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Old 03-25-2014, 09:20 AM #21
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I have found in practice that doctors are extremely reluctant to speak to their patients about weight. As a school nurse, most of the doctors I spoke with concerning a students weight requested I speak with them and their parents about it. I have never understood why.
(IMO) Among other things, confrontation & hostility. In recent years, there has been a backlash of radicalism regarding being overweight/obese, with clarion calls like, "Why fat doesn't mean unhealthy", "Just because you're overweight doesn't mean you're not healthy", "You can be fat and fit", etc. etc.

While there is some truth that weight isn't everything, and people should not be discriminated against/ostracized for legitimate weight issues, some—perhaps many—are using this as justification/rationalization for being unhealthily overweight. Some are just defensive; others are downright aggressive/militant about it.

See also my previous.

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Old 03-27-2014, 09:05 PM #22
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Omega-3 fats are essential to repairing myelin. They use cofactors--- B12, folate, magnesium, B6, Vit D.

If you are damaged for many years, it may not be possible to correct everything. Some cells die, and their axons shrivel away.
They are not replaced. The body can repair up to a certain point, and then ...well... that is it.

Also when you exercise, you generate alot of free radicals, and this along with the Omega-3 deficiency....accelerates damage to the nerves.

The MSers, therefore use foods, with polyphenols and antioxidants, to prevent further damage. Dr. Wahl's TED lecture and book go into that.
http://www.youtube.com/watch?v=KLjgBLwH3Wc
Thank you Mrs. D!
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Old 03-29-2014, 08:28 PM #23
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Hi Cat,
Sorry, it took me a while to get back too you. I'm really happy to hear you have children. When you said you haven't had a period in 21 years I thought you may have had trouble conceiving. How old is your child/children?

I don't think you mentioned if you have health insurance or not. If you do, call the number on the back of the card and ask them for the names of counselors who will take your insurance. If you do not have insurance get the list anyway. If money is an issue many counselors will charge on a sliding scale bases on salary.

As for your exercise, that is quite a bit for the amount of calories you take in. I know cross fit is extreme exercise. I have never done hot yoga but have heard it is difficult. I was very into working out before I got sick. I was at the gym 4-6 days a week for 2 1/2 hours. In order to be that active the body requires much more than normal in the way of calories.

I have found in practice that doctors are extremely reluctant to speak to their patients about weight. As a school nurse, most of the doctors I spoke with concerning a students weight requested I speak with them and their parents about it. I have never understood why. I applaud your GYN for addressing it.
Did the fertility specialist mention it? That's one of the issues they usually address. I suspect, if you were this thin for years it was probably the cause for your periods stopping or at the least it should have been looked into.

I believe you do want to be hungry and enjoy eating. This is an extremely difficult situation your in, those words are not powerful enough to even describe the situation, but it's all I can think of right now. Your words were good, it is maddening.

By saying you have taken most of your calories in liquids, did you mean alcohol. If so, have you gone on the searches here to see what supplements you may need. There are people here that can help you with that.

If you want my opinion, I do suspect, you suffer from an eating disorder. I would definitely see someone. Possibly your GP. Don't wait for him/her to bring up your weight. Make weight the reason for your visit. Perhaps they can even point you in the right direction for counseling. As I said before though, it is not for me to diagnosis.

I don't know anything about your life circumstances but this is sometimes the reason eating disorders occur. Weight is one of the few things we have complete control over when everything else seems to be spiraling down around us.

Did you read about the connection between neuropathy and anorexia. It is interesting. I was not aware of the connection.

I hope this helps a little.
Hopeful
Thank you so, so much Hopeful. I was not aware of the connection either but had a suspicion after reading about how alcohol neuropathy often stems from nutritional deficiencies. And yes, I tended to drink wine pretty much every night and it would suppress my appetite making me eat even less. Then when I decided to quit drinking due to the neuropathy symptoms, I still ate the same amount and lost even more weight. On top of it all, I contracted a nasty parasite a few years ago and plummeted to the 87 pounds I have held onto for this long.

The fertility specialists did bring it up, but did not go into depth. I really think in our society of ultra thin being the optimal, low weight may not be seen as unhealthy until it is a hospitalization issue. Or as you said, doctors are just reluctant to discuss it. They ran all kinds of tests anyway and nothing came back positive so my official diagnosis was amenorrhea. Thankfully, I was still able to have children with a series of high dosage FSH/HCG injections. I have two 9 year old boys and a 4 year old boy.

Upon your advice and others, I did see my GP this week and she said gaining weight to a normal BMI would be beneficial. Since she is a GP, I believe that neuropathy is beyond her family practice. Again, there was not a huge concern....she did not say "you probably do have an eating disorder and we need to treat it." She did say I should discuss this with my neurologist. So I went in to see her as well and she seemed to think that while this may not have helped my situation, she is also reluctant to say it is the cause.

I tend to agree with you all that there is a definite connection here and so I am also going to see an eating disorder specialist. Nothing else has seemed to help my condition so it is worth a try! While the pain in my hands and feet have not improved with the increased caloric intake, the dizziness and muscle weakness is definitely better! It has been about three weeks and I have definitely gained weight although it is actually hard work for me...

Are you still not able to workout? At times it makes me so exhausted and my feet hurt to the point that I can barely function the rest of the day-but it is also my sanity. How can something so good for you become bad????

Thanks again for all the thought you put into your responses to me and to everyone on this forum. Between you, Dr. Smith and Mrs. D you could start a medical facility of your own
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Old 03-30-2014, 11:57 AM #24
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I did see my GP this week and she said gaining weight to a normal BMI would be beneficial. Since she is a GP, I believe that neuropathy is beyond her family practice.
If the personal experiences of this group are any indication, it seems to be beyond many/most neuros as well.

Quote:
I tend to agree with you all that there is a definite connection here and so I am also going to see an eating disorder specialist. Nothing else has seemed to help my condition so it is worth a try!
I've developed a philosophy over the years that I repeat often—If it can't hurt to try it, then it can't hurt to try it.

It works on a number of levels—the more I thought about it, the more (ways) it makes sense.

We're rooting for you.

Doc
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cat1234 (03-31-2014), hopeful (04-04-2014)
Old 04-04-2014, 08:39 PM #25
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Thank you so, so much Hopeful. I was not aware of the connection either but had a suspicion after reading about how alcohol neuropathy often stems from nutritional deficiencies. And yes, I tended to drink wine pretty much every night and it would suppress my appetite making me eat even less. Then when I decided to quit drinking due to the neuropathy symptoms, I still ate the same amount and lost even more weight. On top of it all, I contracted a nasty parasite a few years ago and plummeted to the 87 pounds I have held onto for this long.

The fertility specialists did bring it up, but did not go into depth. I really think in our society of ultra thin being the optimal, low weight may not be seen as unhealthy until it is a hospitalization issue. Or as you said, doctors are just reluctant to discuss it. They ran all kinds of tests anyway and nothing came back positive so my official diagnosis was amenorrhea. Thankfully, I was still able to have children with a series of high dosage FSH/HCG injections. I have two 9 year old boys and a 4 year old boy.

Upon your advice and others, I did see my GP this week and she said gaining weight to a normal BMI would be beneficial. Since she is a GP, I believe that neuropathy is beyond her family practice. Again, there was not a huge concern....she did not say "you probably do have an eating disorder and we need to treat it." She did say I should discuss this with my neurologist. So I went in to see her as well and she seemed to think that while this may not have helped my situation, she is also reluctant to say it is the cause
I tend to agree with you all that there is a definite connection here and so I am also going to see an eating disorder specialist. Nothing else has seemed to help my condition so it is worth a try! While the pain in my hands and feet have not improved with the increased caloric intake, the dizziness and muscle weakness is definitely better! It has been about three weeks and I have definitely gained weight although it is actually hard work for me...

Are you still not able to workout? At times it makes me so exhausted and my feet hurt to the point that I can barely function the rest of the day-but it is also my sanity. How can something so good for you become bad????

Thanks again for all the thought you put into your responses to me and to everyone on this forum. Between you, Dr. Smith and Mrs. D you could start a medical facility of your own
Hi Cat,
I haven't been feeling real great so I haven't been on here in a while.

I'm really glad you are trying to gain some weight now. It great that some of the dizziness and muscle weakness is going away. That's terrible that you had a parasite too. I'm sure that made things a lot worse.

You may never know if your neuropathy was caused by the lack of nutrition. Does it really matter? Getting healthier is the most important thing. I know I may never know the reason for my neuropathy. I'd be lying, if I said sometimes I don't still search for the answers. But, most of the time I accept not knowing and concentrate on finding things that help to ease some of my pain.

I'm proud of you that you are going to see someone who works in eating disorders. I realize what a huge step this is. They would be the best source to tell you if you have a eating disorder.

I am still not able to work out but recently I stared PT to help build my muscle strength back. It leaves me in pain afterward but it subsides. Emotionally it makes me feel better.

No need to thank me. We all help one another here.

Hopeful
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Old 04-11-2014, 09:37 PM #26
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Okay I feel like I a, doing everything right!!! Eating more, gaining weight, managing my symptoms with as few medications as possible and then BAM! I get hit with the worst day in a long time.

As previously discussed in this forum, I am seeing an eating disorder specialist. This past week she diagnosed me with anorexia. I am underweight and have been a restrictive eater for years-but I never would have guessed this diagnosis. I also consumed about 3 glasses of wine nightly. None of my doctors seemed to think this had anything to do with my condition but I quit drinking anyway to be safe. Every once in a very long while over the past two years I have a little something when out celebrating but I have lost the interest in it. I may have been an alcohol abuser before the neuropathy with the nightly routine of wine.. but giving it up was not too difficult.

I was feeling good last week and my hubby convinced me to try one drink Friday. I felt great the next day and had a drink at dinner again on Tuesday with family and friends. I felt fine Wednesday. But yesterday I felt sick to my stomach, the pain in my legs was ten times worse, non-stop diarrhea and now today the pain, fatigue and nausea are so bad I am useless and in bed.

For those of you who have tried to have a sip of alcohol, what happens over the next few days?? Icehouse you mentioned having a beer reverts you back weeks-can you tell me what happens? I am scared that this is it and I have put all my gains in jeopardy. The pain has never been like this nor the fatigue. I could have a stomach bug on top of it but it seems too much of a coincidence??? Will this pass if it was caused by the alcohol? And if that is indeed the cause why the delayed reaction?

Sorry Mrs D you told me to avoid alcohol and I tested the waters again. But this is really bad. I do not understand wht is happening to me. It is like having the stomach flu plus the pain shooting up my legs. But why would it happen days afterwards if that is the culprit??!!!
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Old 04-12-2014, 10:04 AM #27
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Hi Cat,

I recently wrote about some triggers being difficult to identify because of a delay in causing symptoms, and others that I can get away with once, but more than that and the hammer falls.

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But why would it happen days afterwards if that is the culprit??!!!
Why do some poisons kill in seconds, but others take hours, days, weeks, months, or years? The short answer is metabolism. Some chemicals metabolize fairly rapidly (within a few hours) but take longer to get down to affecting cells/tissues and/or clearing the system. In some cases, it's not the trigger per se, but its metabolites that are causing the symptoms/doing the damage (not that that makes much difference).

In the case of alcohol...
Quote:
How Long Does Alcohol Stay in Your System?

The following is an estimated range of times, or detection windows, during which alcohol can be detected by various testing methods:

Breathalyzer Test: Up to 24 hours.
Urine Test: 3-5 days via Ethyl Gluconoride (EGT) metabolite or 10-12 hours via traditional method
Blood Test: 12 hours`
Saliva Test: 1-5 days

Like many other drugs, alcohol can be detected with a hair follicle drug test for up to 90 days.
There may also be a quantity or cumulative factor.

I don't know that there's any way at this time to determine if one of those possibilities is going on with you, or as you mention, you have a coincidental virus, or something that hasn't been figured out/thought of—e.g. another trigger.

It's been suggested when trying to identify triggers to wait a week or two between exposures to allow your system to clear.

Doc
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Old 04-12-2014, 11:49 AM #28
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[QUOTE=cat1234;1062955]Okay I feel like I a, doing everything right!!! Eating more, gaining weight, managing my symptoms with as few medications as possible and then BAM! I get hit with the worst day in a long time.

As previously discussed in this forum, I am seeing an eating disorder specialist. This past week she diagnosed me with anorexia. I am underweight and have been a restrictive eater for years-but I never would have guessed this diagnosis. I also consumed about 3 glasses of wine nightly. None of my doctors seemed to think this had anything to do with my condition but I quit drinking anyway to be safe. Every once in a very long while over the past two years I have a little something when out celebrating but I have lost the interest in it. I may have been an alcohol abuser before the neuropathy with the nightly routine of wine.. but giving it up was not too difficult.

I was feeling good last week and my hubby convinced me to try one drink Friday. I felt great the next day and had a drink at dinner again on Tuesday with family and friends. I felt fine Wednesday. But yesterday I felt sick to my stomach, the pain in my legs was ten times worse, non-stop diarrhea and now today the pain, fatigue and nausea are so bad I am useless and in bed.

For those of you who have tried to have a sip of alcohol, what happens over the next few days?? Icehouse you mentioned having a beer reverts you back weeks-can you tell me what happens? I am scared that this is it and I have put all my gains in jeopardy. The pain has never been like this nor the fatigue. I could have a stomach bug on top of it but it seems too much of a coincidence??? Will this pass if it was caused by the alcohol? And if that is indeed the cause why the delayed reaction?

Sorry Mrs D you told me to avoid alcohol and I tested the waters again. But this is really bad. I do not understand wht is happening to me. It is like having the stomach flu plus the pain shooting up my legs. But why would it happen days afterwards if that is the culprit??!!![/

HiCat ,
I don't know if you drank wine but that put me in a downward spiral. I don't know what is in it but it leaves me in pain for a few days. Which is a shame. Not that I ever drank much but if it was anything it was a good glass of red.

This may be caused by the drinking, or not. There is a norovirus that is going around that has the symptoms you refer to. I would think dealing with non-stop diarrhea would put stress on your body and cause a flare up. Not knowing if it was the drink or not, I'd think about whether it is worth this the next time your husband encourages you to go for it. I'm not blaming him, I just think they don't understand and would love to have the old us back.

I'm so proud of you for working with an eating disorder specialist. It will be worth it. It may not take away the neuropathy but certainly will help you to live a healthier life.

Hoping that this passes for you very soon!
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Old 04-12-2014, 01:54 PM #29
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[QUOTE=hopeful;1063035]
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Originally Posted by cat1234 View Post
Okay I feel like I a, doing everything right!!! Eating more, gaining weight, managing my symptoms with as few medications as possible and then BAM! I get hit with the worst day in a long time.

As previously discussed in this forum, I am seeing an eating disorder specialist. This past week she diagnosed me with anorexia. I am underweight and have been a restrictive eater for years-but I never would have guessed this diagnosis. I also consumed about 3 glasses of wine nightly. None of my doctors seemed to think this had anything to do with my condition but I quit drinking anyway to be safe. Every once in a very long while over the past two years I have a little something when out celebrating but I have lost the interest in it. I may have been an alcohol abuser before the neuropathy with the nightly routine of wine.. but giving it up was not too difficult.

I was feeling good last week and my hubby convinced me to try one drink Friday. I felt great the next day and had a drink at dinner again on Tuesday with family and friends. I felt fine Wednesday. But yesterday I felt sick to my stomach, the pain in my legs was ten times worse, non-stop diarrhea and now today the pain, fatigue and nausea are so bad I am useless and in bed.

For those of you who have tried to have a sip of alcohol, what happens over the next few days?? Icehouse you mentioned having a beer reverts you back weeks-can you tell me what happens? I am scared that this is it and I have put all my gains in jeopardy. The pain has never been like this nor the fatigue. I could have a stomach bug on top of it but it seems too much of a coincidence??? Will this pass if it was caused by the alcohol? And if that is indeed the cause why the delayed reaction?

Sorry Mrs D you told me to avoid alcohol and I tested the waters again. But this is really bad. I do not understand wht is happening to me. It is like having the stomach flu plus the pain shooting up my legs. But why would it happen days afterwards if that is the culprit??!!![/

HiCat ,
I don't know if you drank wine but that put me in a downward spiral. I don't know what is in it but it leaves me in pain for a few days. Which is a shame. Not that I ever drank much but if it was anything it was a good glass of red.

This may be caused by the drinking, or not. There is a norovirus that is going around that has the symptoms you refer to. I would think dealing with non-stop diarrhea would put stress on your body and cause a flare up. Not knowing if it was the drink or not, I'd think about whether it is worth this the next time your husband encourages you to go for it. I'm not blaming him, I just think they don't understand and would love to have the old us back.

I'm so proud of you for working with an eating disorder specialist. It will be worth it. It may not take away the neuropathy but certainly will help you to live a healthier life.

Hoping that this passes for you very soon!
Yes, I think you are right about those close to us wanting the old fun me back. It must be hard for anyone to understand how debilitating the pain and fatigue can be-especially since it is not life threatening like cancer and so many other awful diseases. I overheard one friends husband say "I think its all in her head" which made it all too clear to me that we don't look sick so how cm anyone else relate?

Btw it was not wine. I had read an old post by Mrs D about the additives in wine being a problem for many and that pure alcohol seems to be less problematic or those who can tolerate alcohol. So I tried a Patron Silver with soda. Just in case that was it I am done with the alcohol for good. Just knowing I can be this sick again is enough to steer me away. And it definitely can't hurt to cut alcohol out!

Thanks for the encouragement on the ED route. I cannot eat anything now without feeling sick to my stomach which is not helping. But hoping this will pass....
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Old 04-12-2014, 01:57 PM #30
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Hi Cat,

I recently wrote about some triggers being difficult to identify because of a delay in causing symptoms, and others that I can get away with once, but more than that and the hammer falls.



Why do some poisons kill in seconds, but others take hours, days, weeks, months, or years? The short answer is metabolism. Some chemicals metabolize fairly rapidly (within a few hours) but take longer to get down to affecting cells/tissues and/or clearing the system. In some cases, it's not the trigger per se, but its metabolites that are causing the symptoms/doing the damage (not that that makes much difference).

In the case of alcohol...


There may also be a quantity or cumulative factor.

I don't know that there's any way at this time to determine if one of those possibilities is going on with you, or as you mention, you have a coincidental virus, or something that hasn't been figured out/thought of—e.g. another trigger.

It's been suggested when trying to identify triggers to wait a week or two between exposures to allow your system to clear.

Doc
Wow so my body could take a few days to metabolize alcohol. Then that may be a huge trigger in my case. Do you have a link to your old thread discussing triggers and delay factors? I would like to read it in more detail. And perhaps it was a cumulative factor...in that I had a drink and then had another several days later. Thanks for the information!!!
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