Symptoms

[Guest guest]

Which of the following symptoms would you stop a food and which would you just

" push through? "

Our (i.e., me and DS who is breastfeeding as well as starting solids) current

list of foods are SO limited, and not filling enough that I feel in a bind.

1. Bump that looks like a mosquito bite but is not itchy

2. Sneezing

3. Hiccuping

4. Flatulence

DS also can get these symptoms:

5. Ring around anus gets more pink (but at least is not red anymore)

6. Gets more fussy/whiny

7. Unknown reason for crying

8. Blank staring for a few seconds

Trying to add in foods that make us feel more full, like pumpkin, broccoli,

cauliflower,.... but not sure whether to proceed or not. Things are getting

super hard being so limited for so long on foods that don't fill us up. I

already tried the recommendation of eating a lot more meats and fats but it

still doesn't work to fill me up.

Thank you for any advice!

& DS

[Guest guest]

Have you tried the infant's formula in the BTVC book?  It's DCCC (not sure if that's the cheese you meant), nuked honey (boiled I think to kill anything in it) and something else.  I have made it when I was having bad spasms and I added 1 T. very light olive oil.  It was just right.  You mash it all together.  I do not remember the exact formula though or instructions but it's in the book or maybe someone can post it.

 

Debbie 41 (no kids) cd

 

Licia, thank you so much for your reply! I can't find a solution to find foods that fill us up that don't cause reactions. We tried goat yogurt, bananas, avocados, pumpkin, nut butter, seed butter, and cheese. We also can't tolerate shellfish, fish, possibly eggs. And now because there is an outbreak of illness among the cows and pigs, DH doesn't want me to chance eating beef or pork!

DS is 17 months old. Tried to introduce solids at 6 months, but he got reactions, so only just recently tried introducing solids again. Everything pureed and cooked, he can't tolerate it otherwise. Except I just started a few fruits like melon and apricot, but if I give too much, he gets yeasty.

He reacts to foods individually himself, and also to my milk if I ate something I didn't tolerate.Foods we both tolerate: green beans, asparagus, zucchini, cucumber, beef, pork, and octopus. Thanks for the oatmeal advice, I think that sounds great and will give it a try!

I don't know if there really is a solution to my problem, since there are only so many foods, and if neither of us can tolerate it, well, no one can magically create more foods to appear for us, .... so perhaps, this is just a sob story looking for commiseration. But still, some days, I barely have energy and feel faint because not only is it all non-filling foods, but having to do all that extra work and take time to prep DS's food, sometimes, I don't even get a chance to prep my own food, which also is so much more extra work since everything is all fresh, not processed. Also using up so much more energy now that I am dealing with a toddler who is so active and walking all over the place.

& DSRocky SCD journey which started 8/09

> >> > Which of the following symptoms would you stop a food and which would you just " push through? " > > > > Our (i.e., me and DS who is breastfeeding as well as starting solids) current list of foods are SO limited, and not filling enough that I feel in a bind.

> > > > 1. Bump that looks like a mosquito bite but is not itchy> > 2. Sneezing> > 3. Hiccuping> > 4. Flatulence> > > > DS also can get these symptoms:

> > 5. Ring around anus gets more pink (but at least is not red anymore)> > 6. Gets more fussy/whiny> > 7. Unknown reason for crying> > 8. Blank staring for a few seconds> >

> > Trying to add in foods that make us feel more full, like pumpkin, broccoli, cauliflower,.... but not sure whether to proceed or not. Things are getting super hard being so limited for so long on foods that don't fill us up. I already tried the recommendation of eating a lot more meats and fats but it still doesn't work to fill me up.

> > > > Thank you for any advice! > > & DS> > > Hi > > Well done for breastfeeding! You must be starving all of the time! Can I ask how old your baby is? What foods have you tried to give him? Are they raw or cooked, whole or pureed?

> > I'm not sure which of the symptoms might be caused by the food you or your DS are eating, or if any of his symptoms are a reaction to something you might be eating, or whether they're just something he's doing at any one time! You will know best what is normal and what is different for your baby. I think its just a case of experimenting and continuing to observe him. My experience was that whenever I had dairy, my daughter would vomit a feed, no distress, just bleah without warning, and then she would keep going as if it had never happened. I cut out all dairy for a couple of months, then tried again, and sure enough, she'd bring it up. Shortly afterwards, my body stopped tolerating dairy altogether! Its only been in the last month that neither of us has had a reaction to it. Also, too much citrus fruit or juice were the only things that would ever give her a nappy rash, and would always make her cry from the stinging poo (and the best solution I found was to put her into an oatmeal bath (put a large amount of plain oatmeal in a knee high stocking, knot the top, and put in bath as you're running it - use stocking as a sponge, and easier to clean up tub afterwards) - she would go in red and raw and come out with barely any colour difference on the previously affected skin).

> > Its always a time of readjustment for a baby's digestive system when they are trying new foods, especially when food is introduced for the first time. The gut ecology of a breastfed infant is unique, and when something else is introduced, it changes to the same gut ecology as an adult, but will revert to an infant's in 2-4 weeks with the resumption of exclusive breastfeeding. Do you think your DS is more fussy/whiny on days he's eaten certain foods?

> > Can you post what you are eating? Broccoli and cauliflower are usually considered more advanced foods, and can cause gas in some people. Can you have dairy? The dripped yogurt is very filling, both uncooked as well as cooked into a cheesecake. Also eggs and avocadoes, as well as cheese (by itself or melted on food - eg, melted on baked squash) is nicely filling. Can you tolerate nut butters yet? (However, dairy, nuts, and egg whites (and of course, honey) are not recommended for infants under 12 months.)

> > Licia> colitis/SCD feb 2006> no meds since july 2006>

[Guest guest]

I had the same for about a week, finally went to the Doctor, and  he ordered an ultrasound of my gallbladder and liver for the next day, well I had such a bad night, that I called and canceled, and started feeling better that day, now I feel fine, I never got the ultrasound, figure it was just the flu:)  so hopefully you'll feel better in a day or so, if not you should see your doctor.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

For the past few days I have been suffering from these symptoms; severe nausea, chills, occasional runny nose, night sweats, and some sleepiness.  I would think it was the flu, but it comes on in the morning, gets better in the afternoon, comes back on in the evening, and is better again by bedtime.  I am befuddled! 

To: Neurosarcoidosis

Sent: Thu, February 17, 2011 12:52:35 PMSubject: Re: Headaches

 

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired.  So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3,

just not at bed time.  Does that make any sense.  MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you. 

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

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[Guest guest]

Well, felt fine last night, but nausea was back this morning. I've had morning nausea since about October (no, it's not at all POSSIBLE that I am pregnant- haha). I think it might be medication.To: Neurosarcoidosis Sent: Fri, February 18, 2011 5:51:21 PMSubject: Re:

symptoms

I had the same for about a week, finally went to the Doctor, and he ordered an ultrasound of my gallbladder and liver for the next day, well I had such a bad night, that I called and canceled, and started feeling better that day, now I feel fine, I never got the ultrasound, figure it was just the flu:) so hopefully you'll feel better in a day or so, if not you should see your doctor.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

For the past few days I have been suffering from these symptoms; severe nausea, chills, occasional runny nose, night sweats, and some sleepiness. I would think it was the flu, but it comes on in the morning, gets better in the afternoon, comes back on in the evening, and is better again by bedtime. I am befuddled!

To: Neurosarcoidosis

Sent: Thu, February 17, 2011 12:52:35 PMSubject: Re: Headaches

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired. So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3,

just not at bed time. Does that make any sense. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

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always stay connected to friends.

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[Guest guest]

Did you start on any new meds?  Sometimes the combination of meds can make you feel ill, do you take at night or the am.  I found that meds that made me nausea in the am, I could take at night and be ok, just a thought?

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Well, felt fine last night, but nausea was back this morning.  I've had morning nausea since about October (no, it's not at all POSSIBLE that I am pregnant- haha).  I think it might be medication.

To: Neurosarcoidosis

Sent: Fri, February 18, 2011 5:51:21 PMSubject: Re:

symptoms

 

I had the same for about a week, finally went to the Doctor, and  he ordered an ultrasound of my gallbladder and liver for the next day, well I had such a bad night, that I called and canceled, and started feeling better that day, now I feel fine, I never got the ultrasound, figure it was just the flu:)  so hopefully you'll feel better in a day or so, if not you should see your doctor.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

For the past few days I have been suffering from these symptoms; severe nausea, chills, occasional runny nose, night sweats, and some sleepiness.  I would think it was the flu, but it comes on in the morning, gets better in the afternoon, comes back on in the evening, and is better again by bedtime.  I am befuddled! 

To: Neurosarcoidosis

Sent: Thu, February 17, 2011 12:52:35 PMSubject: Re: Headaches

 

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired.  So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3,

just not at bed time.  Does that make any sense.  MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you. 

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

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[Guest guest]

By some chance have you lowered your Pred, or do you even take pred?

To: Neurosarcoidosis Sent: Fri, February 18, 2011 12:04:11 PMSubject: symptoms

For the past few days I have been suffering from these symptoms; severe nausea, chills, occasional runny nose, night sweats, and some sleepiness. I would think it was the flu, but it comes on in the morning, gets better in the afternoon, comes back on in the evening, and is better again by bedtime. I am befuddled!

To: Neurosarcoidosis Sent: Thu, February 17, 2011 12:52:35 PMSubject: Re: Headaches

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired. So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3, just not at bed time. Does that make any sense. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New SymptomFirst your not Complaining, that's what we are here for to help you. I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too. Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok, Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb

feeling comes and goes by the min. it's really strange, but most of my symptoms are. Please always feel free to ask questions. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Connie, I am no longer on Pred. I only get IV solu medrol when I need a pred boost, as I don't do well with the oral pills anymore, so for 3 days I go in and get a dose and that gives me temporary boost

That happens about 3-4 times a year, depending on what's going on in my life. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

By some chance have you lowered your Pred, or do you even take pred?

To: Neurosarcoidosis

Sent: Fri, February 18, 2011 12:04:11 PMSubject: symptoms

 

For the past few days I have been suffering from these symptoms; severe nausea, chills, occasional runny nose, night sweats, and some sleepiness.  I would think it was the flu, but it comes on in the morning, gets better in the afternoon, comes back on in the evening, and is better again by bedtime.  I am befuddled! 

To: Neurosarcoidosis

Sent: Thu, February 17, 2011 12:52:35 PMSubject: Re: Headaches 

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired.  So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3,

just not at bed time.  Does that make any sense.  MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New SymptomFirst your not Complaining, that's what we are here for to help you.  I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok, Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb

feeling comes and goes by the min. it's really strange, but most of my symptoms are. Please always feel free to ask questions. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

I did start a different cholesteral med recently. I was allergic to the last one (I got a bad rash in my mouth). I do take it before bed. Maybe I'm allergic to this one?To: Neurosarcoidosis Sent: Sat, February 19, 2011 8:07:59 PMSubject: Re:

symptoms

Did you start on any new meds? Sometimes the combination of meds can make you feel ill, do you take at night or the am. I found that meds that made me nausea in the am, I could take at night and be ok, just a thought?

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Well, felt fine last night, but nausea was back this morning. I've had morning nausea since about October (no, it's not at all POSSIBLE that I am pregnant- haha). I think it might be medication.

To: Neurosarcoidosis

Sent: Fri, February 18, 2011 5:51:21 PMSubject: Re:

symptoms

I had the same for about a week, finally went to the Doctor, and he ordered an ultrasound of my gallbladder and liver for the next day, well I had such a bad night, that I called and canceled, and started feeling better that day, now I feel fine, I never got the ultrasound, figure it was just the flu:) so hopefully you'll feel better in a day or so, if not you should see your doctor.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

For the past few days I have been suffering from these symptoms; severe nausea, chills, occasional runny nose, night sweats, and some sleepiness. I would think it was the flu, but it comes on in the morning, gets better in the afternoon, comes back on in the evening, and is better again by bedtime. I am befuddled!

To: Neurosarcoidosis

Sent: Thu, February 17, 2011 12:52:35 PMSubject: Re: Headaches

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired. So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3,

just not at bed time. Does that make any sense. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

No, I don't take Prednisone. I have NASH and cirrhosis (from all the chemo and meds) so I can't take it anymore. I currently take Imuran for the Sarc and several other pain meds for the Neuralgia. I guess it might be a meds interaction problem since I started the new cholesteral medication. That's the only thing that has changed lately.To:

Neurosarcoidosis Sent: Sat, February 19, 2011 11:22:51 PMSubject: Re: symptoms

By some chance have you lowered your Pred, or do you even take pred?

To: Neurosarcoidosis Sent: Fri, February 18, 2011 12:04:11 PMSubject: symptoms

For the past few days I have been suffering from these symptoms; severe nausea, chills, occasional runny nose, night sweats, and some sleepiness. I would think it was the flu, but it comes on in the morning, gets better in the afternoon, comes back on in the evening, and is better again by bedtime. I am befuddled!

To: Neurosarcoidosis Sent: Thu, February 17, 2011 12:52:35 PMSubject: Re: Headaches

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired. So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3, just not at bed time. Does that make any sense. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New SymptomFirst your not Complaining, that's what we are here for to help you. I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too. Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok, Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb

feeling comes and goes by the min. it's really strange, but most of my symptoms are. Please always feel free to ask questions. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

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I would let your doctor know, if the nausea started about the same time as the new medication, it could be related.  Take it with some food, maybe even a cracker.  let me know how it goes. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I did start a different cholesteral med recently.  I was allergic to the last one (I got a bad rash in my mouth). I do take it before bed. Maybe I'm allergic to this one?

To: Neurosarcoidosis

Sent: Sat, February 19, 2011 8:07:59 PMSubject: Re:

symptoms

 

Did you start on any new meds?  Sometimes the combination of meds can make you feel ill, do you take at night or the am.  I found that meds that made me nausea in the am, I could take at night and be ok, just a thought?

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Well, felt fine last night, but nausea was back this morning.  I've had morning nausea since about October (no, it's not at all POSSIBLE that I am pregnant- haha).  I think it might be medication.

To: Neurosarcoidosis

Sent: Fri, February 18, 2011 5:51:21 PMSubject: Re:

symptoms

 

I had the same for about a week, finally went to the Doctor, and  he ordered an ultrasound of my gallbladder and liver for the next day, well I had such a bad night, that I called and canceled, and started feeling better that day, now I feel fine, I never got the ultrasound, figure it was just the flu:)  so hopefully you'll feel better in a day or so, if not you should see your doctor.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

For the past few days I have been suffering from these symptoms; severe nausea, chills, occasional runny nose, night sweats, and some sleepiness.  I would think it was the flu, but it comes on in the morning, gets better in the afternoon, comes back on in the evening, and is better again by bedtime.  I am befuddled! 

To: Neurosarcoidosis

Sent: Thu, February 17, 2011 12:52:35 PMSubject: Re: Headaches

 

This is what my problem is, I'm on Lyrica, and when I would take it at night I would have trouble sleeping, so I started not taking it at night and I sleep better, and stay asleep, but the trade off is waking up in pain, usually Left sided head pain, nerve pain, but if I take the Lyrica, then I have trouble with sleep, and then I don't feel good all day because I'm tired.  So now when I get up I take 2 Advils and it goes away, I also take my Lyrica right when I wake up, and again around 3,

just not at bed time.  Does that make any sense.  MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

If you keep track of them for a few days. Write it down, where they start, if they stay in same place or move (with and without pain meds) ie if it's in the back of your head but after you take a motrin it moves to the front or if you take codeine and it moves to the side. Be as specific as you can be and let me know. This is what I do for a living and if I can help it would be my pleasure

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you. 

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

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[Guest guest]

I could go on about Cholesterol meds for an hour if you want. They not only don't work but they cause so many problems. (They will lower your over all number but will not do anything to correct the issue) there are many things that are natural that work and are much cheaper

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

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in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Yes this is so true, but I tried the Vit E and I would get like sticky hot flashes, it was strange, when I stopped taking the Vit E they stopped.  I do eat a handful of almonds a day.  but my number has never changed, so I'm not going to worry about it. 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I could go on about Cholesterol meds for an hour if you want. They not only don't work but they cause so many problems. (They will lower your over all number but will not do anything to correct the issue) there are many things that are natural that work and are much cheaper

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you. 

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad.  I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)  

 

 

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.   

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Could you please give me some names of the natural products if you have them?To: Neurosarcoidosis Sent: Mon, February 21, 2011 2:33:11 PMSubject: Re: symptoms

I could go on about Cholesterol meds for an hour if you want. They not only don't work but they cause so many problems. (They will lower your over all number but will not do anything to correct the issue) there are many things that are natural that work and are much cheaper

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

I'm already on vitamin E and have been for years. Maybe that's what is interacting with the Cholesterol med.To: Neurosarcoidosis Sent: Mon, February 21, 2011 3:22:21 PMSubject: Re: symptoms

Yes this is so true, but I tried the Vit E and I would get like sticky hot flashes, it was strange, when I stopped taking the Vit E they stopped. I do eat a handful of almonds a day. but my number has never changed, so I'm not going to worry about it.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I could go on about Cholesterol meds for an hour if you want. They not only don't work but they cause so many problems. (They will lower your over all number but will not do anything to correct the issue) there are many things that are natural that work and are much cheaper

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Plant Sterols are the best to use if just dealing with High Cholesterol (I use a Metagenics product call Metasisterol 2.0) if very high or also have high Triglycerides

then I add another Metagenics product called Lipotain. There is a company I've used before that deals with most products that I prescribe and I think they drop ship directly to patient's house. If interested I can look it up for you. As per your next message I've never seen a pill interaction between cholesterol meds and Vitamin D but I'd need exact drugs to be 100% sure.

A few things about supplements. They are not all equal, you get what you pay for. Don't Buy Cheap Vitamins, I can't tell you how many vitamins I've seen undigested in x-rays. If you buy a generic or cheap brand you will only be losing money because you will not be getting a fraction of what you should. The cheaper the vitamin the cheaper the fillers. I would never send someone to GNC. The supplements I carry i my office are all top of the line and I only add a minimal to it to make them affordable to everyone.

Let me know what other questions I can answer and if I answered all of yours.

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

I may get smacked, but I agree. The hospital told a friend of mine a year ago that the cholesteral meds they gave her husband is what caused the liver failure that took him from her. They reek havoc on the liver.

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

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[Guest guest]

Just curious, but why would you get smacked for telling the truth? So many people are afraid to question their Doctor's or the meds that they put them on. The people who started this board know so much more then their Doctors because they question and questioned their Doctor's who they figured out that their Doctor's know squat about Sarc. It's ok to say NO and to ask for alternatives and if they can;t look yourselves

Re: symptoms

I may get smacked, but I agree. The hospital told a friend of mine a year ago that the cholesteral meds they gave her husband is what caused the liver failure that took him from her. They reek havoc on the liver.

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Thanks. I'll write those names down. I have a good health food store close to me that would sell good quality supplements. I should probably buy my vitamin E there as well, but I end up buying it at Sam's since it comes in such large quantities. I figured it wouldn't have any fillers since it is in a gel, but I guess I'm wrong.To:

Neurosarcoidosis Sent: Tue, February 22, 2011 11:51:28 AMSubject: Re: symptoms

Plant Sterols are the best to use if just dealing with High Cholesterol (I use a Metagenics product call Metasisterol 2.0) if very high or also have high Triglycerides

then I add another Metagenics product called Lipotain. There is a company I've used before that deals with most products that I prescribe and I think they drop ship directly to patient's house. If interested I can look it up for you. As per your next message I've never seen a pill interaction between cholesterol meds and Vitamin D but I'd need exact drugs to be 100% sure.

A few things about supplements. They are not all equal, you get what you pay for. Don't Buy Cheap Vitamins, I can't tell you how many vitamins I've seen undigested in x-rays. If you buy a generic or cheap brand you will only be losing money because you will not be getting a fraction of what you should. The cheaper the vitamin the cheaper the fillers. I would never send someone to GNC. The supplements I carry i my office are all top of the line and I only add a minimal to it to make them affordable to everyone.

Let me know what other questions I can answer and if I answered all of yours.

Re: Re: New Symptom

First your not Complaining, that's what we are here for to help you.

I don't have a shunt, but I do have all the same symptoms you are describing, on the left side too.

Of course it would probably still be a good idea to get the shunt check out to make sure it's working ok,

Just yesterday my face hurt so bad, I spent most of the day lying my face left side on a

heating pad. I have a new symptom, the top part of my lip, left side only feels numb and thick just like when the Dentist numbs you up, it works fine, but the numb feeling comes and goes by the min. it's really strange, but most of my symptoms are.

Please always feel free to ask questions.

Marla

Just one day at a time, That's all God ask of

us. for there never really is a tomorrow, as that too

is just today:)

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and

always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels

in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

And I have NASH and cirrhosis to boot. I stopped taking the Prevastatin night before last, and yesterday was nausea free, but the chills remain. Must have been separate symptoms.To: Neurosarcoidosis Sent: Tue, February 22, 2011 11:10:02 PMSubject: Re:

symptoms

I may get smacked, but I agree. The hospital told a friend of mine a year ago that the cholesteral meds they gave her husband is what caused the liver failure that took him from her. They reek havoc on the liver.

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit.

[Guest guest]

Trust me I was raised to be a peacemaker, and some people are not comfortable with a differing opinion. I wouldn't like to think I offended my friends. But on the other hand, no worries my doctors know that cholesteral medicine is not up for discussion. My PCP asked me once why I wouldn't take it, I told him and he said "I wouldn't take it either". I have learned like everyone on this site, if you don't watch out for yourself medically you will get nailed.

To: Neurosarcoidosis Sent: Wed, February 23, 2011 8:23:01 AMSubject: Re: symptoms

Just curious, but why would you get smacked for telling the truth? So many people are afraid to question their Doctor's or the meds that they put them on. The people who started this board know so much more then their Doctors because they question and questioned their Doctor's who they figured out that their Doctor's know squat about Sarc. It's ok to say NO and to ask for alternatives and if they can;t look yourselves

Re: symptoms

I may get smacked, but I agree. The hospital told a friend of mine a year ago that the cholesteral meds they gave her husband is what caused the liver failure that took him from her. They reek havoc on the liver.

I have a new symptom and I have not been feeling well for a while. Wondering if this is sarc or the vp shunt. I am experiencing extremely bad headaches on the left side of my head. face, nose and eye (my shunt is on the right side). At times I get nautious and it hurts so bad that I cannot even get comfortable laying down. The headache never seems to go away and gets worse when I get excited or upset. What next man?! I am so tired of complaining and not feeling well.

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit.