Aa
Muscle relaxers
I have been on Baclofen for a week now. It is helping but I am so groggy during the day.
I am only on 10mg at night. Good thing because I would not be able to function on more.
I have noticed I have a much easier time urinating....sorry. But I can actually GO!
Will the groggy feeling I have during the day go away? I know it is a side effects and am hoping it does not last long.
LA
I am only on 10mg at night. Good thing because I would not be able to function on more.
I have noticed I have a much easier time urinating....sorry. But I can actually GO!
Will the groggy feeling I have during the day go away? I know it is a side effects and am hoping it does not last long.
LA
Hi, it's me Dave.... You asked that I start my own discussion.. I am not sure how to do that, I would really like to as I am not sure if you are seeing my messages. I have many questions to ask and I think that you would be a great help. Never know... maybe I could help you..I would like the opportunity to try.
I have one burning issue and it is something I am haviing difficulties coming to terms with.
I usually walk with quite a bad limp, my arm and hand are pretty much useless after only a short period of any kind of activity. My memory and other brain functions are acting up too.
My job was demanding and I closed the door to my office on the 24th of January. I was on short term disability until the 24th of May. I am now on long term disability. I have not been sick in 27 years of employment. Literally a day or two here and there but that's it. There is nothing recognizable about my life anymore.
I know that I could not perform my job but that is not the only reason I stopped work.
My wife wants my quality of life to stay in-tact for as long as possible. She said " I would rather have you like this for 10 years then for only 5 if going back to work could even possibly causes the progression to speed up. Also ....... here comes the ego. The last time I went into my place of work to sit with the HR dept I sat in my car for about 1 hour before I could gather the nerve to go inside and face all the people have worked with for over 19 years. I think that this is a shallow way of thinking but I really cannot help it.
Sorry for the sob story.........ps... I talked about the progression to my left side in a letter I sent the other evening as you asked, did you see it?....thanks.....Dave
I have one burning issue and it is something I am haviing difficulties coming to terms with.
I usually walk with quite a bad limp, my arm and hand are pretty much useless after only a short period of any kind of activity. My memory and other brain functions are acting up too.
My job was demanding and I closed the door to my office on the 24th of January. I was on short term disability until the 24th of May. I am now on long term disability. I have not been sick in 27 years of employment. Literally a day or two here and there but that's it. There is nothing recognizable about my life anymore.
I know that I could not perform my job but that is not the only reason I stopped work.
My wife wants my quality of life to stay in-tact for as long as possible. She said " I would rather have you like this for 10 years then for only 5 if going back to work could even possibly causes the progression to speed up. Also ....... here comes the ego. The last time I went into my place of work to sit with the HR dept I sat in my car for about 1 hour before I could gather the nerve to go inside and face all the people have worked with for over 19 years. I think that this is a shallow way of thinking but I really cannot help it.
Sorry for the sob story.........ps... I talked about the progression to my left side in a letter I sent the other evening as you asked, did you see it?....thanks.....Dave
Hi, Dave, I did answer your question before about the wiggly feeling. My MS neuro who does a lot of MS research was very clear that RLS is more common in the MS population than in the general population. We see RLS all the time here in people with MS. I strongly believe your "night wiggles are RLS and should be treated as such. It really doesn't matter if they are part of the MS.
RLS often involves all four limbs or any combination. There is no reason it can't involve the trunk also. Many neuros are now calling it Restless Limb Syndrome.
Welcome to the forum. I am the local unoffical doctor in the group. I also have RLS (all four limbs) and have MS.
I believe what the neuro meant when he expected you not to have much change is that as PPMS progresses, there are less and less inflammatory attacks, and so there are often fewer and fewer lesions. What is happening mostly is called direct axonal degeneration. This means there is a process of direct death of the nerves in the brain and spine without the process of inflammation and demyelination. The major thing seen later on in PPMS is brain and spine atrophy and the development of "Black Holes" in the brain that are mainly seen on the images that are called T1.
There is an article in the Health Pages that discusses how MRIs show lesions. It is the first one listed and the most often viewed.
I am astounded, but not surprised that it took 15 years for you to get a diagnosis. When people don't show the typical relapse and remit, a lot of doctors won't even consider MS. This is unfortunate because PPMS makes up about 15% of all MS patients. Were doctors trying to make the diagnosis or did they brush you off? We have a few people here on the forum with this diagnosis and at least one in whom I suspect it, but the doctors won't give him the time of day.
I also am surprised that he didn't get an MRI of your spine, because spinal lesions are extremely common in PPMS.
Another test that might give some information about any brain atrophy (shrinking) is a test called OCT - Optical Coherence Tomography. It can see atrophy of the optic nerve and they have found that this correlates well with increasing disability, which is what you are describing. The test isn't widely available yet, but some of our members have had it and I will be tested this fall.
I have a question for you. PPMS most often affects both legs most severely. Are you saying that your right leg and arm were most affected and now it is affecting your right side? If so, that is unusual and is exactly what is happening to me.
I'll be interested in hearing your responses. Why don't you start your own discussion and so we all can find you and you're not buried here in this thread.
Quix
RLS often involves all four limbs or any combination. There is no reason it can't involve the trunk also. Many neuros are now calling it Restless Limb Syndrome.
Welcome to the forum. I am the local unoffical doctor in the group. I also have RLS (all four limbs) and have MS.
I believe what the neuro meant when he expected you not to have much change is that as PPMS progresses, there are less and less inflammatory attacks, and so there are often fewer and fewer lesions. What is happening mostly is called direct axonal degeneration. This means there is a process of direct death of the nerves in the brain and spine without the process of inflammation and demyelination. The major thing seen later on in PPMS is brain and spine atrophy and the development of "Black Holes" in the brain that are mainly seen on the images that are called T1.
There is an article in the Health Pages that discusses how MRIs show lesions. It is the first one listed and the most often viewed.
I am astounded, but not surprised that it took 15 years for you to get a diagnosis. When people don't show the typical relapse and remit, a lot of doctors won't even consider MS. This is unfortunate because PPMS makes up about 15% of all MS patients. Were doctors trying to make the diagnosis or did they brush you off? We have a few people here on the forum with this diagnosis and at least one in whom I suspect it, but the doctors won't give him the time of day.
I also am surprised that he didn't get an MRI of your spine, because spinal lesions are extremely common in PPMS.
Another test that might give some information about any brain atrophy (shrinking) is a test called OCT - Optical Coherence Tomography. It can see atrophy of the optic nerve and they have found that this correlates well with increasing disability, which is what you are describing. The test isn't widely available yet, but some of our members have had it and I will be tested this fall.
I have a question for you. PPMS most often affects both legs most severely. Are you saying that your right leg and arm were most affected and now it is affecting your right side? If so, that is unusual and is exactly what is happening to me.
I'll be interested in hearing your responses. Why don't you start your own discussion and so we all can find you and you're not buried here in this thread.
Quix
I am on Baclofen. I did have the groggy mornings and a difficult time getting going but I am so up and down as each day passes I don't know what is causing what.. or is everything just the nature of the disease. I am confused about the RLS.. I was told that this is not a part of MS by my Doc. Why then is this wierd wiggly terrible feeling in my right leg, right side, right arm, should and sometimes in both sides. I think I know what RLS must be but I don't think it is what I am experiencing. This feeling hits hard and can keep me awake for several days. Normally awake every night until about 3 or 4 am, then I will drift off. Is anyone out there in the same boat? Here is another question...... I had my second MRI a few weeks ago. I have Primary Progressive and I believe have been afflicted with this for at least 15 years before the diagonisis in January this year. My first MRI reveiled the lesions on the brain and some on my spine.
The second MRI was only taken of my brain. The doctor said there as little change and this was what he expected. Is this the way PPMS behaves ? and is this that he meant by "this is what I expected" ? My brother was with me for this meeting and he took the comment as good news but I cannot help but think that it was not really that great. I am also wondering why he did not repeat the MRI of the spine. My condition is degrading noticably as each week passes. This was affecting my right side and leaving my left alone only a few months ago is now starting to affect my left side and I am having increasing difficulties with my breathing and the " night wiggles"..... I am new to this and I am just fishing for some answers... maybe someone with similar problems can help me with some insight.....
Thanks
Dave
The second MRI was only taken of my brain. The doctor said there as little change and this was what he expected. Is this the way PPMS behaves ? and is this that he meant by "this is what I expected" ? My brother was with me for this meeting and he took the comment as good news but I cannot help but think that it was not really that great. I am also wondering why he did not repeat the MRI of the spine. My condition is degrading noticably as each week passes. This was affecting my right side and leaving my left alone only a few months ago is now starting to affect my left side and I am having increasing difficulties with my breathing and the " night wiggles"..... I am new to this and I am just fishing for some answers... maybe someone with similar problems can help me with some insight.....
Thanks
Dave
How do you know when you are getting enough? Should I expect my spasms to be completely gone or just get them to a tolerable level?
I think I also have RLS. My mom was diagnosed with RLS. She is on one of the meditations advertised for it.
I noticed an improvement in RLS symptoms when I started Trileptal. And now even more relief with Baclofen.
Before medication it was so bad it just wanted to climb the wall! I had such a difficult time sitting to watch TV or ride any long distance. I stayed on my feet a lot during the day because it was uncomfortable to sit.
I used to think my husband was messing our bed up at night! HA!! But now that I have started taking my medications our bed and so much neater in the morning.
The sheets aren't all the way pulled off. Why I ever thought it was my husband doing it is beyond me.
The sheets were always off the bed on MY side. I just didn't realize I was the one doing it.
I am resting better but I want to sleep all day right now. I am sure the heat and humidity is not making it any better.
I have always liked the summer months but I think I might be switching to a winter person instead!
Guess I don't have to move to Florida to be happy now. :-)
LA
I think I also have RLS. My mom was diagnosed with RLS. She is on one of the meditations advertised for it.
I noticed an improvement in RLS symptoms when I started Trileptal. And now even more relief with Baclofen.
Before medication it was so bad it just wanted to climb the wall! I had such a difficult time sitting to watch TV or ride any long distance. I stayed on my feet a lot during the day because it was uncomfortable to sit.
I used to think my husband was messing our bed up at night! HA!! But now that I have started taking my medications our bed and so much neater in the morning.
The sheets aren't all the way pulled off. Why I ever thought it was my husband doing it is beyond me.
The sheets were always off the bed on MY side. I just didn't realize I was the one doing it.
I am resting better but I want to sleep all day right now. I am sure the heat and humidity is not making it any better.
I have always liked the summer months but I think I might be switching to a winter person instead!
Guess I don't have to move to Florida to be happy now. :-)
LA
I did start out on a titrated dose. 10 mg. at first then over a month worked up to 3-10 mg. tablets per night.
I feel better knowing it is not my imagination! I don't have to struggle, I can just GO.
I am more comfortable now that I am on this medication. I have read this is a medication that is titrated so I am no sure if this is the dose I'll stay at or not.
Heather, Did you start out on a lower dose? At the dose you are on I think I'd be like jello all over the floor!
La
I am more comfortable now that I am on this medication. I have read this is a medication that is titrated so I am no sure if this is the dose I'll stay at or not.
Heather, Did you start out on a lower dose? At the dose you are on I think I'd be like jello all over the floor!
La
I am on Baclofen. I take 2-10mg. tablets during the day and three 10mg. tablets at night. It works well and helps with my sleep. The daytime dosage still causes me fatigue.
It's a hit or miss thing with Baclofen. Some people will experience the fatigue, but less profoundly as time passes. My doctor is trying to get me up to 60 mgs. total per day. It's a good drug for the spasms and I find that I do not have to take as much pain medication, when I can remember to take the Baclofen.
The nighttime dosage is a god-send for me. You would think that it would help with my Restless Leg Syndrome, but nothing seems to stop that.
I also notice that I piddle and move my bowels much more easily, since being on this dosage. After all, it's a "muscle" relaxant. So in that regard, it's a triple blessing.
You know you are on too high of a dose, when you feel alot of weakness in your legs. You need some spasicity to walk. But it's easy to adjust the doaage. You may find with use in the long term, that you will be able to tolerate a higher dose. I have taken about every other muscle relaxant on the market and have found none better for me, than good old Baclofen.
Hope you continue to feel better. Am glad to hear that it's helping your spasms. That's good news sweetheart and I know it's a big relief for you to have found something that actually works.
Hugs,
Heather
It's a hit or miss thing with Baclofen. Some people will experience the fatigue, but less profoundly as time passes. My doctor is trying to get me up to 60 mgs. total per day. It's a good drug for the spasms and I find that I do not have to take as much pain medication, when I can remember to take the Baclofen.
The nighttime dosage is a god-send for me. You would think that it would help with my Restless Leg Syndrome, but nothing seems to stop that.
I also notice that I piddle and move my bowels much more easily, since being on this dosage. After all, it's a "muscle" relaxant. So in that regard, it's a triple blessing.
You know you are on too high of a dose, when you feel alot of weakness in your legs. You need some spasicity to walk. But it's easy to adjust the doaage. You may find with use in the long term, that you will be able to tolerate a higher dose. I have taken about every other muscle relaxant on the market and have found none better for me, than good old Baclofen.
Hope you continue to feel better. Am glad to hear that it's helping your spasms. That's good news sweetheart and I know it's a big relief for you to have found something that actually works.
Hugs,
Heather
Hi,funny thing, I was just going to post a question if anyone had the urinating more easier side effect! I notice that I went so easy on muscle relaxers! It was such a wonderful feeling! I am on Flexeril, no Dx but it did the same great and awsome thing!
I would cath and it would be way less left in! Yippee!!
I sure hope your fatigue goes away. I don't take mine every day, only when needed, but I am very groggy for days after!
Good luck on your fatigue!!!!
cyn
I would cath and it would be way less left in! Yippee!!
I sure hope your fatigue goes away. I don't take mine every day, only when needed, but I am very groggy for days after!
Good luck on your fatigue!!!!
cyn
That is good to know. I really need to stay on it because I have had a lot of relief from spasms.
I am going to hang in there with it for a while. As long as I can get a little nap when I need it I think it will be ok.
LA
I am going to hang in there with it for a while. As long as I can get a little nap when I need it I think it will be ok.
LA
It did the same thing to me but by the 2-3 week of being on it, the tired feeling stopped. Hopefully it will do the same for you.
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