seizures

[Guest guest]

has anyone tried phyllium for seizures on their children? if so

please let me know how your child reacted to it. also do any of your

mito kids have blood disorders and liver problems . we went to ku on

tues. and logans drs are doing blood workups on his liver saying he

is showing sighns of posible liver damage. his body also does not

make iron an dhe is on heavy doses of iron.logan's brain is showing

more signs of atrophy and his basil ganglea dysfunction is getting

worse. is this common with leighs disease ? the drs said we would be

lucky if we make it another year. he just turned 2 on th e21st of

june. i would appreciate any input. thank you

jennie mom of brandy,ashley austin and logan

[Guest guest]

We have no experience with seizures, sorry. Grace, non specific mito, does have liver disease. We actually knew about the liver disease before the mito. From what Dr. Cohen has told us, liver disease is pretty rare with mito but it does happen. Until Grace started the cocktail her liver was worsening as the days passed. Since being on the cocktail (Carnitor especially) her liver enzymes have dropped to almost normal, but it did take awhile. She will always have permanant damage from before, but we hope that is all. She now has to be very carefull on OTC meds, as well as prescription meds. We make sure everything she takes has to be metabolized by the kidneys, not the liver. She does also take Actigal, wich works almost like a Coumadin for the liver. Actigal thins our the bile in the liver, just making everything pass through it better. If you have any more questions please feel free to ask. I have found there is not a whole lot of info online about liver disease when associated to mito. Best wishes.

[Guest guest]

thanks for the input I appreciate it so much . jenniealbregra@... wrote:

We have no experience with seizures, sorry. Grace, non specific mito, does have liver disease. We actually knew about the liver disease before the mito. From what Dr. Cohen has told us, liver disease is pretty rare with mito but it does happen. Until Grace started the cocktail her liver was worsening as the days passed. Since being on the cocktail (Carnitor especially) her liver enzymes have dropped to almost normal, but it did take awhile. She will always have permanant damage from before, but we hope that is all. She now has to be very carefull on OTC meds, as well as prescription meds. We make sure everything she takes has to be metabolized by the kidneys, not the liver. She does also take Actigal, wich works almost like a Coumadin for the liver. Actigal thins our the bile in the liver, just making everything pass through it better. If you have any more questions please feel free to ask. I have found

there is not a whole lot of info online about liver disease when associated to mito. Best wishes.

Please contact mito-owner with any problems or questions.

[Guest guest]

Jennie,

My daughter morgan has severe anemia not d/t iron. My youngest

Molly has iron def. anemia (not really anemic yet she is on a multi

vit with iron.) She is due for another count next week. has a

fatty liver with some cirrhosis. It is not uncommon to have liver

damage. That is where her bad mito showed up-not in the muscle or

skin like most people.

No seizures here-knock on wood, Dawn

[Guest guest]

Hi Dawn I am glad for the info thanks. They found Logans in his muscles,mito, but I didn't know if this was a part of it or just a side effect of the meds. Thank you an dyeah no seizures over your way. I am glad you let me know thanks Jenthefourofus03 wrote:

Jennie, My daughter morgan has severe anemia not d/t iron. My youngest Molly has iron def. anemia (not really anemic yet she is on a multi vit with iron.) She is due for another count next week. has a fatty liver with some cirrhosis. It is not uncommon to have liver damage. That is where her bad mito showed up-not in the muscle or skin like most people. No seizures here-knock on wood, Dawn Please contact mito-owner with any problems or questions.

[Guest guest]

I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day.

I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla

Yesterday was my third day on a half mg taper off Prednisone. I now

take 11 and a half mg every other day. For the first time I developed

seizures. I also began to suffer from the usual cranial neuropathy

symptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,

face and ear. Anybody else get these symptoms? Don't really understand

how I can be numb and in pain at the same time? I am going in to see

the GP today, but don't have much hope of any real info. Went back up

to my previous dose of Pred. and began taking Tegretol again (hello

fuzzy brain). Things are much better this morning but I am SO

frustrated. Taking Remicade was supposed to stop these flare-ups. Why

take Remicade and possibly suffer the serious side-effects if it isn't

working? Grrrrr. -

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day.

I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla

Yesterday was my third day on a half mg taper off Prednisone. I now

take 11 and a half mg every other day. For the first time I developed

seizures. I also began to suffer from the usual cranial neuropathy

symptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,

face and ear. Anybody else get these symptoms? Don't really understand

how I can be numb and in pain at the same time? I am going in to see

the GP today, but don't have much hope of any real info. Went back up

to my previous dose of Pred. and began taking Tegretol again (hello

fuzzy brain). Things are much better this morning but I am SO

frustrated. Taking Remicade was supposed to stop these flare-ups. Why

take Remicade and possibly suffer the serious side-effects if it isn't

working? Grrrrr. -

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

I've been on Remicade for over a year now. If it was going to work as

a steroid-sparing agent it should have by now. Quite discouraging to

have a flare in spite of being on it. And I don't know what to make of

the seizures. I am going to look into it this morning. -

[Guest guest]

I've been on Remicade for over a year now. If it was going to work as

a steroid-sparing agent it should have by now. Quite discouraging to

have a flare in spite of being on it. And I don't know what to make of

the seizures. I am going to look into it this morning. -

[Guest guest]

Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in

with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in

agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those

same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Yesterday was my third day on a half mg

taper off Prednisone. I now take 11 and a half mg every other day. For the first time I developed seizures. I also began to suffer from the usual cranial neuropathy symptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums, face and ear. Anybody else get these symptoms? Don't really understand how I can be numb and in pain at the same time? I am going in to see the GP today, but don't have much hope of any real info. Went back up to my previous dose of Pred. and began taking Tegretol again (hello fuzzy brain). Things are much better this morning but I am SO frustrated. Taking Remicade was supposed to stop these flare-ups. Why take Remicade and possibly suffer the serious side-effects if it isn't working? Grrrrr. - -- Marla BramerIndependent

Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a

future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in

with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in

agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those

same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Yesterday was my third day on a half mg

taper off Prednisone. I now take 11 and a half mg every other day. For the first time I developed seizures. I also began to suffer from the usual cranial neuropathy symptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums, face and ear. Anybody else get these symptoms? Don't really understand how I can be numb and in pain at the same time? I am going in to see the GP today, but don't have much hope of any real info. Went back up to my previous dose of Pred. and began taking Tegretol again (hello fuzzy brain). Things are much better this morning but I am SO frustrated. Taking Remicade was supposed to stop these flare-ups. Why take Remicade and possibly suffer the serious side-effects if it isn't working? Grrrrr. - -- Marla BramerIndependent

Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a

future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Wendi, one of the things I needed to do with the Remicade is to get the infusions closer together (every 28 days) and increase the amount of Remicade I get-- I'm at the max of 10mg/kg dose-- along with Methotrexate once a week and Plaquenil daily.

Do they have you on MTX? What the MTX does is prevent you from building a tolerance to the Remicade-- that is creating antibodies against the Remicade-- so it is important to coordinate this. You need also to take the Folic Acid to keep from getting Pernicious Anemia. (This is true whether it is Remicade, MTX, Imuran or whatever-- they all blow out the B vitamins).

What I've found is that the Remicade has helped my brain fog immenselly, (sp) and it has helped with the severe arthritis pain in my joints and spine and it's taken care of 90% of tthat horrid inside the bone pain.

I also don't have as much break thru lymph pain.

The challenge for me is that my lungs have become so fibrosed-- (scarred) that I'm not able to get enough blood to my heart--so now the heart is having to overwork itself, and I've developed pulmonary hypertension.

If you cna't take MTX-- then they can use Imuran or Arava in conjunction with the Remicade-- so that you can get off the pred.

Take care,

Tracie

NS Co-owner/moderator

I've been on Remicade for over a year now. If it was going to work asa steroid-sparing agent it should have by now. Quite discouraging tohave a flare in spite of being on it. And I don't know what to make ofthe seizures. I am going to look into it this morning. - Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

Wendi, one of the things I needed to do with the Remicade is to get the infusions closer together (every 28 days) and increase the amount of Remicade I get-- I'm at the max of 10mg/kg dose-- along with Methotrexate once a week and Plaquenil daily.

Do they have you on MTX? What the MTX does is prevent you from building a tolerance to the Remicade-- that is creating antibodies against the Remicade-- so it is important to coordinate this. You need also to take the Folic Acid to keep from getting Pernicious Anemia. (This is true whether it is Remicade, MTX, Imuran or whatever-- they all blow out the B vitamins).

What I've found is that the Remicade has helped my brain fog immenselly, (sp) and it has helped with the severe arthritis pain in my joints and spine and it's taken care of 90% of tthat horrid inside the bone pain.

I also don't have as much break thru lymph pain.

The challenge for me is that my lungs have become so fibrosed-- (scarred) that I'm not able to get enough blood to my heart--so now the heart is having to overwork itself, and I've developed pulmonary hypertension.

If you cna't take MTX-- then they can use Imuran or Arava in conjunction with the Remicade-- so that you can get off the pred.

Take care,

Tracie

NS Co-owner/moderator

I've been on Remicade for over a year now. If it was going to work asa steroid-sparing agent it should have by now. Quite discouraging tohave a flare in spite of being on it. And I don't know what to make ofthe seizures. I am going to look into it this morning. - Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

, are you on other drugs with the Remicade? I'm sad to hear it is not working for you, I wonder if they will ever find a drug for " us " , chin up, and know your in my prayers, Marla

I've been on Remicade for over a year now. If it was going to work as

a steroid-sparing agent it should have by now. Quite discouraging to

have a flare in spite of being on it. And I don't know what to make of

the seizures. I am going to look into it this morning. -

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

, are you on other drugs with the Remicade? I'm sad to hear it is not working for you, I wonder if they will ever find a drug for " us " , chin up, and know your in my prayers, Marla

I've been on Remicade for over a year now. If it was going to work as

a steroid-sparing agent it should have by now. Quite discouraging to

have a flare in spite of being on it. And I don't know what to make of

the seizures. I am going to look into it this morning. -

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

,

Have they put you on anything for it?

I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live.. Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

,

Have they put you on anything for it?

I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live.. Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

Tracie, I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live..

Hugs,

Re: Re: seizures

Wendi, one of the things I needed to do with the Remicade is to get the infusions closer together (every 28 days) and increase the amount of Remicade I get-- I'm at the max of 10mg/kg dose-- along with Methotrexate once a week and Plaquenil daily.

Do they have you on MTX? What the MTX does is prevent you from building a tolerance to the Remicade-- that is creating antibodies against the Remicade-- so it is important to coordinate this. You need also to take the Folic Acid to keep from getting Pernicious Anemia. (This is true whether it is Remicade, MTX, Imuran or whatever-- they all blow out the B vitamins).

What I've found is that the Remicade has helped my brain fog immenselly, (sp) and it has helped with the severe arthritis pain in my joints and spine and it's taken care of 90% of tthat horrid inside the bone pain.

I also don't have as much break thru lymph pain.

The challenge for me is that my lungs have become so fibrosed-- (scarred) that I'm not able to get enough blood to my heart--so now the heart is having to overwork itself, and I've developed pulmonary hypertension.

If you cna't take MTX-- then they can use Imuran or Arava in conjunction with the Remicade-- so that you can get off the pred.

Take care,

Tracie

NS Co-owner/moderator

In a message dated 2/28/2008 9:40:53 A.M. Pacific Standard Time, wendy_cidp (AT) yahoo (DOT) ca writes:

I've been on Remicade for over a year now. If it was going to work asa steroid-sparing agent it should have by now. Quite discouraging tohave a flare in spite of being on it. And I don't know what to make ofthe seizures. I am going to look into it this morning. -

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM

[Guest guest]

Tracie, I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live..

Hugs,

Re: Re: seizures

Wendi, one of the things I needed to do with the Remicade is to get the infusions closer together (every 28 days) and increase the amount of Remicade I get-- I'm at the max of 10mg/kg dose-- along with Methotrexate once a week and Plaquenil daily.

Do they have you on MTX? What the MTX does is prevent you from building a tolerance to the Remicade-- that is creating antibodies against the Remicade-- so it is important to coordinate this. You need also to take the Folic Acid to keep from getting Pernicious Anemia. (This is true whether it is Remicade, MTX, Imuran or whatever-- they all blow out the B vitamins).

What I've found is that the Remicade has helped my brain fog immenselly, (sp) and it has helped with the severe arthritis pain in my joints and spine and it's taken care of 90% of tthat horrid inside the bone pain.

I also don't have as much break thru lymph pain.

The challenge for me is that my lungs have become so fibrosed-- (scarred) that I'm not able to get enough blood to my heart--so now the heart is having to overwork itself, and I've developed pulmonary hypertension.

If you cna't take MTX-- then they can use Imuran or Arava in conjunction with the Remicade-- so that you can get off the pred.

Take care,

Tracie

NS Co-owner/moderator

In a message dated 2/28/2008 9:40:53 A.M. Pacific Standard Time, wendy_cidp (AT) yahoo (DOT) ca writes:

I've been on Remicade for over a year now. If it was going to work asa steroid-sparing agent it should have by now. Quite discouraging tohave a flare in spite of being on it. And I don't know what to make ofthe seizures. I am going to look into it this morning. -

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM

[Guest guest]

I've been on lasix for years, and I take 3 blood pressure pills.. they increased the lasix from 80 to 160 omg, I couldn't tolerate that.. my kidney's which are quit frail just couldn't stand that.. I go into renal failure really easy.. and that would shove me over the edge.. I start with the most horrilbe jerking.. its painful as in its a shock type sensation.. and it appears like someone with turretts's syndrome.. I don't like/want it.. so nothing different as of now..

Then again, I have Vanderbilt doctors.. I may seek another opinion, if you think I should

Re: Re: seizures

,

Have they put you on anything for it?

In a message dated 2/28/2008 4:27:41 P.M. Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes:

I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live..

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM

[Guest guest]

I've been on lasix for years, and I take 3 blood pressure pills.. they increased the lasix from 80 to 160 omg, I couldn't tolerate that.. my kidney's which are quit frail just couldn't stand that.. I go into renal failure really easy.. and that would shove me over the edge.. I start with the most horrilbe jerking.. its painful as in its a shock type sensation.. and it appears like someone with turretts's syndrome.. I don't like/want it.. so nothing different as of now..

Then again, I have Vanderbilt doctors.. I may seek another opinion, if you think I should

Re: Re: seizures

,

Have they put you on anything for it?

In a message dated 2/28/2008 4:27:41 P.M. Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes:

I was told a couple of weeks ago that I have pulmonary hypertension too.. they found it while doing a Cardiac Cath.. I was having that hard heart beat.. increase edema.. and shortness of breath.. What a life we live..

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM

[Guest guest]

I had something happen to me similar to this years ago, after I was dx with NS.. my jaw swelled up on the right side and I was in horrible pain.. my salivary gland had some how become inflammed.. I had to take massive pain meds too, but after a few days of antibiotics it slowly got better.. they never said if it was related to sarc or not, they just didn't know.. I have horrilbe dry mouth questionable sojergens syndrome.. still don't know if its sarc related or not.. They just don't seen to care..

Re: seizures

Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla

On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote:

Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

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No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM

[Guest guest]

I had something happen to me similar to this years ago, after I was dx with NS.. my jaw swelled up on the right side and I was in horrible pain.. my salivary gland had some how become inflammed.. I had to take massive pain meds too, but after a few days of antibiotics it slowly got better.. they never said if it was related to sarc or not, they just didn't know.. I have horrilbe dry mouth questionable sojergens syndrome.. still don't know if its sarc related or not.. They just don't seen to care..

Re: seizures

Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla

On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote:

Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

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No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM

[Guest guest]

, the thing that puzzled them the most is that this happened MIDWAY through a big dose of antibiotics. They thought if it was bacterial the antibiotics would have killed it out. My dentist and GP were stumped and thinking it was probably a sarc (or something else autoimmune) flareup...duh?! The pain has almost completely left but the gums were still tender enough to have to be locally numbed for the cleaning. OWeeee....lol. The valium didn't hurt either. I think the dry mouth had a LOT to do with the pain and I think the sarc had a lot to do with the dry mouth. I wouldn't wish that pain on anybody...oh wait...maybe my ENT doc...lol. I have had salivary problems for years and they still can't connect the dots right in front of their eyes. I'm not up to saying my docs don't care but they certainly

could do a bit more research, hey?.....topdat@... wrote: I had something happen to me similar to this years ago, after I was dx with NS.. my jaw swelled up on the right side and I was in horrible pain.. my salivary gland had some how become inflammed.. I had to take massive pain meds too, but after a few days of antibiotics it slowly got better.. they never said if it was related to sarc or not, they just didn't know.. I have horrilbe dry mouth questionable sojergens syndrome.. still

don't know if its sarc related or not.. They just don't seen to care.. Re: seizures Marla and , Just yesterday I posted to Tracie

about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never

knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow

for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed

I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my

gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Looking for last minute shopping deals? Find them

fast with Yahoo! Search. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

, the thing that puzzled them the most is that this happened MIDWAY through a big dose of antibiotics. They thought if it was bacterial the antibiotics would have killed it out. My dentist and GP were stumped and thinking it was probably a sarc (or something else autoimmune) flareup...duh?! The pain has almost completely left but the gums were still tender enough to have to be locally numbed for the cleaning. OWeeee....lol. The valium didn't hurt either. I think the dry mouth had a LOT to do with the pain and I think the sarc had a lot to do with the dry mouth. I wouldn't wish that pain on anybody...oh wait...maybe my ENT doc...lol. I have had salivary problems for years and they still can't connect the dots right in front of their eyes. I'm not up to saying my docs don't care but they certainly

could do a bit more research, hey?.....topdat@... wrote: I had something happen to me similar to this years ago, after I was dx with NS.. my jaw swelled up on the right side and I was in horrible pain.. my salivary gland had some how become inflammed.. I had to take massive pain meds too, but after a few days of antibiotics it slowly got better.. they never said if it was related to sarc or not, they just didn't know.. I have horrilbe dry mouth questionable sojergens syndrome.. still

don't know if its sarc related or not.. They just don't seen to care.. Re: seizures Marla and , Just yesterday I posted to Tracie

about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never

knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow

for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed

I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my

gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Looking for last minute shopping deals? Find them

fast with Yahoo! Search. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1302 - Release Date: 2/27/2008 4:34 PM 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

Looking for last minute shopping deals? Find them fast with Yahoo! Search.