new to group

[Guest guest]

hi pat, welcome to the group! the usual chat times are thursday

evening and sunday evening from 6 to 8 pm pacific time. i know what

you mean about the obesityhelp.com chat room. too busy and everyone

is having other surgeries. sometimes if i have a yen to chat, i

email the ds group and ask in the subject line if anyone wants to

chat. then i pop into the chat room and wait to see if anyone shows

up. sometimes it takes a little bit, but usually someone comes in to

talk.

my surgery is being moved to mid june instead of the original date of

may 15th. couldn't get all my testing done on time, and then the big

holiday weekend would make travel a mess. but it will all work out

for the best. good luck with your surgery.

mary y st. louis

> Hi, my name is pat, male, 51 years. I had a previous VBG in 1988

and

> started having problems and had it reversed last year but could't

> keep the weight off. I am now approved for DS and scheduled

6/12/01.

> I have noticed that there is never anyone in the chatroom on the DS

> sites. Obesityhelp.com is very busy but not too many DS's there. I

> live in WA. Dr. Heap is my doc. Will be looking forward to

> communicating with everyone.

>

> Thanks,

> Pat

[Guest guest]

Welcome to the group. This is a wonderful place to turn to for support and information. Everybody here has helped me so much with questions, concerns, ect. My daughter was just diagnosed this summer, so I am new to this also. I am not too good on clinical side of the disease, diagnoses, etc., but you will get a lot of info from others who are great at this. My daughter Grace also lives with this disease, nonspecific mito. What state do you live in? My daughter sees Dr. Cohen at the Cleveland Clinic, he is very good. I believe there are a number of families in the group, whose children are on the ketogenic diet. A lot of the kids with this disease also have g tubes, my daughter included. It is a wonderful thing since almost all of them have a lot of eating problems, and on so much medicine. A great website to check out is the UMDF site www.umdf.org it is the mitochondrial disease website. It has a very good library for research. Another site to check out is the Muscular dystrophy site www.mdausa.com, If you scroll through the supported diseases you will find mitochondrial disease. Hope some of this is helpful.

[Guest guest]

Welcome to the group. This is a wonderful place to turn to for support and information. Everybody here has helped me so much with questions, concerns, ect. My daughter was just diagnosed this summer, so I am new to this also. I am not too good on clinical side of the disease, diagnoses, etc., but you will get a lot of info from others who are great at this. My daughter Grace also lives with this disease, nonspecific mito. What state do you live in? My daughter sees Dr. Cohen at the Cleveland Clinic, he is very good. I believe there are a number of families in the group, whose children are on the ketogenic diet. A lot of the kids with this disease also have g tubes, my daughter included. It is a wonderful thing since almost all of them have a lot of eating problems, and on so much medicine. A great website to check out is the UMDF site www.umdf.org it is the mitochondrial disease website. It has a very good library for research. Another site to check out is the Muscular dystrophy site www.mdausa.com, If you scroll through the supported diseases you will find mitochondrial disease. Hope some of this is helpful.

[Guest guest]

Welcome to the group. This is a wonderful place to turn to for support and information. Everybody here has helped me so much with questions, concerns, ect. My daughter was just diagnosed this summer, so I am new to this also. I am not too good on clinical side of the disease, diagnoses, etc., but you will get a lot of info from others who are great at this. My daughter Grace also lives with this disease, nonspecific mito. What state do you live in? My daughter sees Dr. Cohen at the Cleveland Clinic, he is very good. I believe there are a number of families in the group, whose children are on the ketogenic diet. A lot of the kids with this disease also have g tubes, my daughter included. It is a wonderful thing since almost all of them have a lot of eating problems, and on so much medicine. A great website to check out is the UMDF site www.umdf.org it is the mitochondrial disease website. It has a very good library for research. Another site to check out is the Muscular dystrophy site www.mdausa.com, If you scroll through the supported diseases you will find mitochondrial disease. Hope some of this is helpful.

[Guest guest]

WELCOME to our list! Sorry to hear of the recent diagnosis, but this is a group that can really help you with any issue you deal with. There is always someone else who has "been there and done that." What state do you live in? Tell us some more about your daughter as well and maybe we can help you pick a good doctor. I have a three and a half year old dealing with an unknown type of Mito with all its issues and vasculitis of the brain, a condition that narrows arteries and causes strokes and aneurisms (spelling?). We go to Mayo to see Dr. Whiteman (a great geneticist) and many other doctors there. If there is anything I can help you with let me know. Darla: mommy to Asenath New to group Hi,Our family is new to this group, our daughter andria was diagnosed w/ Mitochondrial disease in October. We our very confused and still have no answers from the doctors. The results stated something about Complex1 and 2 and long chain fatty oxidation. She has a history of infantile seizures and intractable seizures. She was placed on the Ketogenic diet in Nov. 02. Her seizures seemed somewhat better but her health declined and she now has a g-tube. She is still on the diet 2 mons later even though we were told the Keto diet was not good for her w/ the diagnosis. I think we are confused at this point about were to go or who to see. We have recently moved to a new state so we are starting all over and can't get any answers. We need some information or help understanding this diagnosis.Thank You,ph and Heidiparents of andria 4 years old Please contact mito-owner with any problems or questions.

[Guest guest]

WELCOME to our list! Sorry to hear of the recent diagnosis, but this is a group that can really help you with any issue you deal with. There is always someone else who has "been there and done that." What state do you live in? Tell us some more about your daughter as well and maybe we can help you pick a good doctor. I have a three and a half year old dealing with an unknown type of Mito with all its issues and vasculitis of the brain, a condition that narrows arteries and causes strokes and aneurisms (spelling?). We go to Mayo to see Dr. Whiteman (a great geneticist) and many other doctors there. If there is anything I can help you with let me know. Darla: mommy to Asenath New to group Hi,Our family is new to this group, our daughter andria was diagnosed w/ Mitochondrial disease in October. We our very confused and still have no answers from the doctors. The results stated something about Complex1 and 2 and long chain fatty oxidation. She has a history of infantile seizures and intractable seizures. She was placed on the Ketogenic diet in Nov. 02. Her seizures seemed somewhat better but her health declined and she now has a g-tube. She is still on the diet 2 mons later even though we were told the Keto diet was not good for her w/ the diagnosis. I think we are confused at this point about were to go or who to see. We have recently moved to a new state so we are starting all over and can't get any answers. We need some information or help understanding this diagnosis.Thank You,ph and Heidiparents of andria 4 years old Please contact mito-owner with any problems or questions.

[Guest guest]

WELCOME to our list! Sorry to hear of the recent diagnosis, but this is a group that can really help you with any issue you deal with. There is always someone else who has "been there and done that." What state do you live in? Tell us some more about your daughter as well and maybe we can help you pick a good doctor. I have a three and a half year old dealing with an unknown type of Mito with all its issues and vasculitis of the brain, a condition that narrows arteries and causes strokes and aneurisms (spelling?). We go to Mayo to see Dr. Whiteman (a great geneticist) and many other doctors there. If there is anything I can help you with let me know. Darla: mommy to Asenath New to group Hi,Our family is new to this group, our daughter andria was diagnosed w/ Mitochondrial disease in October. We our very confused and still have no answers from the doctors. The results stated something about Complex1 and 2 and long chain fatty oxidation. She has a history of infantile seizures and intractable seizures. She was placed on the Ketogenic diet in Nov. 02. Her seizures seemed somewhat better but her health declined and she now has a g-tube. She is still on the diet 2 mons later even though we were told the Keto diet was not good for her w/ the diagnosis. I think we are confused at this point about were to go or who to see. We have recently moved to a new state so we are starting all over and can't get any answers. We need some information or help understanding this diagnosis.Thank You,ph and Heidiparents of andria 4 years old Please contact mito-owner with any problems or questions.

[Guest guest]

,

We live in Florida. We lived in Rhode Island and she received all her treatment in Boston.........we moved in September amd are starting all over. I called Dr Cohen's office and spoke w/ Fran I am waiting for the office to get back to me w/ an appointment. We flew to Boston in October and got these results and nothing has really been explained to us. Thank you for the websites. We were told the Ketogenic Diet is harmful because she can't metabolize long chain fatty acids but she is still on it............just changed to MCT oil and having more seizures. We hope we can find someone who can look at her biopsies and give us more info we are up in the air. How old is your daughter?

Heidi

andria 4 years old

[Guest guest]

,

We live in Florida. We lived in Rhode Island and she received all her treatment in Boston.........we moved in September amd are starting all over. I called Dr Cohen's office and spoke w/ Fran I am waiting for the office to get back to me w/ an appointment. We flew to Boston in October and got these results and nothing has really been explained to us. Thank you for the websites. We were told the Ketogenic Diet is harmful because she can't metabolize long chain fatty acids but she is still on it............just changed to MCT oil and having more seizures. We hope we can find someone who can look at her biopsies and give us more info we are up in the air. How old is your daughter?

Heidi

andria 4 years old

[Guest guest]

,

We live in Florida. We lived in Rhode Island and she received all her treatment in Boston.........we moved in September amd are starting all over. I called Dr Cohen's office and spoke w/ Fran I am waiting for the office to get back to me w/ an appointment. We flew to Boston in October and got these results and nothing has really been explained to us. Thank you for the websites. We were told the Ketogenic Diet is harmful because she can't metabolize long chain fatty acids but she is still on it............just changed to MCT oil and having more seizures. We hope we can find someone who can look at her biopsies and give us more info we are up in the air. How old is your daughter?

Heidi

andria 4 years old

[Guest guest]

Darla,

We moved to Florida in September from Rhode Island. Looking at a summary from the doctor dictation we have only had the one appointment when we received results it says: Muscle ETC enzyme testing showed partial deficiency of complex1 (latter part) and complex 2, lipid myopathy by oil red O staining, in muscle tissue there was significant elevation of long chain acylcarnitines...C14, C16, C16:1, C18, C18:1, and C18:2. We are still awaiting a couple more results which we will receive at our January appt. We need to get another appointment with someone else after this because we have not been satisfied. We have no idea what any of this means andit was not explained it simple terms that a parent could understand. Our daughter has had many little medical problems in the past year and it has been brushed off as if it will happen it will happen to her..........but her seizures now have been worse since her last surgery in September and her development is now lagging. We are tring our best to do everything we can and will continue to. She looks wonderful but we need to decrease the seizures and I want to know more about mitochondrial disease and what it can do.

Heidi

mom of andria

[Guest guest]

Darla,

We moved to Florida in September from Rhode Island. Looking at a summary from the doctor dictation we have only had the one appointment when we received results it says: Muscle ETC enzyme testing showed partial deficiency of complex1 (latter part) and complex 2, lipid myopathy by oil red O staining, in muscle tissue there was significant elevation of long chain acylcarnitines...C14, C16, C16:1, C18, C18:1, and C18:2. We are still awaiting a couple more results which we will receive at our January appt. We need to get another appointment with someone else after this because we have not been satisfied. We have no idea what any of this means andit was not explained it simple terms that a parent could understand. Our daughter has had many little medical problems in the past year and it has been brushed off as if it will happen it will happen to her..........but her seizures now have been worse since her last surgery in September and her development is now lagging. We are tring our best to do everything we can and will continue to. She looks wonderful but we need to decrease the seizures and I want to know more about mitochondrial disease and what it can do.

Heidi

mom of andria

[Guest guest]

Darla,

We moved to Florida in September from Rhode Island. Looking at a summary from the doctor dictation we have only had the one appointment when we received results it says: Muscle ETC enzyme testing showed partial deficiency of complex1 (latter part) and complex 2, lipid myopathy by oil red O staining, in muscle tissue there was significant elevation of long chain acylcarnitines...C14, C16, C16:1, C18, C18:1, and C18:2. We are still awaiting a couple more results which we will receive at our January appt. We need to get another appointment with someone else after this because we have not been satisfied. We have no idea what any of this means andit was not explained it simple terms that a parent could understand. Our daughter has had many little medical problems in the past year and it has been brushed off as if it will happen it will happen to her..........but her seizures now have been worse since her last surgery in September and her development is now lagging. We are tring our best to do everything we can and will continue to. She looks wonderful but we need to decrease the seizures and I want to know more about mitochondrial disease and what it can do.

Heidi

mom of andria

[Guest guest]

My daughter Grace is 19 months old. You will really like Dr. Cohen but do not be suprised if they tell you the appointment is in April. His schedule is very bad, but he is worth it. I have also been told that Gracie cannot break down the long chain fatty acids. This is why dr. Cohen put her on a high fat diet. I am no dietitian, and I may be wrong, but I believe the fruits and natural sugars are more of the long chain fatty acids, whereas the saturated fats are short chain. Gracie does very well on high fat. She cannot tolerate even a little fruit and really hates the taste. It is hard with this disease, because everybody is so different. I know there are also alot of kids in this group who use a low fat diet. This is something you really need to talk to Dr. Cohen about. He is very good with this, and ask him alot of questions. I have had problems going to a dietitian for questions after seeing him. She was wonderful but did not understand her disease or why Dr. Cohen put her on the diet he did. Trufully I still do not know why she is on the diet, I just know it works for her. Also when you do get an appointment call the Mc house here in Cleveland. You can stay there for about 15 dollars, I think. It looks very nice from the outside and it is literally walking distance from the hospital. There is alot of construction going on down there but it is not too bad. We are very lucky and only live 20 min from the hospital. If you need any thing else, please feel free to email me. My personal email is Albregra@....

[Guest guest]

My daughter Grace is 19 months old. You will really like Dr. Cohen but do not be suprised if they tell you the appointment is in April. His schedule is very bad, but he is worth it. I have also been told that Gracie cannot break down the long chain fatty acids. This is why dr. Cohen put her on a high fat diet. I am no dietitian, and I may be wrong, but I believe the fruits and natural sugars are more of the long chain fatty acids, whereas the saturated fats are short chain. Gracie does very well on high fat. She cannot tolerate even a little fruit and really hates the taste. It is hard with this disease, because everybody is so different. I know there are also alot of kids in this group who use a low fat diet. This is something you really need to talk to Dr. Cohen about. He is very good with this, and ask him alot of questions. I have had problems going to a dietitian for questions after seeing him. She was wonderful but did not understand her disease or why Dr. Cohen put her on the diet he did. Trufully I still do not know why she is on the diet, I just know it works for her. Also when you do get an appointment call the Mc house here in Cleveland. You can stay there for about 15 dollars, I think. It looks very nice from the outside and it is literally walking distance from the hospital. There is alot of construction going on down there but it is not too bad. We are very lucky and only live 20 min from the hospital. If you need any thing else, please feel free to email me. My personal email is Albregra@....

[Guest guest]

My daughter Grace is 19 months old. You will really like Dr. Cohen but do not be suprised if they tell you the appointment is in April. His schedule is very bad, but he is worth it. I have also been told that Gracie cannot break down the long chain fatty acids. This is why dr. Cohen put her on a high fat diet. I am no dietitian, and I may be wrong, but I believe the fruits and natural sugars are more of the long chain fatty acids, whereas the saturated fats are short chain. Gracie does very well on high fat. She cannot tolerate even a little fruit and really hates the taste. It is hard with this disease, because everybody is so different. I know there are also alot of kids in this group who use a low fat diet. This is something you really need to talk to Dr. Cohen about. He is very good with this, and ask him alot of questions. I have had problems going to a dietitian for questions after seeing him. She was wonderful but did not understand her disease or why Dr. Cohen put her on the diet he did. Trufully I still do not know why she is on the diet, I just know it works for her. Also when you do get an appointment call the Mc house here in Cleveland. You can stay there for about 15 dollars, I think. It looks very nice from the outside and it is literally walking distance from the hospital. There is alot of construction going on down there but it is not too bad. We are very lucky and only live 20 min from the hospital. If you need any thing else, please feel free to email me. My personal email is Albregra@....

[Guest guest]

I am sorry to hear of all your troubles with your child. Seizures can be a real pain to deal with and sometimes scary too. I hope they get better soon. It can be frustrating trying to figure out the terminology the doctors use and maybe some in this group could help you. I can't help you with the results you got I am afraid. Keep trying. Studying online at UMDF may help as well as other locations to explain some of the terminology that was used. Partial complex 1 is known well in this group so feel free to ask questions about that for sure. Hope you get some answers. Darla: mommy to Asenath Re: New to group Darla, We moved to Florida in September from Rhode Island. Looking at a summary from the doctor dictation we have only had the one appointment when we received results it says: Muscle ETC enzyme testing showed partial deficiency of complex1 (latter part) and complex 2, lipid myopathy by oil red O staining, in muscle tissue there was significant elevation of long chain acylcarnitines...C14, C16, C16:1, C18, C18:1, and C18:2. We are still awaiting a couple more results which we will receive at our January appt. We need to get another appointment with someone else after this because we have not been satisfied. We have no idea what any of this means andit was not explained it simple terms that a parent could understand. Our daughter has had many little medical problems in the past year and it has been brushed off as if it will happen it will happen to her..........but her seizures now have been worse since her last surgery in September and her development is now lagging. We are tring our best to do everything we can and will continue to. She looks wonderful but we need to decrease the seizures and I want to know more about mitochondrial disease and what it can do.Heidi mom of andria Please contact mito-owner with any problems or questions.

[Guest guest]

I am sorry to hear of all your troubles with your child. Seizures can be a real pain to deal with and sometimes scary too. I hope they get better soon. It can be frustrating trying to figure out the terminology the doctors use and maybe some in this group could help you. I can't help you with the results you got I am afraid. Keep trying. Studying online at UMDF may help as well as other locations to explain some of the terminology that was used. Partial complex 1 is known well in this group so feel free to ask questions about that for sure. Hope you get some answers. Darla: mommy to Asenath Re: New to group Darla, We moved to Florida in September from Rhode Island. Looking at a summary from the doctor dictation we have only had the one appointment when we received results it says: Muscle ETC enzyme testing showed partial deficiency of complex1 (latter part) and complex 2, lipid myopathy by oil red O staining, in muscle tissue there was significant elevation of long chain acylcarnitines...C14, C16, C16:1, C18, C18:1, and C18:2. We are still awaiting a couple more results which we will receive at our January appt. We need to get another appointment with someone else after this because we have not been satisfied. We have no idea what any of this means andit was not explained it simple terms that a parent could understand. Our daughter has had many little medical problems in the past year and it has been brushed off as if it will happen it will happen to her..........but her seizures now have been worse since her last surgery in September and her development is now lagging. We are tring our best to do everything we can and will continue to. She looks wonderful but we need to decrease the seizures and I want to know more about mitochondrial disease and what it can do.Heidi mom of andria Please contact mito-owner with any problems or questions.

[Guest guest]

I am sorry to hear of all your troubles with your child. Seizures can be a real pain to deal with and sometimes scary too. I hope they get better soon. It can be frustrating trying to figure out the terminology the doctors use and maybe some in this group could help you. I can't help you with the results you got I am afraid. Keep trying. Studying online at UMDF may help as well as other locations to explain some of the terminology that was used. Partial complex 1 is known well in this group so feel free to ask questions about that for sure. Hope you get some answers. Darla: mommy to Asenath Re: New to group Darla, We moved to Florida in September from Rhode Island. Looking at a summary from the doctor dictation we have only had the one appointment when we received results it says: Muscle ETC enzyme testing showed partial deficiency of complex1 (latter part) and complex 2, lipid myopathy by oil red O staining, in muscle tissue there was significant elevation of long chain acylcarnitines...C14, C16, C16:1, C18, C18:1, and C18:2. We are still awaiting a couple more results which we will receive at our January appt. We need to get another appointment with someone else after this because we have not been satisfied. We have no idea what any of this means andit was not explained it simple terms that a parent could understand. Our daughter has had many little medical problems in the past year and it has been brushed off as if it will happen it will happen to her..........but her seizures now have been worse since her last surgery in September and her development is now lagging. We are tring our best to do everything we can and will continue to. She looks wonderful but we need to decrease the seizures and I want to know more about mitochondrial disease and what it can do.Heidi mom of andria Please contact mito-owner with any problems or questions.

[Guest guest]

I have had neurosarcoidosis for the last four years. Along with it, I

have developed peripheral neuropathy and myopathy. Does anyone know of

a medicine that can help relieve the pain and the " nervy feeling " that

comes along with this disease? How do you deal with the stiffness and

the inability to move properly, walk, stand, and take care of

yourself? Is anyone else wheelchair bound?

[Guest guest]

Hi,

Several of our members are wheelchair bound, and many are on "scooters".

The neuropathy that you're talking about is one of the biggest problems we all face. Many of us are on Neurontin for the nerve pain. It does seem to help. What meds do they have you on?

One of the major causes of the neuropathy for me-- was related to dehydration and to high blood sugars. So by drinking more--even when I think I've been doing well getting the fluids down-- and by cutting out the refined sugars-- my neuropathy has improved.

Also, with the combination of Plaquenil, Methotrexate and Remicade--my body and bone pain has decreased significantly. I've even been able to give up my oxygen during the day time.

BTW, another huge problem with the neuropathy is that we don't clear the air from our lungs due to damage from the sarcoidosis. We get what is termed "air trapping." This happens when the air we breath in doesn't cross the lung sacs to be picked up by the red blood cells. The RBC's then take the oxygen to the extremities, and keep the hands and feet functioning.

For us, a portion of each breathe in gets stuck in the lungs, and turns to carbon dioxide. Then the RBC's oxygen is used up by the organs, and we get the "hyperventilation" effect of our hands and feet being numb. Try to exhale as far as you can, then slowly inhale-- and after consciously doing this for awhile, see if it helps your neuropathy.

I've written on this subject many times, and in our ARCHIVES and LINKS you will find both the past posts, as well as other sites to explain this in detail. If you want, you can take the information to your MD's-- and see if they will address the issue with you. It may be as easy as getting you into a Pulmonary Rehab class-- or they may need to put you on supplemental oxygen so that you can continue ot move around as much as possible.

As far as the balance issues-- that really needs to be addressed with "gait training" so tha tyou can stay safe and not injure yourself by falling.

Hope this helps, and welcome to the family.

Tracie

NS Co-owner/moderator

[Guest guest]

>

> Hello- I have severe neuropathy and myopathy of the spine. The

pain is

> in my feet, toes, legs, and goes up to my sides, stomach, and

chest

> with severe tightness.

>

> I can't stand or walk and am wheel chair bound. I have spasms a

lot.

> The spine was damaged by the sarcoid. I have neuro-sarcoidosis.

>

> My NS is supposed to be in remission. I'm getting new full x-rays

> soon. I've tried Topomax, Lyria, Cymbalta with bad reactions. Is

> there another medication, IV medication, or pill that has been

used

> that helped?

>

> My feet and legs feel like tight bands with tingling and pain, as

well

> as my legs throbbing. I use Neurontin and Baclofen, but they do

not

> help a lot, especially Neurontin. It is hard to sleep, eat, and I

have

> gained weight due to inactivity. I am very depressed and hurting

all

> the time. Can someone please help?

>

hello my name is tina and i am in the same situation and i just

wanted to let you know to be strong and if i find anything i will

let you know. my email address is thompsontt4@... email any

time

[Guest guest]

>

> Hello- I have severe neuropathy and myopathy of the spine. The

pain is

> in my feet, toes, legs, and goes up to my sides, stomach, and

chest

> with severe tightness.

>

> I can't stand or walk and am wheel chair bound. I have spasms a

lot.

> The spine was damaged by the sarcoid. I have neuro-sarcoidosis.

>

> My NS is supposed to be in remission. I'm getting new full x-rays

> soon. I've tried Topomax, Lyria, Cymbalta with bad reactions. Is

> there another medication, IV medication, or pill that has been

used

> that helped?

>

> My feet and legs feel like tight bands with tingling and pain, as

well

> as my legs throbbing. I use Neurontin and Baclofen, but they do

not

> help a lot, especially Neurontin. It is hard to sleep, eat, and I

have

> gained weight due to inactivity. I am very depressed and hurting

all

> the time. Can someone please help?

>

hello my name is tina and i am in the same situation and i just

wanted to let you know to be strong and if i find anything i will

let you know. my email address is thompsontt4@... email any

time

[Guest guest]

>

> Hello- I have severe neuropathy and myopathy of the spine. The

pain is

> in my feet, toes, legs, and goes up to my sides, stomach, and

chest

> with severe tightness.

>

> I can't stand or walk and am wheel chair bound. I have spasms a

lot.

> The spine was damaged by the sarcoid. I have neuro-sarcoidosis.

>

> My NS is supposed to be in remission. I'm getting new full x-rays

> soon. I've tried Topomax, Lyria, Cymbalta with bad reactions. Is

> there another medication, IV medication, or pill that has been

used

> that helped?

>

> My feet and legs feel like tight bands with tingling and pain, as

well

> as my legs throbbing. I use Neurontin and Baclofen, but they do

not

> help a lot, especially Neurontin. It is hard to sleep, eat, and I

have

> gained weight due to inactivity. I am very depressed and hurting

all

> the time. Can someone please help?

>

hello my name is tina and i am in the same situation and i just

wanted to let you know to be strong and if i find anything i will

let you know. my email address is thompsontt4@... email any

time

[Guest guest]

Hi, My name is Barb. I have been thinking about what has worked and what hasn't worked for me. Early on I had IVIG (Gamma Globulin given intravenously) and I had plasmapheresis(where they remove your plasma and re-infuse new plasma along with plasma expanders) At the time we didn't think it helped at all as I continued to have pain. But now, some four or five years later I am not as bad as most people I meet here. (I thank God for that) Perhaps it all worked more than we thought at the time. So something like that might help. Otherwise I take pain meds. I use a duragesic patch and Vicodin for breakthrough pain, which is not often. I may take two vicodins around the time my patch is due to be changed. So that is two every three days or so. And I take Lyrica and Paxil for anxiety. I don't have depression but I get anxious and sometimes the feeling is the same. I wish I could help more. Feel free to email me any time if you just want to talk. We can

go to the chat room. statpdq@... God Bless You, Barb thompsontt4 wrote: >> Hello- I have severe neuropathy and myopathy of the spine. The pain is > in my feet, toes, legs, and goes up to my sides, stomach, and chest > with severe tightness. > > I can't stand or walk and am wheel chair bound. I have spasms a lot. > The spine was damaged by the sarcoid. I have neuro-sarcoidosis.> > My NS is supposed to be in remission. I'm getting new full x-rays > soon. I've tried Topomax, Lyria, Cymbalta with bad reactions. Is > there another medication, IV

medication, or pill that has been used > that helped?> > My feet and legs feel like tight bands with tingling and pain, as well > as my legs throbbing. I use Neurontin and Baclofen, but they do not > help a lot, especially Neurontin. It is hard to sleep, eat, and I have > gained weight due to inactivity. I am very depressed and hurting all > the time. Can someone please help?>hello my name is tina and i am in the same situation and i just wanted to let you know to be strong and if i find anything i will let you know. my email address is thompsontt4@... email any time~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM

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