Pictures
Robbie,
None of us could say we are the same. Unfortunately, it is one of the long list of things that comes with this disease.
All of us are different with how we cope and make it through the day.
You, at the moment, are having a very bad time. We can post stuff, but it might be time to take some action. The MS Societies have people by the phone (often with MS) who you can talk to (I phoned them a few weeks after being diagnosed) and doctors can point you in the direction of counsellors (I had three sessions over the Summer). They don't provide a cure, they can't make you walk better, but they can listen and try to make some sense of what is going on in your life and offer advice on ways of dealing with the never-ending symptoms / losses etc.
Think about it - because I see someone on a downward spiral and none of us want to see that, and I imagine the same goes for your wife.
Give you wife and that huge dog a big hug tonight and then do something tomorrow. It's a crap disease, but you only get one life.
Ian
None of us could say we are the same. Unfortunately, it is one of the long list of things that comes with this disease.
All of us are different with how we cope and make it through the day.
You, at the moment, are having a very bad time. We can post stuff, but it might be time to take some action. The MS Societies have people by the phone (often with MS) who you can talk to (I phoned them a few weeks after being diagnosed) and doctors can point you in the direction of counsellors (I had three sessions over the Summer). They don't provide a cure, they can't make you walk better, but they can listen and try to make some sense of what is going on in your life and offer advice on ways of dealing with the never-ending symptoms / losses etc.
Think about it - because I see someone on a downward spiral and none of us want to see that, and I imagine the same goes for your wife.
Give you wife and that huge dog a big hug tonight and then do something tomorrow. It's a crap disease, but you only get one life.
Ian
I was sitting outside the other day and my neighbors where in their yard doing some raking. They are both in their 70’s and they really are quite active, I sat there and thought wow here I am 41 and can hardly move and they are raking leaves like a couple of teenagers. People take times like that for granted, I hope we have more than one life because I am really looking forward to the next one, I want it to be full and i want those golden years. Karen has to work late tonight, you know the one income family thing but I will give her a hug, she deserves a lot of them…
Robbie,
You're getting on my nerves - I'm supposed to be the grumpy one on this site. There are some alternatives to watching your elderly neighbours. Treatment - options for SP MS are trials of the following: Rituximab and MBP8298. Ask your neuro about these and how you could get on them. There is the risk of the placebo arm, but if you don't enter you can't win.
Bone Marrow Transplantation - being trialled in Canada and must be being trialled in the US. Aim is to stop progression. Ask you neuro.
You need to start pursuing these options - or abx (e-mail Anecdote). You might want out, but before that happens you need to pursue some / all of the above. At least when you go you can say you tried!
Life's a bitch (for some) - we know that. Life's unfair - tell me about it. But it was unfair for the 250,000 killed by the Tsunami or those in the Twin Towers. It's unfair for Michael J Fox. Fight a little while you can and be a pest. Look at Pete on the Tysabri forum - chronic progressive since 84 but still fighting. Have a week off this site and take a deep breath.
Ian
You're getting on my nerves - I'm supposed to be the grumpy one on this site. There are some alternatives to watching your elderly neighbours. Treatment - options for SP MS are trials of the following: Rituximab and MBP8298. Ask your neuro about these and how you could get on them. There is the risk of the placebo arm, but if you don't enter you can't win.
Bone Marrow Transplantation - being trialled in Canada and must be being trialled in the US. Aim is to stop progression. Ask you neuro.
You need to start pursuing these options - or abx (e-mail Anecdote). You might want out, but before that happens you need to pursue some / all of the above. At least when you go you can say you tried!
Life's a bitch (for some) - we know that. Life's unfair - tell me about it. But it was unfair for the 250,000 killed by the Tsunami or those in the Twin Towers. It's unfair for Michael J Fox. Fight a little while you can and be a pest. Look at Pete on the Tysabri forum - chronic progressive since 84 but still fighting. Have a week off this site and take a deep breath.
Ian
Hi Robbie
I'm not going to preach at you. You are just going through a tough time right now and you are allowed to feel a little sorry for yourself. I'm having some challenges myself at the moment and it can be damn frustrating! Most of the time I refuse to do the "woe is me" thing but once in a while it creeps in. I think maybe it is best to allow it to come it but give it a very short time limit then kick it back out.
You can have a rewarding and full life if you start looking at the glass half full instead of half empty. No matter what challenges a person has life can be enjoyed if you take the time to focus on doing that instead of focusing on the negative.
You never know what is around the corner-it may be something really good!
I said I wouldn't preach at you but I guess I did-sorry! I just want you to know that other feel your frustrations also. You are not alone.
Lori
I'm not going to preach at you. You are just going through a tough time right now and you are allowed to feel a little sorry for yourself. I'm having some challenges myself at the moment and it can be damn frustrating! Most of the time I refuse to do the "woe is me" thing but once in a while it creeps in. I think maybe it is best to allow it to come it but give it a very short time limit then kick it back out.
You can have a rewarding and full life if you start looking at the glass half full instead of half empty. No matter what challenges a person has life can be enjoyed if you take the time to focus on doing that instead of focusing on the negative.
You never know what is around the corner-it may be something really good!
I said I wouldn't preach at you but I guess I did-sorry! I just want you to know that other feel your frustrations also. You are not alone.
Lori
- lyndacarol
- Family Elder
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Entitled to feel "low"
Robbie, many have written, many more have read and just don't know what to say. We understand, we have been where you are, too. You will get through this! We keep you in our prayers. But you are human and entitled to feel low--this disease is the PITS!
Wow! I hope that's correct! Our sons were born in July and August!! But then again, my Mom had many signs of MS that I recall. and she was also born in August...robbie wrote:I heard today that they think that babies that are born in the summer months are less likely to develop ms because their mothers would have more vitamin d in their blood…

Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
hey Robbie, just wanted to chime in with everyone else-- hope is a powerful thing, and with the insane amount of research going on daily, it's one thing MS'ers should have in abundance. You'll get through this rough patch and I'm fairly certain the grass is greener on the other side of it
And Ian's suggestions are spot on-- lots of people who understand are by the phone through the various MS societies. The internet is good, but has its limitations in terms of immediate help.
All our best and glad you're feeling a little better! neat pictures.
-a

And Ian's suggestions are spot on-- lots of people who understand are by the phone through the various MS societies. The internet is good, but has its limitations in terms of immediate help.
All our best and glad you're feeling a little better! neat pictures.
-a
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
That sounds really promising Bob, if you could take something that repairs the myelin as fast as or faster than the ms takes it away then that would be all you could ask. I hope that something happens with that, obviously the sooner the better.
Does any one go to a chiropractor for any of the pains they have? My lower back is always hurting because of my leg movement or lack of and I was wondering if a chiropractor could help. Thanks for any replies…
Thanks Arron a couple years back I did see a counselor for 3 months or so, he was not through the ms society but a referral from my family doctor because he was worried about depression and I can’t really say that it helped or not. It was before I had stopped working and when I returned to work after a layoff I was much better. Not working any more was a huge thing for me and I still can’t get use to it, now that the ms is getting so much worse it’s like dealing with new problems from the beginning, I just went for so long thinking this isn’t so bad but now it’s really here so I have to deal and sitting in a room with others with ms and telling my story I am not sure will help. I am sure it helps many but for me I just want to hide from the healthy world...
I will try not to be so down on everything and I like reading other peoples posts because I know they understand and that’s huge for me…
Does any one go to a chiropractor for any of the pains they have? My lower back is always hurting because of my leg movement or lack of and I was wondering if a chiropractor could help. Thanks for any replies…
Thanks Arron a couple years back I did see a counselor for 3 months or so, he was not through the ms society but a referral from my family doctor because he was worried about depression and I can’t really say that it helped or not. It was before I had stopped working and when I returned to work after a layoff I was much better. Not working any more was a huge thing for me and I still can’t get use to it, now that the ms is getting so much worse it’s like dealing with new problems from the beginning, I just went for so long thinking this isn’t so bad but now it’s really here so I have to deal and sitting in a room with others with ms and telling my story I am not sure will help. I am sure it helps many but for me I just want to hide from the healthy world...
I will try not to be so down on everything and I like reading other peoples posts because I know they understand and that’s huge for me…
Robbie,
Glad you seem to be picking up on this rollercoaster of a disease.
I'm having some treatment in 2.5 weeks time (in hospital for 8 days). My recent relapse wrecked my walking and when I went to the hospital last Tuesday I used a wheelchair for the first time as the corridors are long. My 70 year old dad pushed me (Urgh worst nightmare! Shouldn't it have been the other way round?).
While my dad was chatting up one of the nurses (he still thinks he is in his 40s), I spoke to a guy my age who was having the treatment the week after me. Never met him before, but I thought to myself "you understand what I'm going through". I remember seeing a news article about Rituxan and the woman said "you have to be in this body to understand how bad this is" (or words to that effect). She was spot on.
PM me if you want to - but not for 2.5 weeks from mid-November. This was not the run-up I wanted to Christmas (whoops forgot the 'C' word is outlawed in the US - I mean 'Holidays').
All the best
Ian
Glad you seem to be picking up on this rollercoaster of a disease.
I'm having some treatment in 2.5 weeks time (in hospital for 8 days). My recent relapse wrecked my walking and when I went to the hospital last Tuesday I used a wheelchair for the first time as the corridors are long. My 70 year old dad pushed me (Urgh worst nightmare! Shouldn't it have been the other way round?).
While my dad was chatting up one of the nurses (he still thinks he is in his 40s), I spoke to a guy my age who was having the treatment the week after me. Never met him before, but I thought to myself "you understand what I'm going through". I remember seeing a news article about Rituxan and the woman said "you have to be in this body to understand how bad this is" (or words to that effect). She was spot on.
PM me if you want to - but not for 2.5 weeks from mid-November. This was not the run-up I wanted to Christmas (whoops forgot the 'C' word is outlawed in the US - I mean 'Holidays').
All the best
Ian
Robbie John went to a chiropractor and he did note some improvement. This was a couple years ago when he had the pain down I think it was the right side. That was so nice to type when I can't remember which side it was as the pain is gone.
It was expensive though. Read below it will help.
Inflammatory Foods
The foods you eat play an important role in how you feel. Loading up on junk foods and fast foods tend to make you feel worse due to the unhealthy fats that are used in the cooking processes. Junk foods also usually contain ingredients that can irritate inflammation. Red meat, eggs, and wheat products all contain something called arachidonic acid. While some arachidonic acid is essential for your health, too much arachidonic acid in the diet will make your inflammation worse. Junk and processed foods often contain too much sugar too. Anecdotal evidence suggests that excessive consumption of sugars and refined starchy carbohydrates like white flour can also aggravate inflammation. Another possible source of irritation are plants from the nightshade family.
Nightshade Plants
While whole fruits and vegetables are important for their vitamins, minerals, and natural antioxidants, some vegetables like potatoes, tomatoes, and eggplant may actually make inflammation worse. These vegetables are part of the nightshade family of plants and contain a chemical alkaloid called solanine. Solanine can trigger inflammation in some people and nightshade plants should be avoided to see if your pain and inflammation improves.
Water And Dehydration
One big factor in pain is dehydration. When you do not drink enough water, you hurt and inflammation feels worse. Make sure to drink at least 60 to 80 ounces of water every day. Avoid heavy caffeine and alcohol consumption because they contain diuretics that may cause your body to lose water.
Delayed Food Allergies
Many people have delayed reactions to foods that will increase inflammation and pain. These type of “food allergies” are not really allergies like hayfever, but they do involve the immune system and can make pain and inflammation much worse. Frequently the underlying problem is due to faulty digestion or excessive consumption of any particular food. Most any food that is consumed more than 4 days a week can be suspected as a possible allergen, but some of the more common allergic foods are milk and dairy, wheat, corn, eggs, beef, yeast, and soy. Even healthy foods can cause problems. There are blood tests that can be performed, or elimination diets that can be undertaken to determine the allergic foods.
Can the Foods You Eat Make a Difference in Chronic Pain?
Change Your Diet to an Anti-inflammatory Diets
The common diet high in fat, high in red meat and high in processed foods is likely to increase inflammation, while a healthy diet made up of whole foods can actually help to decrease inflammation and pain. Start by avoiding sugars, processed foods, and junk food whenever possible. Choose fresh foods including anti-inflammatory foods like fruits and vegetables.
Anti-Inflammatory Foods
Essential Fatty Acids, Fats, and Oils
Adding anti-inflammatory foods that contain the right type of fats in your diet will impact pain and inflammation in a positive way. Omega-3 essential fatty acids are found in cold water oily fish, walnuts, flax and pumpkin seeds and will help to reduce inflammation. Adding omega 3 essential fatty acid supplements with flax oil or fish oil capsules may also help reduce inflammation, just be sure to speak with a doctor or nutritionist before taking larger, therapeutic doses of any supplements.
Olive oil is another type of oil that won't promote inflammation. In fact, olive oil has been shown to reduce the risk of cardiovascular disease, and will help to reduce pain. Other healthy oils include canola oil, grapeseed oil, and walnut oil.
Protein
Protein is needed to build healthy body tissues. Good protein choices include lean poultry, fish and seafood, nuts, legumes and seeds. Red meats may trigger inflammation, so cut back on fatty red meats. When you do eat red meat, choose grass-fed, low fat bison, venison and other game meats. Soybeans, tofu, and soy milk are three great sources of soy proteins that may help to reduce your pain and inflammation.
Carbohydrates and Fiber
Stay away from the starchier carbohydrates like pastas and white breads and you should avoid sugar too. Choose green leafy vegetables, green and brightly colored vegetables and lots of fresh whole fruits. Berries are a great choice, especially blueberries and strawberries which are packed with anti-inflammatory phytochemicals and anti-oxidants. Apples and red onions are great sources of quercetin, which has strong anti-inflammatory properties. Green vegetables and whole fruits are also important as sources of dietary fiber. Oats and oatmeal contain beneficial fiber too.
Anti-Inflammatory Diet Tips
Over all, when you are choosing anti-inflammatory foods to help reduce your inflammation and pain, choose fresh foods instead of heavily processed foods. Here are some tips:
Breakfast could be oatmeal served with fresh berries and walnuts, with a cup of soy milk.
Snack on whole fruits, nuts, seeds, and fresh vegetables throughout the day instead of cookies and candy.
Eat more fish and less fatty red meat.
Stay away from deep fried foods and bake or stir fry your meals instead.
Choose green, orange, and yellow vegetables for your side dishes.
Drink plenty of water, fresh 100 juices, herbal teas, and green tea.
Use this Nutrition and Calorie Guide for Men and Women to help you determine how many calories you need each day. Maintaining a healthy weight is another way to reduce your pain from inflammation.
http://nutrition.about.com/od/dietsform ... food_2.htm


Inflammatory Foods
The foods you eat play an important role in how you feel. Loading up on junk foods and fast foods tend to make you feel worse due to the unhealthy fats that are used in the cooking processes. Junk foods also usually contain ingredients that can irritate inflammation. Red meat, eggs, and wheat products all contain something called arachidonic acid. While some arachidonic acid is essential for your health, too much arachidonic acid in the diet will make your inflammation worse. Junk and processed foods often contain too much sugar too. Anecdotal evidence suggests that excessive consumption of sugars and refined starchy carbohydrates like white flour can also aggravate inflammation. Another possible source of irritation are plants from the nightshade family.
Nightshade Plants
While whole fruits and vegetables are important for their vitamins, minerals, and natural antioxidants, some vegetables like potatoes, tomatoes, and eggplant may actually make inflammation worse. These vegetables are part of the nightshade family of plants and contain a chemical alkaloid called solanine. Solanine can trigger inflammation in some people and nightshade plants should be avoided to see if your pain and inflammation improves.
Water And Dehydration
One big factor in pain is dehydration. When you do not drink enough water, you hurt and inflammation feels worse. Make sure to drink at least 60 to 80 ounces of water every day. Avoid heavy caffeine and alcohol consumption because they contain diuretics that may cause your body to lose water.
Delayed Food Allergies
Many people have delayed reactions to foods that will increase inflammation and pain. These type of “food allergies” are not really allergies like hayfever, but they do involve the immune system and can make pain and inflammation much worse. Frequently the underlying problem is due to faulty digestion or excessive consumption of any particular food. Most any food that is consumed more than 4 days a week can be suspected as a possible allergen, but some of the more common allergic foods are milk and dairy, wheat, corn, eggs, beef, yeast, and soy. Even healthy foods can cause problems. There are blood tests that can be performed, or elimination diets that can be undertaken to determine the allergic foods.
Can the Foods You Eat Make a Difference in Chronic Pain?
Change Your Diet to an Anti-inflammatory Diets
The common diet high in fat, high in red meat and high in processed foods is likely to increase inflammation, while a healthy diet made up of whole foods can actually help to decrease inflammation and pain. Start by avoiding sugars, processed foods, and junk food whenever possible. Choose fresh foods including anti-inflammatory foods like fruits and vegetables.
Anti-Inflammatory Foods
Essential Fatty Acids, Fats, and Oils
Adding anti-inflammatory foods that contain the right type of fats in your diet will impact pain and inflammation in a positive way. Omega-3 essential fatty acids are found in cold water oily fish, walnuts, flax and pumpkin seeds and will help to reduce inflammation. Adding omega 3 essential fatty acid supplements with flax oil or fish oil capsules may also help reduce inflammation, just be sure to speak with a doctor or nutritionist before taking larger, therapeutic doses of any supplements.
Olive oil is another type of oil that won't promote inflammation. In fact, olive oil has been shown to reduce the risk of cardiovascular disease, and will help to reduce pain. Other healthy oils include canola oil, grapeseed oil, and walnut oil.
Protein
Protein is needed to build healthy body tissues. Good protein choices include lean poultry, fish and seafood, nuts, legumes and seeds. Red meats may trigger inflammation, so cut back on fatty red meats. When you do eat red meat, choose grass-fed, low fat bison, venison and other game meats. Soybeans, tofu, and soy milk are three great sources of soy proteins that may help to reduce your pain and inflammation.
Carbohydrates and Fiber
Stay away from the starchier carbohydrates like pastas and white breads and you should avoid sugar too. Choose green leafy vegetables, green and brightly colored vegetables and lots of fresh whole fruits. Berries are a great choice, especially blueberries and strawberries which are packed with anti-inflammatory phytochemicals and anti-oxidants. Apples and red onions are great sources of quercetin, which has strong anti-inflammatory properties. Green vegetables and whole fruits are also important as sources of dietary fiber. Oats and oatmeal contain beneficial fiber too.
Anti-Inflammatory Diet Tips
Over all, when you are choosing anti-inflammatory foods to help reduce your inflammation and pain, choose fresh foods instead of heavily processed foods. Here are some tips:
Breakfast could be oatmeal served with fresh berries and walnuts, with a cup of soy milk.
Snack on whole fruits, nuts, seeds, and fresh vegetables throughout the day instead of cookies and candy.
Eat more fish and less fatty red meat.
Stay away from deep fried foods and bake or stir fry your meals instead.
Choose green, orange, and yellow vegetables for your side dishes.
Drink plenty of water, fresh 100 juices, herbal teas, and green tea.
Use this Nutrition and Calorie Guide for Men and Women to help you determine how many calories you need each day. Maintaining a healthy weight is another way to reduce your pain from inflammation.
http://nutrition.about.com/od/dietsform ... food_2.htm
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.