking myself. Unfortunately you may have had a similar experience. As far as the Lyrica, I never actually took it, it was just prescribed - for a condition I do not believe I have. It's a controlled drug. I'm wary of how I may react considering I also had a horrid, 10 day long reaction to carbamazepine a couple of years ago. Both are associated with seizure control, so I was leary. As for the lithium, I am barely in the therapeutic range because for me, mid-high range is nearing toxic. I'm lucky like that. When I first started taking it, I went through the fine motor tremor but it passed after a number of weeks. That being said, I've questioned whether this could still be related to the lithium; like you said, it builds up. Of course I'm told it's not. Being a certified pharmacy technician, my nose is always in a book comparing details that most find mundane. I'm nerdy like that. ;) But if it can help me understand the mechanism of possible cross reactivity, especially when no one else seems to be taking it seriously and my muscles are getting weaker and the twitching is now doing things like moving my foot when it's on the gas pedal of my car... you get the idea. Since I've had books at my disposal for interactions, I've used those. With the link you've provided, I'm sure to be utilizing that resource quickly. Although I'd rather just eat a banana like Jane said! Thanks so much for the ideas, be well.
    crazydaisylu 23 Replies Flag this Response
  • This may sound too simple, but the holistic specialist I see, says twitching muscles is caused by lack of magnesium. You have to set your magnesium to bowel tolerance. I take 500-1000 mg each night before bed to aid in my nervous system health and help my IBS. I have Fibromyalgia, too. Hope this will help you. At least it is not an expensive or dangerous medication. God bless,Beth :)
    mbj3200 1 Replies Flag this Response
  • Beth, I've been thinking about magnesium due to information from different sources. Your story is just another thing to make me think I should request that my doc test my levels. I've heard that you also should do a cellular level test because of how the mag is stored/utilized in the body. I'm glad you found something that works! Thanks for the tip! Be well
    crazydaisylu 23 Replies Flag this Response
  • Crazydaisylu; Have same symptoms. Look into polymyositis. Parkinson's is a possibility at least in my case. Go onto www.wrongdiagnosis.com and plug in all of your symptoms. It is a great site. Any advise you can give me would be grateful. Sympotoms....Trembling (twitching), muscle mass loss, leg weakness and a "hard-heartbeat.
    Michael Hopper 7 Replies
    • December 19, 2007
    • 07:33 AM
    • 0
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  • Crazydaisylu; Have same symptoms. Look into polymyositis. Parkinson's is a possibility at least in my case. Go onto www.wrongdiagnosis.com and plug in all of your symptoms. It is a great site. Any advise you can give me would be grateful. Sympotoms....Trembling (twitching), muscle mass loss, leg weakness and a "hard-heartbeat. Michael, thanks for the input. I checked right away into the polymyositis and there are several things there that make sense of what I've been experiencing. Your mention of the 'hard heartbeat' was spot on!!! Interestingly, it mentioned somewhere that the symptoms get worse then calm to what they term 'remission' then flare back up again. At this point, I've had all the bloodwork done that seems plausible and have gone through various tests (even mitochondrial testing), switched doctors and my doc and I decided to call it quits for now. He said that one of three things will happen. Either it'll get better, stay the same, or get worse with the possibility of new symptoms. If it gets worse, then new testing can begin. Meh, not exactly what I was looking for, but oh well. I do the best I can to cover for my weakness/lack of coordination when I'm at work so they don't realize it. Most of my twitching happens once I stop running around like a maniac at work so that's easy to handle. The hard part for me, and I'm sure you've felt the same, is that you are going about your life with no clear answer as to what is wrong. If it's wrong, fine - just give me the opportunity to fix it to the best of my ability. Some of the NIH neurology sites are good for additional info. Best of luck on your search. Btw, has anyone suggested myesthenia gravis? I'd be interested to hear what else you find out if you're up for sharing. Thanks!
    crazydaisylu 23 Replies
    • December 20, 2007
    • 04:50 AM
    • 0
    Flag this Response
  • Crazydaisylu; Have same symptoms. Look into polymyositis. Parkinson's is a possibility at least in my case. Go onto www.wrongdiagnosis.com and plug in all of your symptoms. It is a great site. Any advise you can give me would be grateful. Sympotoms....Trembling (twitching), muscle mass loss, leg weakness and a "hard-heartbeat. Michael, thanks for the input. I checked right away into the polymyositis and there are several things there that make sense of what I've been experiencing. Your mention of the 'hard heartbeat' was spot on!!! Interestingly, it mentioned somewhere that the symptoms get worse then calm to what they term 'remission' then flare back up again. At this point, I've had all the bloodwork done that seems plausible and have gone through various tests (even mitochondrial testing), switched doctors and my doc and I decided to call it quits for now. He said that one of three things will happen. Either it'll get better, stay the same, or get worse with the possibility of new symptoms. If it gets worse, then new testing can begin. Meh, not exactly what I was looking for, but oh well. I do the best I can to cover for my weakness/lack of coordination when I'm at work so they don't realize it. Most of my twitching happens once I stop running around like a maniac at work so that's easy to handle. The hard part for me, and I'm sure you've felt the same, is that you are going about your life with no clear answer as to what is wrong. If it's wrong, fine - just give me the opportunity to fix it to the best of my ability. Some of the NIH neurology sites are good for additional info. Best of luck on your search. Btw, has anyone suggested myesthenia gravis? Has an EMG been helpful? I'd be interested to hear what else you find out if you're up for sharing. Thanks!
    crazydaisylu 23 Replies
    • December 20, 2007
    • 04:52 AM
    • 0
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  • I have very similar symptoms to yours and I checked all the web maybe for an explanation,and when I come to beleive one,diffferential diagnosis eliminates it,and Im still searching..I'd like to know if you tend to feel hungry when these twitches attack you,-a kind of compensatory action from your body to the state of weakness you feel-,because I tend to feel so that I know Im concerned about gaining wheight in the end!By the way I was so near to beleive its hypoglyceamic attacks but the glucose levels were ok after all:confused:
    omomar 9 Replies
    • February 12, 2008
    • 03:36 PM
    • 0
    Flag this Response
  • I have very similar symptoms to yours and I checked all the web maybe for an explanation,and when I come to beleive one,diffferential diagnosis eliminates it,and Im still searching..I'd like to know if you tend to feel hungry when these twitches attack you,-a kind of compensatory action from your body to the state of weakness you feel-,because I tend to feel so that I know Im concerned about gaining wheight in the end!By the way I was so near to beleive its hypoglyceamic attacks but the glucose levels were ok after all:confused: Omomar, I'm sorry to hear you have a mystery situation going on, too. Funny thing I've learned is that even though you may have a test some back as 'negative' it may not be accurate. Example: A large number of Lyme disease as well as Rheumatoid arthritis diagnostic tests get repeated false negatives. It's just how it works. Or doesn't, as the case may be! The weakness I personally feel is mainly relegated to my hards and lower forearms and may or may not happen together. I do have issues with hypoglycemia but have for years and it appears unrelated. Maintaining an even sugar intake helps my glucose levels remain normal. Otherwise, if I have too much sugar and go back to eating normal the next day, it plummets. A well rounded diet helps instead of just ingesting sugar because I think that is specifically what I am lacking. I think anything that we eat (other than protein) gets converted into sugar, so it's just about finding what can sustain you longer without the load of sugar. I was lucky as my twitching decreased for the past month or so but has come back. So has the hand weakness. At this point all I can do is log symptoms in an attempt to have something for my doc should I need it. Have you tried a different doc or would you consider it? Often a new outlook can be helpful. It is so frustrating when you want it to stop and there are no answers. I wish you all the luck! Be well.
    crazydaisylu 23 Replies
    • February 13, 2008
    • 01:42 AM
    • 0
    Flag this Response
  • Hi everyone,I know this thead appeared a long time ago, I have exactly the same symptoms as the member which started this thread. I have been taking a drug called Abilify for a few years and think it is a side effect of that. I have been taking magnesium tablets the last few days, i guess they may take some time to have an effect. Anyway, If the member which started this thread is now symptom free or has found anything that help to get rid of some of the twitching then please let me know, this is ruining my life. I have had acupunture which is a hit or miss affair, one time it cured me for a whole month and other times it has made me worse, I would appreciate any input if anyone out there has any. kind regards Dave
    Dave GX 2 Replies Flag this Response
  • Hi all,actually I didnt find out till now what was going wrong wih me exactly,but the good news was that I cut down caffeine and colas and such things and WOW!!I really felt much better ,no tingling nor twitching nor burning sensations in my legs and feet any more!knowing that I was a heavy caffeine consumer in the past,and also I found out I was anaemic and I am on iron and folic acid tabs,maybe those helped too with my case...good luck!
    omomar 9 Replies Flag this Response
  • Hi everyone,I know this thead appeared a long time ago, I have exactly the same symptoms as the member which started this thread. I have been taking a drug called Abilify for a few years and think it is a side effect of that. I have been taking magnesium tablets the last few days, i guess they may take some time to have an effect. Anyway, If the member which started this thread is now symptom free or has found anything that help to get rid of some of the twitching then please let me know, this is ruining my life. I have had acupunture which is a hit or miss affair, one time it cured me for a whole month and other times it has made me worse, I would appreciate any input if anyone out there has any. kind regards Dave Dave GX, Sorry to learn you're having a similar problem. I'll tell you what I know, although it isn't much. My symptoms went on at a pronounced rate until I hit the one year point. Since then (about 7 months ago) it has decreased to a level equivalent to about 20% of what it was at it's worst. I gave up with the docs for now. I had a neurologist that I felt comfortable with and he ran just about every test he could, including mitochondrial testing. Every single thing is 'normal' Ha. I've basically learned to deal with it until it gets worse or goes away. Easy to say now since it has backed off; if it would have stayed at that level I'd be full on nuts by now. There isn't anything I changed in diet, treatments, behavior, meds, etc to explain the reduction in symptoms. If the acupressure works, even temporarily, that may be the key for you. Of course only if the ratio of it making you better:worse is sensible. Perhaps it is associated with a nerve(s) and this eases it. Take the reprieve where you can if you are still up for the treatments. As far as Abilify, it tried to kill me so I have nothing good to say about it. In fairness, it was that in combination with another med I was on at a higher dose. I had taken 5mg daily to start and on the third day I should have been hospitalized although I was too stubborn to go. Eventually the hallucinations went away. One thing I'll add about meds is that some docs offer muscle relaxants. If it is neurological and not truly your muscles, it won't help. Here's something else to consider - there is a connection between twitching and use of certain classifications of antibiotics, namely (fluoro)quinolones such as Levaquin and Avelox. Nothing mentioned about weakness but just that twitching can be a latent effect and not surface for years. Every time I twitch I get scared that it is coming back full force. I have yet to pin down a trigger which is maddening. I do wish you the best in your search for answers. Feel free to let me know if you find relief, either here or link to my email. All the best, CrazyDaisyLu
    crazydaisylu 23 Replies Flag this Response
  • >> I should also add to the comment about (fluoro)quinolones... Don't avoid them for that reason. I still take them even though I know the rare risk. The way I see it, if I don't live through the infection I won't have twitching (or anything else) to worry about ever again. In the past several years I'd estimate I took at least 8 full courses of Levaquin alone. If there is a link for me, it is already there and to stop taking the meds will not reverse it. ** I say this solely because I don't want to frighten anyone away from any med that will help them on a 'what if' basis. ** Besides, if most people read up on their most common meds (ie: Tylenol, aspirin, etc) no one would take those either. =)
    crazydaisylu 23 Replies Flag this Response
  • Hi all,actually I didnt find out till now what was going wrong wih me exactly,but the good news was that I cut down caffeine and colas and such things and WOW!!I really felt much better ,no tingling nor twitching nor burning sensations in my legs and feet any more!knowing that I was a heavy caffeine consumer in the past,and also I found out I was anaemic and I am on iron and folic acid tabs,maybe those helped too with my case...good luck! Omomar, Congrats to you! In the end, that is a rather simple solution to a problem that was plaguing you so that must make you very happy. Thank you for passing on that information. I might look into a folic acid link, too. Admittedly my caffeine intake is going higher lately so I'll have to make more of an effort there. Thanks so much, CrazyDaisyLu
    crazydaisylu 23 Replies Flag this Response
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