Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 Hi Folks This is all new to me but I would like to find someone to communicate with me. My name is Pat and I love in upstate NY. I am a 57 year old female. For the past two years I have experienced facisculations on the legs. I have hyperreflexes. I had an MRI, normal. I had an emg, normal. I have had a MR Spectroscopy with a mild abnormality. I have small tic like spasms anywhere on my body, in no related time or order. I call them " zingers " . All blood work has come back normal. The doctors are stumped. They are starting to treat me for PLS. They put me on 2000 Vitamin C, 1200 Vitamin E,, beta carotene and 200 mg of celebrex twice a day. I will have a CT on Friday of chest, pelvis and abdomen. Can't anyone give me some insight or encouragement? God Bless you all Pat mrsbill@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Pat, I am 55, and was diagnosed 3 years ago. All my tests came back normal with the exception of the MRI of my head. I was diagnosed at Mayo Clinic in Rochester, MN. Unlike so many others on this wonderful list, I was diagnosed fairly quickly. My neurologist is quite familiar with PLS, and has a few cases. I have fasciculations like you mentioned, but not very often. My biggest problem is " heavy leg feeling " , fatigue, and muscle cramps and pain. I do not take any meds. I take Ibuprofen for the pain, but not very often. Good luck to you, and I am sure this group will help you a lot. Laurel new " kid " on the block Hi Folks This is all new to me but I would like to find someone to communicate with me. My name is Pat and I love in upstate NY. I am a 57 year old female. For the past two years I have experienced facisculations on the legs. I have hyperreflexes. I had an MRI, normal. I had an emg, normal. I have had a MR Spectroscopy with a mild abnormality. I have small tic like spasms anywhere on my body, in no related time or order. I call them " zingers " . All blood work has come back normal. The doctors are stumped. They are starting to treat me for PLS. They put me on 2000 Vitamin C, 1200 Vitamin E,, beta carotene and 200 mg of celebrex twice a day. I will have a CT on Friday of chest, pelvis and abdomen. Can't anyone give me some insight or encouragement? God Bless you all Pat mrsbill@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Pat, My name is Donna and I have PLS. I have a normal MRI. I have hyperreflexes, and facisculations all over my body. All my blood work was normal, but my spinal fluid was abnormal. They thought I had MS. They sent me to s Hopkins and they dx me as ALS/PLS. It's good to hear from you and I hope you enjoy this group as much as I do. We kinda get off the PLS subject once in a while, and that's the fun part of the group. Take care, Donna > Hi Folks > > This is all new to me but I would like to find someone to communicate with me. > My name is Pat and I love in upstate NY. I am a 57 year old female. > > For the past two years I have experienced facisculations on the legs. I have > hyperreflexes. I had an MRI, normal. I had an emg, normal. I have had a MR > Spectroscopy with a mild abnormality. I have small tic like spasms anywhere on > my body, in no related time or order. I call them " zingers " . All blood work > has come back normal. The doctors are stumped. They are starting to treat me > for PLS. They put me on 2000 Vitamin C, 1200 Vitamin E,, beta carotene and 200 > mg of celebrex twice a day. I will have a CT on Friday of chest, pelvis and > abdomen. Can't anyone give me some insight or encouragement? > > God Bless you all > > Pat mrsbill@a... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Pat, I also have MR Spect with abnormality. I'd be interested in what yours had to say. My showed a decrease in NAA on one side only, consistent with PLS or ALS. I also get the fasciculation's and spasms like you describe, but they are decreased dramatically by my baclofen dose increases. I have a baclofen pump. It really helps. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi to all of you... Thank you so very much for your input and advice. It is so nice to know that you're not alone. ...my MR Spectroscopy said on the left side NAA 56, Cr 23. The NAA/Cr ratio 2.41 on the right side NAA 61. Cr 22 The NAA/Cr ratio 2.75 Axcial FLAIR and T2 weighted images of the whold brain were one. The FLAIR images demonstrate possible subtle abnormal increased signal intensity of portions of the left motor cortex. The right motor cortex is more normal signal intensity. Do you know what all this means? The doctors tell me they are stumped because I have lots of fasciculations all over ( but especially in my legs) but a normal EMG. They can't tell me if it is ALS or PLS or either. They are doing a CT scan of chest,abdomen, pelvis tommorrow. They tell me this is to rule out paraneoplastic syndrome. I have an appointment next Thursday to go over everything. No I haven't fallen, although sometimes I feel like I walk to the side. In the AM my legs feel heavy (especially my thighs) but it goes away. Are any of you taking celebrex? Doctor started me on in today, 200mg, bid. What will happen to me next? What are they now looking for? Thank you all for your answers, encouagement, and insight. I will now sign myself " Cookie " as that is my nickname, and what my friends call me. (besides I think there may be another Pat in the group. Looking to hear from you. Cookie > Hi Pat, > I also have MR Spect with abnormality. I'd be interested in what yours had > to say. My showed a decrease in NAA on one side only, consistent with PLS > or ALS. > I also get the fasciculation's and spasms like you describe, but they are > decreased dramatically by my baclofen dose increases. I have a baclofen > pump. It really helps. > > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 I started Celebrex 200 mg BID a little over a month ago. Sherry Re: new " kid " on the block Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Cookie (their is a name I haven't heard in many many years). I am one of the " oldies " of this unique group, have had PLS for more years than I care to remember, diagnosed in 1986 but have had all the symptoms many years prior to my diagnosis, but really did not surface till the mid 80's. I have never ever had any pain until recently (my knee) and my doctor put my right on Celebrex. It did take away the knee pain, but there has been no other significant improvement in any other part of my body since I started to take them 3 months ago. I am 66 years old and I am sure there are more aches and pains coming as I age. The only time I ever have experienced and real change in my condition is when I have had a very traumatic experience that has caused me extreme stress. I had such an incident this past March, and since then I have fallen four times (because of leg weakness) and now use a power chair 3/4 of the time. So keep smiling and be happy! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2003 Report Share Posted January 10, 2003 Hi Cookie, MR Spectroscopy can help detect neuron loss in the motor cortex. This is useful in detecting upper motor neuron lesions in ALS and PLS. Prior to this test, there wasn't any kind of test that could confirm motor neuron loss. Motor neuron diseases: comparison of single-voxel proton MR spectroscopy of the motor cortex with MR imaging of the brain. Radiology. 1999 Sep;212(3):763-9. PMID: 10478245 [PubMed - indexed for MEDLINE] The NAA stands for N-acetylaspartate. Cr stands for Creatine. NAA is found only within neurons. The measure the ratio of NAA to Cr. The study I reference had a cutoff ratio of 2.5. In the study, ALS patients consisted of 11 with a mean ratio of 2.42 on the right side and 2.37 on the left. PLS patients consisted of 18 with a mean ratio of 2.46 on the right side and 2.68 on the left. Control group consisted of 14 with a meant ratio of 3.12 on the right side and 3.04 on the left. According to this study, you are pretty typical of a PLS patient.. Mine showed decreased NAA/CR on the left side and normal on the right. I only have the report, not the numbers. My right side was the first to be affected and is consistent with the MRS because the brain crosses over, the left controls the right side, etc. My neuro told me that he MRS findings eliminate other diseases and leaves ALS and PLS as the only diagnosis possible. While we can't be sure I won't become ALS in the future, we are fairly certain I will remain PLS due to the length of time I've had PLS. Not many patients have had MRS done. NIH is doing a study of ALS, PLS, and HSP patients using the MRS. It will be interesting to see what they find. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Hi , Why isn't the MR Spect used more often? For example I had completely useless surgery and have been led to believe that there was no way to know if the surgery would help other than to do it. It seems that the MR Spect would say otherwise. Whatever it costs, it would be cheaper than a $40K plus surgery. Not to mention the risks, etc. Also I would like to know how much oral Baclofen you were taking before you got the pump. I have to push to get my doctors to discuss medications. Thanks! Jane in Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Hi Jane, The MR Spect is relatively new and not many places have the equipment to perform this test. My insurance refused to pay for the test because they said it was experimental. My husband and I decided it would be cheaper to pay it ourselves then go through all the other testing 5 or 6 more times! You can contact NIH about participating in the ALS/PLS/HSP MR Spect study: http://www.als-pls.org/research.htm I took 30-40 mg per day prior to my implant, but I have a liver condition that kept me from taking more. My neuro said my ideal dose would have been around 100mg at that time. I'm at 747 ul/ml per day with the pump. No liver complications with the pump, and no drowsiness! My neuro believes there is a magic window of time that a pump implant is most beneficial to a PLSers. And that is before you are too disabled and have lost your muscle strength and after you are unable to treat the spasticity effectively with oral baclofen. If you are going to get a pump, better now than later. Your neuro's job,since he can't cure you, is to make your life as good as possible for as long as possible. Otherwise, you don't need him/her. ;-) Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Re: new " kid " on the block > Hi , > > Why isn't the MR Spect used more often? For example I had completely useless > surgery and have been led to believe that there was no way to know if the > surgery would help other than to do it. It seems that the MR Spect would say > otherwise. Whatever it costs, it would be cheaper than a $40K plus surgery. > Not to mention the risks, etc. > > Also I would like to know how much oral Baclofen you were taking before you > got the pump. I have to push to get my doctors to discuss medications. > > Thanks! > > Jane in Florida > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 I brought up the MR spectroscopy to the neurologist on Monday. He really wouldn't even consider it. I don't know if it is because he didn't decide on it,, or what. All he would say is that the test was not specific enough to diagnose .. Thats all we could get out of him. Sherry Quote Link to comment Share on other sites More sharing options...
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