Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 Cookie, You are right...never a dull moment! I'm so sorry you have to go through all this. I'll be praying for you re: the breast cancer. Stiffman syndrome is another similar disease, but I doubt you have that and PLS???? Here is a link for you on the Stiffman Syndrome: http://www.ninds.nih.gov/health_and_medical/disorders/stiffperson_doc ..htm What is Stiff-Person Syndrome? Stiff-person syndrome is a rare progressive neurological disorder characterized by constant painful contractions and spasms of voluntary muscles, particularly the muscles of the back and upper legs. Symptoms may occur gradually, spreading from the back and legs to involve the arms and neck. Symptoms may worsen when the affected individual is anxious or exposed to sudden motion or noise. Affected muscles may become twisted and contracted, resulting in bone fractures in the most severe cases. Individuals with stiff-person syndrome may have difficulty making sudden movements and may have a stiff-legged, unsteady gait. Sleep usually suppresses frequency of contractions. Stiffness may increase and patients may develop a hunched posture (kyphosis) or a swayback (lordosis). Researchers theorize that stiff-person syndrome may be an autoimmune disorder. Other autoimmune disorders such as diabetes, pernicious anemia (a chronic, progressive blood disorder), and thyroiditis (inflammation of the thyroid gland) may occur more frequently in patients with stiff-person syndrome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 sorry to be ignorant, but what is clonus. A Breaux mabreaux@... -- never a dull moment OK...such is life. Yesterday I went to my breast doctor. (I had breast cancer in 1999). She found something on my right breast. That is the one I had surgery on. So, she wanted me to go for a mammo and ultra sound. I went to the breast center today. They examined me prior to the mammo. She couldn't find anything on the right but found something on the left. Then I had my mammo bilaterally rather than only the right. Next week I will get the ultra sound I don't even know what side they are doing that on. Today I went to my neuro. I was exhibiting lots of clonus in both feet. Dr. Neuro said that was more clonus than usual PLSers have. (I don't know where he got this info since I am his only PLS patient). He said I may have " Stiff Person Syndrome " . Has anyone ever heard of this one? I had to get blood work to find out. Whatever it is he said it was treatable. I asked if this would be in place of PLS or in addition to and he said in addition to. He said I can find out more info about it from NORD. He also started me on bacolfen. I have seen alot of posts about that drug but never paid much attention to details, since I wasn't taking it. He started me on 10 mg. The first week I am to take 1/2 tablet in the evening. The second week a full tablet in the evening. The third week 1/2 tablet in the am, full in evening. and continues up until I take one tablet t.i.d. What side effects could I be looking at? I am a little nervous about taking it. Thanks for your response. Cookie **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 , Clonus is a very rapid shaking. It's like when you teeth chatter when you're freezing cold, but with some of us it happens in the feet,legs and maybe elsewhere. Do you experience that? Cookie **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. > sorry to be ignorant, but what is clonus. > > > > A Breaux > > mabreaux@... > > > > -- never a dull moment > > > > OK...such is life. Yesterday I went to my breast doctor. (I had breast > cancer > > in 1999). She found something on my right breast. That is the one I had > > surgery on. So, she wanted me to go for a mammo and ultra sound. I went to > the > > breast center today. They examined me prior to the mammo. She couldn't find > > anything on the right but found something on the left. Then I had my mammo > > bilaterally rather than only the right. Next week I will get the ultra sound > I > > don't even know what side they are doing that on. > > > > Today I went to my neuro. I was exhibiting lots of clonus in both feet. Dr. > > Neuro said that was more clonus than usual PLSers have. (I don't know where > he > > got this info since I am his only PLS patient). He said I may have " Stiff > > Person Syndrome " . Has anyone ever heard of this one? I had to get blood work > > > to find out. Whatever it is he said it was treatable. I asked if this would > be > > in place of PLS or in addition to and he said in addition to. He said I can > > find out more info about it from NORD. > > > > He also started me on bacolfen. I have seen alot of posts about that drug > but > > never paid much attention to details, since I wasn't taking it. He started > me > > on 10 mg. The first week I am to take 1/2 tablet in the evening. The second > > week a full tablet in the evening. The third week 1/2 tablet in the am, full > in > > evening. and continues up until I take one tablet t.i.d. What side effects > > could I be looking at? I am a little nervous about taking it. > > > > Thanks for your response. > > > > Cookie > > > > **************************** > > Man's way leads to a hopeless > > end..God's way leads to an endless > > hope. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 My legs don't do anything any more, but on occasion my arms shake so bad (fast and unpredictable) that they are useless. A Breaux mabreaux@... -- never a dull moment > > > > OK...such is life. Yesterday I went to my breast doctor. (I had breast > cancer > > in 1999). She found something on my right breast. That is the one I had > > surgery on. So, she wanted me to go for a mammo and ultra sound. I went to > the > > breast center today. They examined me prior to the mammo. She couldn't find > > anything on the right but found something on the left. Then I had my mammo > > bilaterally rather than only the right. Next week I will get the ultra sound > I > > don't even know what side they are doing that on. > > > > Today I went to my neuro. I was exhibiting lots of clonus in both feet. Dr > > Neuro said that was more clonus than usual PLSers have. (I don't know where > he > > got this info since I am his only PLS patient). He said I may have " Stiff > > Person Syndrome " . Has anyone ever heard of this one? I had to get blood work > > > to find out. Whatever it is he said it was treatable. I asked if this would > be > > in place of PLS or in addition to and he said in addition to. He said I can > > find out more info about it from NORD. > > > > He also started me on bacolfen. I have seen alot of posts about that drug > but > > never paid much attention to details, since I wasn't taking it. He started > me > > on 10 mg. The first week I am to take 1/2 tablet in the evening. The second > > week a full tablet in the evening. The third week 1/2 tablet in the am, full > in > > evening. and continues up until I take one tablet t.i.d. What side effects > > could I be looking at? I am a little nervous about taking it. > > > > Thanks for your response. > > > > Cookie > > > > **************************** > > Man's way leads to a hopeless > > end..God's way leads to an endless > > hope. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 Hi Cookie, I am sorry for the stress you are experiencing--waiting to hear about another possible breast malignancy. Mine was in Dec. 2000. As I understand it, a reoccurrence on the side that was radiated is highly unlikely so I hope that will comfort you. Was your newest mammogram a CT (computerized technology) mammogram? Not all facilities offer it, but it is the most accurate and sensitive kind. The computer reading is far less likely to give a false report than a person (radiologist). By the way, my right mammogram always shows a questionable area because I have a combination hematoma/scar tissue bundle that has been encapsulated by the radiation. Perhaps you have some of that, too. Waiting and wondering is so hard. Let's just hope and pray that it's a false alarm. As for the Baclofen, I've been taking 10 mg twice a day since last November. Without a doubt, it has made me weaker. Last night I took a tablet about 2 hours before bedtime because I was very spastic. I had the most horrible, vivid, turbulent dreams that I ever experienced. I'll never do that again. In general, I can only tolerate very small doses compared with what other PLSers have reported. I agree with Ronnie--you should try to take the smallest amount possible. There is nothing to be gained from over-medication, only ill effects. Finally, about the clonus. The best treatment for it is stretching those muscles. A good neuro PT should be able to give some hands on therapy and tell you what to do on your own. Most importantly, stress makes all our symptoms worse and I guess you've been having some of that, haven't you? I tend to not agree with the doctor who told you that you have Stiff Man Syndrome. Dolores never a dull moment > > OK...such is life. Yesterday I went to my breast doctor. (I had breast cancer > in 1999). She found something on my right breast. That is the one I had > surgery on. So, she wanted me to go for a mammo and ultra sound. I went to the > breast center today. They examined me prior to the mammo. She couldn't find > anything on the right but found something on the left. Then I had my mammo > bilaterally rather than only the right. Next week I will get the ultra sound. I > don't even know what side they are doing that on. > > Today I went to my neuro. I was exhibiting lots of clonus in both feet. Dr. > Neuro said that was more clonus than usual PLSers have. (I don't know where he > got this info since I am his only PLS patient). He said I may have " Stiff > Person Syndrome " . Has anyone ever heard of this one? I had to get blood work > to find out. Whatever it is he said it was treatable. I asked if this would be > in place of PLS or in addition to and he said in addition to. He said I can > find out more info about it from NORD. > > He also started me on bacolfen. I have seen alot of posts about that drug but > never paid much attention to details, since I wasn't taking it. He started me > on 10 mg. The first week I am to take 1/2 tablet in the evening. The second > week a full tablet in the evening. The third week 1/2 tablet in the am, full in > evening. and continues up until I take one tablet t.i.d. What side effects > could I be looking at? I am a little nervous about taking it. > > Thanks for your response. > > Cookie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 Dear Cookie, These dr's can drive us crazy. It is frustrating. I'm sorry.. I will keep you in my prayers . And the baclofen is pretty helpful. It may make you a bit loosey goosey at first. I took Klonopin, Zanaflex and Baclofen And I think it is the most effective and safest of them. never a dull moment > > > > OK...such is life. Yesterday I went to my breast doctor. (I had breast > cancer > > in 1999). She found something on my right breast. That is the one I had > > surgery on. So, she wanted me to go for a mammo and ultra sound. I went to > the > > breast center today. They examined me prior to the mammo. She couldn't find > > anything on the right but found something on the left. Then I had my mammo > > bilaterally rather than only the right. Next week I will get the ultra sound > I > > don't even know what side they are doing that on. > > > > Today I went to my neuro. I was exhibiting lots of clonus in both feet. Dr. > > Neuro said that was more clonus than usual PLSers have. (I don't know where > he > > got this info since I am his only PLS patient). He said I may have " Stiff > > Person Syndrome " . Has anyone ever heard of this one? I had to get blood work > > > to find out. Whatever it is he said it was treatable. I asked if this would > be > > in place of PLS or in addition to and he said in addition to. He said I can > > find out more info about it from NORD. > > > > He also started me on bacolfen. I have seen alot of posts about that drug > but > > never paid much attention to details, since I wasn't taking it. He started > me > > on 10 mg. The first week I am to take 1/2 tablet in the evening. The second > > week a full tablet in the evening. The third week 1/2 tablet in the am, full > in > > evening. and continues up until I take one tablet t.i.d. What side effects > > could I be looking at? I am a little nervous about taking it. > > > > Thanks for your response. > > > > Cookie > > > > **************************** > > Man's way leads to a hopeless > > end..God's way leads to an endless > > hope. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2003 Report Share Posted April 10, 2003 Cookie: Sorry to hear about everything you are going through right. Just wanted to let you know you are in my thoughts. Jo! never a dull moment > > OK...such is life. Yesterday I went to my breast doctor. (I had breast cancer > in 1999). She found something on my right breast. That is the one I had > surgery on. So, she wanted me to go for a mammo and ultra sound. I went to the > breast center today. They examined me prior to the mammo. She couldn't find > anything on the right but found something on the left. Then I had my mammo > bilaterally rather than only the right. Next week I will get the ultra sound. I > don't even know what side they are doing that on. > > Today I went to my neuro. I was exhibiting lots of clonus in both feet. Dr. > Neuro said that was more clonus than usual PLSers have. (I don't know where he > got this info since I am his only PLS patient). He said I may have " Stiff > Person Syndrome " . Has anyone ever heard of this one? I had to get blood work > to find out. Whatever it is he said it was treatable. I asked if this would be > in place of PLS or in addition to and he said in addition to. He said I can > find out more info about it from NORD. > > He also started me on bacolfen. I have seen alot of posts about that drug but > never paid much attention to details, since I wasn't taking it. He started me > on 10 mg. The first week I am to take 1/2 tablet in the evening. The second > week a full tablet in the evening. The third week 1/2 tablet in the am, full in > evening. and continues up until I take one tablet t.i.d. What side effects > could I be looking at? I am a little nervous about taking it. > > Thanks for your response. > > Cookie > > **************************** > Man's way leads to a hopeless > end..God's way leads to an endless > hope. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Cookie, I had no side affects from baclofen and no help either. I don't respond very well to medications though so you may be entirely different. At least I didn't get dizzy or anything else. Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Cookie, I didn't feel that I gained anything from Baclofen or Zanaflex other than sleep. I guess that didn't hurt me, but I felt like a zombie. My neuro said I wasn't patient enough and didn't allow my body long enough to adjust...I'll agree, I'm not patient with meds since I don't like to take anything. I know I have to take Ditropan and a couple of things for osteoporosis, other than that, I try and convince myself that I don't need it. Good luck and hope for the best. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Cookie, I started out with 1/2 pill three times a day (if I remember) then since I complained they said cut it 1/4 pill. I did but still every time I sat down, I fell asleep. There are worse things than sleep but I couldn't tell it helped with the spasticity. If I felt that it was helping, then I probably would have been more patient. BUT, on the other hand, other people in the group couldn't be without it. I just say, I must be too delicate. All you can do is give it a try and then you'll know how your body reacts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 , So how much of the baclofen did you take? Did you start small and increase? I sure don't want to feel like a zombie. I pick up the script but am so apprehensive to start it. Cookie -- **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. > Cookie, > > I didn't feel that I gained anything from Baclofen or Zanaflex other than > sleep. I guess that didn't hurt me, but I felt like a zombie. My neuro said > I wasn't patient enough and didn't allow my body long enough to adjust...I'll > agree, I'm not patient with meds since I don't like to take anything. I know > I have to take Ditropan and a couple of things for osteoporosis, other than > that, I try and convince myself that I don't need it. > > Good luck and hope for the best. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 Cookie, They put me on Baclofen back in 2000. I couldn't take the med. I couldn't take Zanaflex either.. I got very weak and couldn't think... I probably was given too big of a dose.. Sherry Re: never a dull moment Quote Link to comment Share on other sites More sharing options...
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