Aa
New to the Board
Hello, everyone. My name is Mike and I'm new here. I recently found the board while doing some random "googling." I am in my late thirties, and was diagnosed a little over 5 years ago. My father also had MS.
I originally started getting tingles in my fingertips on one hand that slowly spread up my wrist and forearm. My old doctor had me tested for carpal tunnel, which came back negative. He dismissed my MS concerns out of hand, even though he brought up the topic when he asked if anyone in my family had it. I eventually switched doctors. My new doctor saw me and, although he didn't feel that I had it, decided to have me tested just to put my mind at ease. Apparently, the MRI was pretty conclusive. I was devastated because I had just watched my father die a few months earlier from what I felt were complications attributable to him having MS.
I started on Rebif for the first few years and switched to Copaxone a few years ago. The Copaxone seems to do a better job for me. My exacerbations are generally more rare and not as bad. I get some weakness and numbness, but not what I would consider pain. All in all, I guess I'm lucky. I watched my dad deteriorate and, knock on wood, I have not been nearly as bad as fast. I figure that might be partly because I was DX'd younger and partly that there are medications out that weren't known when he was DX'd.
My biggest complaint is fatigue, both physical and mental. I get physically exhausted much easier. I also seem to have a harder time focusing on things that used to come easy to me and remembering things. I can work on one thing at work, focus deeply, and do it well, But, if I have multiple projects at the same time, and they can't be worked to closure one at a time, I have a hard time focusing on any of them and just mentally drift away.
This is getting pretty long, so I'll leave with one question. I will be going to see my Neuro in a few days and was wondering if anyone had any recommendations for medications to ask about that might help address the mental fatigue? I have narrowed that down as my biggest frustration right now.
If you made it this far, thanks!
Mike
I originally started getting tingles in my fingertips on one hand that slowly spread up my wrist and forearm. My old doctor had me tested for carpal tunnel, which came back negative. He dismissed my MS concerns out of hand, even though he brought up the topic when he asked if anyone in my family had it. I eventually switched doctors. My new doctor saw me and, although he didn't feel that I had it, decided to have me tested just to put my mind at ease. Apparently, the MRI was pretty conclusive. I was devastated because I had just watched my father die a few months earlier from what I felt were complications attributable to him having MS.
I started on Rebif for the first few years and switched to Copaxone a few years ago. The Copaxone seems to do a better job for me. My exacerbations are generally more rare and not as bad. I get some weakness and numbness, but not what I would consider pain. All in all, I guess I'm lucky. I watched my dad deteriorate and, knock on wood, I have not been nearly as bad as fast. I figure that might be partly because I was DX'd younger and partly that there are medications out that weren't known when he was DX'd.
My biggest complaint is fatigue, both physical and mental. I get physically exhausted much easier. I also seem to have a harder time focusing on things that used to come easy to me and remembering things. I can work on one thing at work, focus deeply, and do it well, But, if I have multiple projects at the same time, and they can't be worked to closure one at a time, I have a hard time focusing on any of them and just mentally drift away.
This is getting pretty long, so I'll leave with one question. I will be going to see my Neuro in a few days and was wondering if anyone had any recommendations for medications to ask about that might help address the mental fatigue? I have narrowed that down as my biggest frustration right now.
If you made it this far, thanks!
Mike
Hi Mike
You have already had the pleasure of meeting some really great people on this site and as a newbie dx'd only in March at 46, I have learnt soooooo much about MS in the last few months.
You have seen and witnessed first hand what MS can do and seeing your Dad die from this horrilbe illness must have been very hard. I looked after my mother-in-law for 18 months and she had motor neurone disease. I know this is very different to MS but seeing someone lose control of all their bodily functions and everything in life is a hard thing to do. How long ago did your Dad die and did you have support afterwards.
It is good to hear from you and glad to hear your update..I hope the insurance comes good for you.
With best wishes
Sarah :)
You have already had the pleasure of meeting some really great people on this site and as a newbie dx'd only in March at 46, I have learnt soooooo much about MS in the last few months.
You have seen and witnessed first hand what MS can do and seeing your Dad die from this horrilbe illness must have been very hard. I looked after my mother-in-law for 18 months and she had motor neurone disease. I know this is very different to MS but seeing someone lose control of all their bodily functions and everything in life is a hard thing to do. How long ago did your Dad die and did you have support afterwards.
It is good to hear from you and glad to hear your update..I hope the insurance comes good for you.
With best wishes
Sarah :)
Hopefully the provigil will get quick approval. The insurance companies don't like the off label use, but most will eventually give their blessing. One of these days perhaps the FDA will add MS fatigue to the approved list. I'm sure there have to be studies going on for that purpose.
That job thing really does put us in a quandry - I'm in the same boat.
later , L
That job thing really does put us in a quandry - I'm in the same boat.
later , L
Hi, Mike, and a belated "Welcome"! Another supplement my MS neuro prescribed me is L-Carnitine. She has me taking 1000 mg 2x a day. It works in the mitochondria (the cell's powerhouses) and is said to boost energy. I've been on this only a month. It seemed to work quite well, but maybe this week is a bad week - I'm tired!
Best of luck with the Provigil. I may go that way myself.
Guitar_grrrl
Dx 5/2009
Tysabri
Best of luck with the Provigil. I may go that way myself.
Guitar_grrrl
Dx 5/2009
Tysabri
Hi, everyone. Just wanted to check back in... Saw my doctor today. He prescribed the Provigil, next step is to see if the insurance covers it. He said there may be some back and forth and they may want a note from him or something like that. He also sent me to do some bloodwork to test my D and B12 levels. I'm interested in seeing those results.
Lulu, regarding the depression discussion, I have had that talk with my doctors. I believe that I have a pretty mild form of depression which, when coupled with a fairly stressful job and fear of possible unemployment, definitely contributes to my fatigue. (Jobs, can't live with 'em, can't live without 'em?) Right now, I'm sticking with it because I am physically able and I'm saving money for future flexibility. My wife is in school and the hope is that, when she finishes, she will be able to get a decent job and we will be able to re-evaluate our options. We'll be ok.
Thanks, everyone for this awesome discussion board
Lulu, regarding the depression discussion, I have had that talk with my doctors. I believe that I have a pretty mild form of depression which, when coupled with a fairly stressful job and fear of possible unemployment, definitely contributes to my fatigue. (Jobs, can't live with 'em, can't live without 'em?) Right now, I'm sticking with it because I am physically able and I'm saving money for future flexibility. My wife is in school and the hope is that, when she finishes, she will be able to get a decent job and we will be able to re-evaluate our options. We'll be ok.
Thanks, everyone for this awesome discussion board
COMMUNITY LEADER
Hi Mike,
I just wanted to welcome you to our little corner, great place, great people!
Cheers......JJ
I just wanted to welcome you to our little corner, great place, great people!
Cheers......JJ
Hi Mike,
Let me add to the welcomes here and jump in on another part of your post - the emotional fatigue that can accompany living with this MonSter can weigh us down even more than the physical and mental fatigue.
Watching your father struggle with MS, you have seen the very dark side of this disease, and that has to be a difficult future to envision for yourself. The face of MS has changed so much in the past 20 years or so. Those of us who had relatives with MS before us have to keep in mind they didn't have these treatment options available. We face a different future than our fathers (or in my case an Aunt).
Depression is a common problem with MS - whether it is organic or situational or a combination of both - about 80% of us ackowledge depression in our lives. I'm wondering if you have had this discussion with your doctors?
Finding peace with this and getting on with living takes a lot of effort and energy some days. I'm not suggesting all of your problems are this, but it certainly might be an added factor.
I wish you luck with the provigil - the people on it here have nothing but positives to say (except for the cost! LOL).
We're here if you need more ideas or just want to hang out - this really is an exceptional community.
best well, Lulu
Let me add to the welcomes here and jump in on another part of your post - the emotional fatigue that can accompany living with this MonSter can weigh us down even more than the physical and mental fatigue.
Watching your father struggle with MS, you have seen the very dark side of this disease, and that has to be a difficult future to envision for yourself. The face of MS has changed so much in the past 20 years or so. Those of us who had relatives with MS before us have to keep in mind they didn't have these treatment options available. We face a different future than our fathers (or in my case an Aunt).
Depression is a common problem with MS - whether it is organic or situational or a combination of both - about 80% of us ackowledge depression in our lives. I'm wondering if you have had this discussion with your doctors?
Finding peace with this and getting on with living takes a lot of effort and energy some days. I'm not suggesting all of your problems are this, but it certainly might be an added factor.
I wish you luck with the provigil - the people on it here have nothing but positives to say (except for the cost! LOL).
We're here if you need more ideas or just want to hang out - this really is an exceptional community.
best well, Lulu
Hello, everyone, and thanks for the welcome and all the info. Gives me some stuff to look into and ask my doc about. I hate to take extra medications, but I am really getting to the point that I'm ready to ask for something to help. Between the other thread that was linked above and Quixotic1's description, I think I'll ask the Neuro about Provigil.
I do try to exercise. I've gotten to the point where I wake up early almost every day and go for a 20-30 minute walk before work. If I don't go before work, I hardly ever do anything after work because I'm just exhausted (probably more mentally than physically, but the end result is the same.)
Thanks again,
Mike
I do try to exercise. I've gotten to the point where I wake up early almost every day and go for a 20-30 minute walk before work. If I don't go before work, I hardly ever do anything after work because I'm just exhausted (probably more mentally than physically, but the end result is the same.)
Thanks again,
Mike
Hi, Iamquix.
Welcome. I hope you find exactly what you want here. This is a great group to talk to or just to pick brains.
Several drugs have been used for the bone-crushing fatigue. My first indication that the neuro had diagnosed me was when he addressed my fatigue and said, "Far and away the favorite drug among my patients is Provigil." (Modenafil). This is a med that is approved for the treatment of Narcolepsy and for Shift-Work Fatigue. It is commonly used off label for the fatigue in MS. Most people tolerate it well, but it can cause a stimulation of the heart (raising the heartrate) and raise the BP as Frank mentioned. I love it and can barely function without at least 100mg. Usual dose is 200mg and max dose is 400mg.
Another med is Amantidine which was developed as an antiviral and then found to be effective in treating some symptoms of Parkinson's Disease (or vice versa). However, it is a pretty good brain stimulator. Side effects can be vivid dreaming, stomach upset, or occasionally hallucinations at the beginning of use. These are not serious and go away.
Some doctors have used the meds for ADD. Right along with the severe fatigue, some people have congitive problems which include ADD. So we have seen people on Adderall, Ritalin and the others. These can work, but are all derivatives of amphetamines with the potential problems that these all have.
Exercise helps with fatigue, but the inability to exercise initially, is one of the Catch-22's of MS fatigue. One has to begin incredibly slow and move up in infintissimal steps sometimes.
One's sleep efficiency should also be evaluated. MS can cause disruptions of the sleep pattern and reduce the efficiency of restful sleep. The meds one is one should also be evaluated for being taken at the optimal time.
Basically, I am a big cheerleader for Provigil for those who 1) can tolerate it, 2) can afford it. Some insurance plans will not approve it and it costs arund $10 a tablet. the nice thing is it is a med that you can take and stop and take again. So some people use it only for the days when they HAVE to accomplish stuff. The newest cousin of Provigil is Nuvigil and some of our members are on it.
I hope this helps and I hope you stay with us.
Quix, MD (retired and with MS)
Welcome. I hope you find exactly what you want here. This is a great group to talk to or just to pick brains.
Several drugs have been used for the bone-crushing fatigue. My first indication that the neuro had diagnosed me was when he addressed my fatigue and said, "Far and away the favorite drug among my patients is Provigil." (Modenafil). This is a med that is approved for the treatment of Narcolepsy and for Shift-Work Fatigue. It is commonly used off label for the fatigue in MS. Most people tolerate it well, but it can cause a stimulation of the heart (raising the heartrate) and raise the BP as Frank mentioned. I love it and can barely function without at least 100mg. Usual dose is 200mg and max dose is 400mg.
Another med is Amantidine which was developed as an antiviral and then found to be effective in treating some symptoms of Parkinson's Disease (or vice versa). However, it is a pretty good brain stimulator. Side effects can be vivid dreaming, stomach upset, or occasionally hallucinations at the beginning of use. These are not serious and go away.
Some doctors have used the meds for ADD. Right along with the severe fatigue, some people have congitive problems which include ADD. So we have seen people on Adderall, Ritalin and the others. These can work, but are all derivatives of amphetamines with the potential problems that these all have.
Exercise helps with fatigue, but the inability to exercise initially, is one of the Catch-22's of MS fatigue. One has to begin incredibly slow and move up in infintissimal steps sometimes.
One's sleep efficiency should also be evaluated. MS can cause disruptions of the sleep pattern and reduce the efficiency of restful sleep. The meds one is one should also be evaluated for being taken at the optimal time.
Basically, I am a big cheerleader for Provigil for those who 1) can tolerate it, 2) can afford it. Some insurance plans will not approve it and it costs arund $10 a tablet. the nice thing is it is a med that you can take and stop and take again. So some people use it only for the days when they HAVE to accomplish stuff. The newest cousin of Provigil is Nuvigil and some of our members are on it.
I hope this helps and I hope you stay with us.
Quix, MD (retired and with MS)
Hi Mike,
Welcome to the Forum. As others have said, it's a great place to be. Plenty of good information as well as knowledgeable and compassionate people. I've been a member of the community since May this year and I am so glad to have discovered it.
So sorry to hear about your father and the fact that you have to live with this $%#@(*& disease. Sounds as if you have “learned” to cope quite well. As you probably already know, keeping a positive psyche is paramount in staying well.
One of the symptoms I experience is a crushing fatigue (at least on most days.) Of all the symptoms I have, if I were given a choice to switch one, I would keep the chronic pain and get rid of the fatigue. It certainly affects all spheres of life in such a negative manner. I take Amantadine, 200 MG. Some days it seems to be more effective than others, although hard for me to articulate as to why (I have not yet had the opportunity to discuss this with my neuro.)
The other drug I have heard of that some people I know have had good success with is Nuvigil (Armodafinil). I can't take it because I transition in and out of A-fib and have high BP which is not easily controlled.
Anyway, welcome to the community, and hope to “see you around” so-to-speak.
Frank
Welcome to the Forum. As others have said, it's a great place to be. Plenty of good information as well as knowledgeable and compassionate people. I've been a member of the community since May this year and I am so glad to have discovered it.
So sorry to hear about your father and the fact that you have to live with this $%#@(*& disease. Sounds as if you have “learned” to cope quite well. As you probably already know, keeping a positive psyche is paramount in staying well.
One of the symptoms I experience is a crushing fatigue (at least on most days.) Of all the symptoms I have, if I were given a choice to switch one, I would keep the chronic pain and get rid of the fatigue. It certainly affects all spheres of life in such a negative manner. I take Amantadine, 200 MG. Some days it seems to be more effective than others, although hard for me to articulate as to why (I have not yet had the opportunity to discuss this with my neuro.)
The other drug I have heard of that some people I know have had good success with is Nuvigil (Armodafinil). I can't take it because I transition in and out of A-fib and have high BP which is not easily controlled.
Anyway, welcome to the community, and hope to “see you around” so-to-speak.
Frank
Welcome to the forum! Glad to have you here.
I have no personal experience with meds to treat fatigue but others have. Hopefully someone will chime in here. Below is a link from another thread regarding exactly what you are asking about. I hope it helps:
http://www.medhelp.org/posts/Multiple-Sclerosis/MS-fatigue-and-stimulants/show/969772
Again welcome,
Ren
I have no personal experience with meds to treat fatigue but others have. Hopefully someone will chime in here. Below is a link from another thread regarding exactly what you are asking about. I hope it helps:
http://www.medhelp.org/posts/Multiple-Sclerosis/MS-fatigue-and-stimulants/show/969772
Again welcome,
Ren
Welcome to the forum! This is an amazing forum with amazing people who are so stuffed with knowedge its way beyond comparison to stuffed grape leaves..ok that was humor...probably not funny..anyway. I have not much knowedge to offer as I am pretty new myself, but ill try.
Im sorry what you had to go through with your dad, and what your dad had to go through. It must have been very difficult, watching a parent struggle, and im sorry. It is good though that your neuro tested you even though he thought it wasnt true. That means he is open to suggestions even if he doesnt believe them. You sound in very good hands.
I really dont know about any medications with mental fatigue. I was on Amitriptyline there for awhile. It is an antidepressent but if taken only at night it is used as a sleep aide and helps with nerve issues as well (dont qoute me on the nerve part..my mind is foggy). It helped me alot with sleeping at night and might help with mental fatigue (better sleep, better mind).
I know there are also herbal supplements over the counter ..im gonna reach out and say ..fish oil? Im not sure..again my mind is foggy...BUT i do know there are some out there..your local store normally carries a book that customers can look at to choose which is best. Mind you...before you take these I would consult your nuero to make sure they will not counteract your other meds and if he agrees perhaps ask him what he suggests.
You have my support and are in my thoughts if you need anything im just a pm away,
Inny
Im sorry what you had to go through with your dad, and what your dad had to go through. It must have been very difficult, watching a parent struggle, and im sorry. It is good though that your neuro tested you even though he thought it wasnt true. That means he is open to suggestions even if he doesnt believe them. You sound in very good hands.
I really dont know about any medications with mental fatigue. I was on Amitriptyline there for awhile. It is an antidepressent but if taken only at night it is used as a sleep aide and helps with nerve issues as well (dont qoute me on the nerve part..my mind is foggy). It helped me alot with sleeping at night and might help with mental fatigue (better sleep, better mind).
I know there are also herbal supplements over the counter ..im gonna reach out and say ..fish oil? Im not sure..again my mind is foggy...BUT i do know there are some out there..your local store normally carries a book that customers can look at to choose which is best. Mind you...before you take these I would consult your nuero to make sure they will not counteract your other meds and if he agrees perhaps ask him what he suggests.
You have my support and are in my thoughts if you need anything im just a pm away,
Inny
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