[ARCHIVED THREAD] - Multiple Sclerosis (Page 1 of 2)
Posted: 12/14/2011 5:53:54 AM EDT
| My wife has been diagnosed with this stuff. Anyone have it or know someone who has it? What can I expect? She starts her shot in the next day or 2... I know posting this in GD and expecting the thread to stay on point is asking a lot but figured Id try it. She is 29 btw. |
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You have no idea what you're in for and nothing I can say can prepare you.
My aunt died of MS years ago. As you're aware, there is no cure. Your wife needs to make a lifelong commitment to fighting this, getting as much exercise as she can, and maintaining a positive attitude. She's going to die, but so are we all. If she gives up, she'll die sooner. If she fights and stays strong, she'll make it until she's old and grey. |
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I had a client that had it. She had her good days - and her difficult periods where she could not work (really couldn't work). I sensed it was about eating right and maintaining your balanced health, avoiding stress or other things that test your immune system and put you into the hurt. God bless her. |
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It is a disease that is going to vary greatly from person to person, some people will lead a relatively normal life others will be a complete mess most will be some place in between.
oh yeah you need good health insurance, this is one of the most hideously expensive disorders you can have all the drugs cost a fortune, plus frequent MRIs. |
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My wife was diagnosed with it about (10) years ago and she has had a few episodes, the worst was double vision for about 12 weeks so I was having to drive her to work.
It behaves differently with each person, men seem to get it really hard. Some advice, try to de-stress her life. With my wife, epsiodes are more likely if she is mentally or physically stressed. My wife takes the weekly interferon shots, about 16K a year if you don't have insurance. Good luck, hopefully she will get a mild case and be able to keep working and functioning normally. |
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My wife has been diagnosed with this stuff. Anyone have it or know someone who has it? What can I expect? She starts her shot in the next day or 2... I know posting this in GD and expecting the thread to stay on point is asking a lot but figured Id try it. She is 29 btw. My wife was diagnosed almost five years ago. Did she recently have kids? |
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MS is one of several debilitating 'demyelinating' diseases. Your wife's immune system is mistakenly attacking the myelin sheath surrounding nerve axons. There's a complex mixture of immune responses working against each other but the results are basically that the myelin sheath is being eaten away, exposing nodes along the axon to neurotransmitters diffused throughout the cytoplasm in the nerve fascicle, The nerve transmissions are being slowed or lost and the message conduction system is interrupted. Most of this may be happening randomly in the white matter of her brain. That's why the symptoms are confusing and recurring.
She has all my sympathy. It's one helluva thing to live with but by no means untreatable or fatal. There are constant advances in therapy. You'll be working closely with a neurologist. There are many, many agencies that will assist you. Your best bet is educating yourself on what's happening. Understanding the disease process will make sense of the physical symptoms. |
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Whats considered recent LOL... Our only child is 3. We are lucky in the sense that she has pretty good insurance, and at this stage in the game they tell her she has regressive remitting kind (is that right) ? it is probably relapsing remitting which the "good" kind. She will have a flare up of symptoms, they will go away(at least partially) for awhile(possibly years or even decades) then come back. the progressives types are the nasty ones because the symptoms don't go away between attacks they just keep compounding Did they tell you how many lesions they found on the MRI? |
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Whats considered recent LOL... Our only child is 3. We are lucky in the sense that she has pretty good insurance, and at this stage in the game they tell her she has regressive remitting kind (is that right) ? It is called relapsing-remitting. It is characterized by sporadic attacks that will abate for months or years and then reappear. Typically there is a slow progression in the severity of attacks. The time in between attacks she may demonstrate no or minimal symptoms. Thankfully you have insurance, and if needed you may be able to discuss treatment options with pharmaceutical companies regarding the cost of medications. The main disease-modifying medication is interferon 1b, in the US known as Betaseron. But, as someone said, there is no cure for the disease - current medications slow the progression and/or limit the severity and frequency of flare ups. |
| Just sent ya an IM. The reason I asked about kids is my wife noticed her first symptoms almost a year after having our first child. She started the shots at first & then switched to a blood infusion drug called Tysabri that was administered once a month. It is still kind of in the experimental phase with the FDA. It worked great for about three years then she had to get off of all treatment when we decided to have another child. After our latest child was born she got back on it for about four months and it jeopardized her immune system and came down with a bad case of Meningitis so the pulled her off of it. It cost about 26k a year so insurance was a good thing. |
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You have no idea what you're in for and nothing I can say can prepare you. My aunt died of MS years ago. As you're aware, there is no cure. Your wife needs to make a lifelong commitment to fighting this, getting as much exercise as she can, and maintaining a positive attitude. She's going to die, but so are we all. If she gives up, she'll die sooner. If she fights and stays strong, she'll make it until she's old and grey. Uninformed advice. It depends on which type she has and random luck. Relapsing-Remitting MS (RRMS). The most common form of the disease (85 percent) experience clearly defined attacks of worsening neurologic function. Relapses and flare-ups occur and they’re followed by recovery periods. There may be only one attack followed by recovery or there may be a progression of attacks. These patients can lead a fairly normal life depending on the number of attacks and the degree of recovery following an attack. Some people get lucky and only have one or two attacks. Primary-Progressive MS (PPMS). This form of MS (10 percent) causes steadily worsening neurologic function—without distinct relapses or remissions. Only minor and occasional plateaus and improvements occur. This is the bad one. Following diagnosis patients usually experience worsening health as the disease continues to destroy nerves and motor function. It's not pretty to watch this as the patient becomes an invalid is unable to function. |
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Just sent ya an IM. The reason I asked about kids is my wife noticed her first symptoms almost a year after having our first child. She started the shots at first & then switched to a blood infusion drug called Tysabri that was administered once a month. It is still kind of in the experimental phase with the FDA. It worked great for about three years then she had to get off of all treatment when we decided to have another child. After our latest child was born she got back on it for about four months and it jeopardized her immune system and came down with a bad case of Meningitis so the pulled her off of it. It cost about 26k a year so insurance was a good thing. Tysabri is in full approved with the FDA but you have to be very careful with long term treatment with it. Since its and immunosuppresant therapy, risk of infection goes up, especially a particular nasty infection called PML (progressive multifocal leukoencephalopathy). If your wife is interested in continuing with Tysabri after the birth of y'alls child she may want to have a test for JC virus antibodies done. If the test is positive for the antibidoes, your risk for PML infection is greater (but not overwhelmingly so) especially if you have been on the treatment more than 2 years, and you may want to discuss any alternate therapies, although it sounds like she has already tried copaxone or betaseron eta: Full disclosure, I am not a doctor or nurse, I just work in a neurology clinic specializing in the care of MS though and am familiar with many of the treatments. |
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I know a lady that has it. She went to UT Southwestern in Dallas, and started a program with a very specific diet. I don't know a lot of the details of the diet, but she lost some weight(she wasn't overweight) and started a training regiment. It's amazing, she runs marathons, and got herself in excellent shape. She has had MS for about 10 yrs now, and you would never know it, unless she told you.
This diet/workout program totally transformed her and she has been able to keep the disease in check. Good luck Posted Via AR15.Com Mobile |
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I know a lady that has it. She went to UT Southwestern in Dallas, and started a program with a very specific diet. I don't know a lot of the details of the diet, but she lost some weight(she wasn't overweight) and started a training regiment. It's amazing, she runs marathons, and got herself in excellent shape. She has had MS for about 10 yrs now, and you would never know it, unless she told you. This diet/workout program totally transformed her and she has been able to keep the disease in check. Good luck Posted Via AR15.Com Mobile thats good to hear. 
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Just sent ya an IM. The reason I asked about kids is my wife noticed her first symptoms almost a year after having our first child. She started the shots at first & then switched to a blood infusion drug called Tysabri that was administered once a month. It is still kind of in the experimental phase with the FDA. It worked great for about three years then she had to get off of all treatment when we decided to have another child. After our latest child was born she got back on it for about four months and it jeopardized her immune system and came down with a bad case of Meningitis so the pulled her off of it. It cost about 26k a year so insurance was a good thing. Tysabri is in full approved with the FDA but you have to be very careful with long term treatment with it. Since its and immunosuppresant therapy, risk of infection goes up, especially a particular nasty infection called PML (progressive multifocal leukoencephalopathy). If your wife is interested in continuing with Tysabri after the birth of y'alls child she may want to have a test for JC virus antibodies done. If the test is positive for the antibidoes, your risk for PML infection is greater (but not overwhelmingly so) especially if you have been on the treatment more than 2 years, and you may want to discuss any alternate therapies, although it sounds like she has already tried copaxone. eta: Full disclosure, I am not a doctor or nurse, I just work in a neurology clinic specializing in the care of MS though and am familiar with many of the treatments. Thanks. She got back on Tysabri after she had our son and she has been tested for the JC virus. The risk of PML was kind of the hard part to make the decision to use it or not. PML is some nasty shit. When she came down with Meningitis her Neurologist had her go thru a form of dialysis to get all the Tysabri out of her system. This was back in June & she has not started any other treatments yet. |
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WOW... Thanks for all the IM's fellas, lots of useful info... Really appreciate the support and willingness to help someone "on the internet" Lots of good folks here in this community... Thanks again I am not sure how your wife feels about it, but if she would like to talk to someone about it my wife would be more than happy to do so. Maybe by email or if she has FB? Just let me know. |
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I know a lady that has it. She went to UT Southwestern in Dallas, and started a program with a very specific diet. I don't know a lot of the details of the diet, but she lost some weight(she wasn't overweight) and started a training regiment. It's amazing, she runs marathons, and got herself in excellent shape. She has had MS for about 10 yrs now, and you would never know it, unless she told you. This diet/workout program totally transformed her and she has been able to keep the disease in check. Good luck Posted Via AR15.Com Mobile it might be something called the swank diet, it is essentially a low saturated fat, low/no red meat diet. There is fairly good amount of anecdotal evidence that it might be beneficial, if it doesn't help the disease directly it is a good diet for general good health so it can't hurt. |
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My wife was diagnosed with progressive MS (the worst kind) 10 years ago.
You will have to learn to live one day at a time because everyday with an MS sufferer is different and you never know what you're going to get. Some days will be OK, and some days will be hell. The one constant through it all is that you will NOT be able to take away her pain and you will feel helpless; don't let it eat you up inside, because it will if you let it. YOU will have to be strong, YOU will have to do things that you never thought you would have to do, and YOU will suffer right along with her. God bless you both. Please feel free to IM me if there is ever a time when you just need to talk to someone who knows what you are going through. |
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Just sent ya an IM. The reason I asked about kids is my wife noticed her first symptoms almost a year after having our first child. She started the shots at first & then switched to a blood infusion drug called Tysabri that was administered once a month. It is still kind of in the experimental phase with the FDA. It worked great for about three years then she had to get off of all treatment when we decided to have another child. After our latest child was born she got back on it for about four months and it jeopardized her immune system and came down with a bad case of Meningitis so the pulled her off of it. It cost about 26k a year so insurance was a good thing. Tysabri is in full approved with the FDA but you have to be very careful with long term treatment with it. Since its and immunosuppresant therapy, risk of infection goes up, especially a particular nasty infection called PML (progressive multifocal leukoencephalopathy). If your wife is interested in continuing with Tysabri after the birth of y'alls child she may want to have a test for JC virus antibodies done. If the test is positive for the antibidoes, your risk for PML infection is greater (but not overwhelmingly so) especially if you have been on the treatment more than 2 years, and you may want to discuss any alternate therapies, although it sounds like she has already tried copaxone. eta: Full disclosure, I am not a doctor or nurse, I just work in a neurology clinic specializing in the care of MS though and am familiar with many of the treatments. Thanks. She got back on Tysabri after she had our son and she has been tested for the JC virus. The risk of PML was kind of the hard part to make the decision to use it or not. PML is some nasty shit. When she came down with Meningitis her Neurologist had her go thru a form of dialysis to get all the Tysabri out of her system. This was back in June & she has not started any other treatments yet. Tysabri is finicky that way. We have many many patients that swear by it and its the only treatment that makes their life bearable and they would rather risk the infection than live in the agony that they were in. Its definitely something where folks have to weigh the risks vs. the reward. |
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People have had good success controlling MS with diet, specifically the "caveman" diet that GD is so hateful of
http://www.primalpete.co.uk/2011/12/12/multiple-sclerosis-and-the-primal-lifestyle/ http://www.youtube.com/watch?v=KLjgBLwH3Wc&feature=youtu.be |
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My mom has had it for 20+ years. In the beginning it wasn't really noticeable for her. Over the last several years her vision has really declined. She gets numbness in her limbs occasionally too, but thankfully has avoided the most debilitating symptoms.
It varies widely with each case we were told. |
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I know a lady that has it. She went to UT Southwestern in Dallas, and started a program with a very specific diet. I don't know a lot of the details of the diet, but she lost some weight(she wasn't overweight) and started a training regiment. It's amazing, she runs marathons, and got herself in excellent shape. She has had MS for about 10 yrs now, and you would never know it, unless she told you. This diet/workout program totally transformed her and she has been able to keep the disease in check. Good luck Posted Via AR15.Com Mobile it might be something called the swank diet, it is essentially a low saturated fat, low/no red meat diet. There is fairly good amount of anecdotal evidence that it might be beneficial, if it doesn't help the disease directly it is a good diet for general good health so it can't hurt. I think that's the name. I know there's no cure, but it really worked for this lady. I don't know how aggressive or what stage the MS is with my friend, but even without the disease, the commitment this lady made with dealing with her health was amazing. Just like any other health challenge, attitude towards fighting is huge. Posted Via AR15.Com Mobile |
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WOW... Thanks for all the IM's fellas, lots of useful info... Really appreciate the support and willingness to help someone "on the internet" Lots of good folks here in this community... Thanks again This is ARFcom, not "the internet", they are different. ARF has the highest concentration of good people anywhere. I friend of mine I met on this board, his wife has MS (the bad kind) very sad. Maybe he will chime in. |
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My mom was diagnosed with RRMS at age 39 back when they knew nothing about it and had no drugs or therapies.(Thank AIDS research for the current leaps.) She is now 72 and is still walking, so a somewhat normal life is VERY possible.
She has taken Betainterferon since it was introduced. Avoid stress. Avoid excessive tiredness.(Workout, but don't overexert to the point that it takes time to recover.) Good diet, like everyone else has said. Here is the weird part. This is a pretty rare disease. She and 2 of her friends left Southern CA to go to Minnesota for college. All 3 wound up with MS, so here is my question. Did your wife grow up in a very temperate/warm climate and then spend a decent amount of time in the cold? Some researchers have treories about this. Just curious. |
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Quoted: Whats considered recent LOL... Our only child is 3. We are lucky in the sense that she has pretty good insurance, and at this stage in the game they tell her she has regressive remitting kind (is that right) ? Praise the lord (not christian so that means a lot) that she has that kind. She can easily go 30+ years relatively normally if the meds work. My Dad had the bad kind and the first 2-3 years were good and then one day he couldn't see anymore, a couple months later he couldn't walk and about a year later he could barely move (voluntarily, but his body would move all by its self, and he couldn't do anything about it), then he got an infection and passed on. All of this happened in less than 5 years and he passed away the day AFTER my moms birthday at 62, I'm pretty sure he kept going not to ruin my moms birthday for the rest of her life. His passing was a blessing in the end since all he could do is moan in pain for the last ~6 months. I'm not telling you this to scare you I'm telling you this because the relapsing remitting kind is Way Way Way better to have then the bad kind. As other have mentioned she could be fine for many many years, hell she could even outlive you  .Good luck bro and keep her happy, I don't know why but it really helps to keep the symptoms at bay. And oh yeah, Avonex is expensive as shit so lets hope Obummercare covers it |
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My mom was diagnosed with RRMS at age 39 back when they knew nothing about it and had no drugs or therapies.(Thank AIDS research for the current leaps.) She is now 72 and is still walking, so a somewhat normal life is VERY possible. She has taken Betainterferon since it was introduced. Avoid stress. Avoid excessive tiredness.(Workout, but don't overexert to the point that it takes time to recover.) Good diet, like everyone else has said. Here is the weird part. This is a pretty rare disease. She and 2 of her friends left Southern CA to go to Minnesota for college. All 3 wound up with MS, so here is my question. Did your wife grow up in a very temperate/warm climate and then spend a decent amount of time in the cold? Some researchers have treories about this. Just curious. We have always lived in TN... And the Avenox is pricey, but the reps seem very informative an helpful.. They seem to think they can put us on a payment plan where it cost us about 50 a month.. This month they sent us month supply for free.. |
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Sorry to hear about your wife's diagnosis. What was the presenting symptom? At least they have been making progress with the treatments.
I was going to write this in a PM, but the info may benefit others too. Few people know that I have MS and have been on Avonex since 2004. The neurologist that I see tells me that I should expect to be taking pills instead of the shots within a year or two. We'll see if the FAA approves the new drugs. Yes, you can have MS and obtain a class 3 pilot's medical certificate. I have to submit an evaluation from the neuro and they only give me one year at a time instead of the usual two. As for the Avonex, I don't currently have any side effects. However, the first time I took it was the worst night of my life and I seriously considered a trip to the ER. I was shaking uncontrollably to the point that walking was difficult and had a hell of a fever that I couldn't bring down. The nurse, who visited my home to assist/instruct me with the first shot, said that if you don't feel any side effects within a couple hours, then you're one probably of the lucky ones. That wasn't the case with me. It took something like 5 hours to hit (about 11:00 PM), and I finally was able to fall asleep about 10:00 AM the next day. They should tell you not to make plans the day following your first shot. A bit of good news though: The second time was nothing like the first. Here is what I learned: Many people, including me, tolerate the powdered form that you mix yourself much better than the pre-filled syringes. From what I heard, Biogen tried to phase out the older powdered form after introducing the pre-filled but some patients raised hell. If you do use the pre-filled syringes, take them out of the refrigerator as early as possible. At the time I started you were supposed take it out of the refrigerator for no more than 8 hours before use. I think that time has been has increased. One mistake was listening to the nurse that said 1/2 hour was good enough. I learned that taking the Avonex out of the refrigerator for only an hour or two meant that I'd get a fever and the shakes, but it was never anything like the first night. If it was out the full 7-8 hours, it was much easier to tolerate and I'd sleep through any side effects. There must be a preservative or something in it that breaks down at room temperature. With the powdered form, I take it out of the refrigerator a week ahead of time. The powdered form is much easier to travel with too. In fact, that is why I tried it. Now I take it before bed, pop a couple Advils just in case, and if anything happens I sleep through it. I wake up feeling fine. If your wife's presenting symptom was sensory (vision, hearing, numbness, etc), instead of loss of muscle strength that is supposed to be a good sign. My first symptom was blurry vision that would get worse with heat. It was the weirdest thing! I'd wake up and the eye was fine. Then I'd start walking around, take a shower, etc and it would get a little blurry. A cup of coffee made a noticeable difference for a few minutes. But when I went running, the eye became pretty much useless until I'd sit down and cool off. It never occurred to me that heat was doing it so I thought it was a blood pressure thing. That scared the hell out of me. I kept going back to my doctor and a couple different eye doctors until one of them finally realized what was going on. 30 years ago, a diagnosis of MS meant that you'd probably go downhill and end up needing constant care. It is not like that anymore thanks to the ABC drugs. My neuro says that he doesn't have one MS patient in a nursing home these days. I've been told the people with MS who stay active do much better than those who are couch potatoes. 7 years into it and I still ski, fly, ride a motorcycle, hunt, etc. Having MS is something that I don’t think about that much. Good luck! I hope your wife has many symptom free years. Feel free to PM with any questions and I'll try to answer. |
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I just had a bought of Optic Neuritis about 9 months ago and went for an MRI and they found no lesions on my brain yet.I went almost completely blind in my left eye for a few weeks,and my vision came back but it left a blurry spot on the left of my vision and my depth perception is off .Another symptom I always have is numb fingers and toes and have been wondering why they were numb for a few years. Went to two Neurologists and they told me they think it's the start of M.S. So I'm just waiting for the other shoe to drop to see if it's will give me another bought of some fucked up symptoms.
I have been reading up on M.S. like crazy and every body gets different symptoms so it's a toss up of how bad you might get.I'm turning 49 in a couple of days and my health insurance sucks and I'm still paying off my last MRI so from what I can tell I'm going to have a lot of fun in my golden years.
I have found a good site that's like the AR15 of M.S. so you and your wife might like to take a look at it.http://www.msworld.org/forum/ One other thing is she was diagnosed with the disease so treatment can start, a lot of people are not diagnosed for years so they don't get the treatment they need.That's the boat I'm in right now so I'm taking it day by day. 
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| Got DX'd in 2009 at age 42 after a bought of numbness from the waist down. MRI showed very minor lesions in the brain and lesions in the c-spine and l4-5 region. The spinal regions are sites of prior injury. The loss of sensation lasted about 16 days, during which I still had full balance, full strength and normal mobility it just felt weird. I've been on Copaxone since June 2009 and I have had no other issues, MRI in in Jul 2010 showed same or less lesions as I can't see them. I am also fortunate that I have no other MS issues. I find the Copaxone tolerable but I grow tired of the injections, it would be nice to have an oral med. I still suffer from the thought that I might not really have it, but the treatment is relatively benign. Good luck with your wife.. |
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get a second and third opinion if you can. having lesions doesnt mean you have ms.
please do before taking any of the interferon medications that can make your health worse than the illness itself. did the Dr put your wife on a steroid iv during a flareup? copaxone is the least toxic of the 4 injections. feels like a bee sting. |
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get a second and third opinion if you can. having lesions doesnt mean you have ms. please do before taking any of the interferon medications that can make your health worse than the illness itself. did the Dr put your wife on a steroid iv during a flareup? copaxone is the least toxic of the 4 injections. feels like a bee sting. Were you responding to me?? If not sorry.. Did the 2nd opinion, MRI + numbness is considered definetive I'm told. I nearly refused the Copaxone, I won't do any of the interferon's with significan other issues. Doc did not recommend methyl-prednisone.. |
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I just had a bought of Optic Neuritis about 9 months ago and went for an MRI and they found no lesions on my brain yet.I went almost completely blind in my left eye for a few weeks,and my vision came back but it left a blurry spot on the left of my vision and my depth perception is off .Another symptom I always have is numb fingers and toes and have been wondering why they were numb for a few years. Went to two Neurologists and they told me they think it's the start of M.S. So I'm just waiting for the other shoe to drop to see if it's will give me another bought of some fucked up symptoms. I have been reading up on M.S. like crazy and every body gets different symptoms so it's a toss up of how bad you might get.I'm turning 49 in a couple of days and my health insurance sucks and I'm still paying off my last MRI so from what I can tell I'm going to have a lot of fun in my golden years.
I have found a good site that's like the AR15 of M.S. so you and your wife might like to take a look at it.http://www.msworld.org/forum/ One other thing is she was diagnosed with the disease so treatment can start, a lot of people are not diagnosed for years so they don't get the treatment they need.That's the boat I'm in right now so I'm taking it day by day. try not to read a lot of the stuff on the internet that has to do with ms. sometimes it is a diagnosis of convenience when they cant find anything else. once you are diagnosed with it and it is not ms your life will be hell. go to an expert on ms. |
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get a second and third opinion if you can. having lesions doesnt mean you have ms. please do before taking any of the interferon medications that can make your health worse than the illness itself. did the Dr put your wife on a steroid iv during a flareup? copaxone is the least toxic of the 4 injections. feels like a bee sting. Were you responding to me?? If not sorry.. Did the 2nd opinion, MRI + numbness is considered definetive I'm told. I nearly refused the Copaxone, I won't do any of the interferon's with significan other issues. Doc did not recommend methyl-prednisone.. it was for the op, but really for any poster with the disease. |