Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Edith, Well, that's the pits! At my last EMG I showed minor LMN signs and so " technically " I'm categorized as ALS but I know it ain't so...that's what I'll continue to think. So what, like you, I'm not going to change my outlook on life. My theory is that as long as I am able to do what I do, and (hopefully) help others, then it's my obligation to do that for as long as I can. Hang in there and we'll see you in Chicago! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Edith: You seem to have the positive attitude it takes to deal with PLS or ALS with a vengance. Sorry they confirmed the ALS diagnosis but hopefully it will be slow in progression. As you already know from the ALS group they are so determined to give the best fight they and they show such courage. Will keep you in my prayers. Jo. diagnosis confirmed > For two years, I have believed I have PLS. Then in March my > neurologist said I have ALS, after doing an EMG, nerve conduction > study and muscle biopsy. I went to a specialist last week at the > University of Florida/ville and he repeated the EMG. > Unfortunately, he came to the same conclusion. > > The good news is that since I have no bulbar symptoms, he expects a > slow progression, but there's no guarantee. I plan to continue > enjoying life as well as I can and take a wait-and-see attitude. > > Keep me in your prayers. > Best to all, > Edith > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Edith, I have a prayer journal and you have just been added! One day at a time is all we can do! Hugs, Sue Me I plan to continue > enjoying life as well as I can and take a wait-and-see attitude. > > Keep me in your prayers. > Best to all, > Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 In a message dated 5/19/2004 10:47:21 PM Eastern Daylight Time, PLS-FRIENDS writes: > The good news is that since I have no bulbar symptoms, he expects a > slow progression, but there's no guarantee. I plan to continue > enjoying life as well as I can and take a wait-and-see attitude. > Hi Edith, I'm sorry to hear of the confirmation of ALS. It's good to hear that the doctors think it will be a slow type and I will keep you in my prayers. Some cases are quite slow and there is so much research going on now, that there is real hope for a cure for it and hopefully related conditions. PLS is generally a " holding ground " for several years, as the true disease often turns out to be ALS or HSP. That's the reason that a lot of people are intially diagnosed with PLS. PLS is the rarest of the rare. The stats for ALS are 30,000 people, for HSP is 20,000 people and for PLS - who knows? Some old stats suggest 500 people, but the researchers working on them feel it's more like 1,000. Thanks for your help on information on Sun City in FL. best, Kathi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Hi Edith I am assuming that they jumped straight to confirmed bypassing the 'possible' and 'probable' levels. Now remember my 16 neurologists. Was there LMN involvement other than in the shoulder area? shoulder area is seen in many PLSers. Did the doc suggest any of the new therapies we discussed? Most of all what does your brain tell you about your own body? Have YOU been noticing changes? You have my shoulder to cry on, and my face to yell at and you are in my prayers Eva in WV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Edith, sorry that your PLS has turned into ALS. I guess that is a fear we all share. I pray that the progression is slow and that you can enjoy an active life for many years to come. Susieq in No Cal > For two years, I have believed I have PLS. Then in March my > neurologist said I have ALS, after doing an EMG, nerve conduction > study and muscle biopsy. I went to a specialist last week at the > University of Florida/ville and he repeated the EMG. > Unfortunately, he came to the same conclusion. > > The good news is that since I have no bulbar symptoms, he expects a > slow progression, but there's no guarantee. I plan to continue > enjoying life as well as I can and take a wait-and-see attitude. > > Keep me in your prayers. > Best to all, > Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Hi Edith, Sorry to hear the dx. But the researchers are working overtime to find a cure and they have some hot leads to go on. They have been doing research on rats and implanting the stem cells in their brains and they are growing new neurons in their brains not just in a lab dish anymore. I also heard on the news that a neuro surgeon here in N.J. is doing a nerve transplant on a 19 year old girl who was injured in a car accident, and lost use of left arm, she had broken her neck. The surgeon is transplanting a nerve from her father's ankle into her arm. So no matter what dx. they give you, there is hope and a cure right around the corner. Hugs and prayers...Jeannie/NJ. diagnosis confirmed For two years, I have believed I have PLS. Then in March my neurologist said I have ALS, after doing an EMG, nerve conduction study and muscle biopsy. I went to a specialist last week at the University of Florida/ville and he repeated the EMG. Unfortunately, he came to the same conclusion. The good news is that since I have no bulbar symptoms, he expects a slow progression, but there's no guarantee. I plan to continue enjoying life as well as I can and take a wait-and-see attitude. Keep me in your prayers. Best to all, Edith ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Edith, I am so sorry to hear that it has changed to ALS. My thoughts and prayers are with you and your family. They are working very hard for a cure for all of us, hopefully it will be in our life time. Sandy diagnosis confirmed For two years, I have believed I have PLS. Then in March my neurologist said I have ALS, after doing an EMG, nerve conduction study and muscle biopsy. I went to a specialist last week at the University of Florida/ville and he repeated the EMG. Unfortunately, he came to the same conclusion. The good news is that since I have no bulbar symptoms, he expects a slow progression, but there's no guarantee. I plan to continue enjoying life as well as I can and take a wait-and-see attitude. Keep me in your prayers. Best to all, Edith ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 DEAR EDITH, WE ARE SO SORRY TO HEAR OF YOUR CHANGE IN DX. THIS HAPPENED TO MY DON AFTER 2 YEARS. YES HE HAS ALS. BUT HE HAS CHOSEN TO LIVE WITH ALS AND NOT DIE WITH ALS. NOT SOON ANYHOW. WE TAKE EACH DAY AS IT COMES AND ADAPT FOR EACH CHANGE. WE STILL GO BUT NOT AS OFTEN. WINTER IS THE WORST AND I'M SURE WE WILL HAVE TO WATCH THE HOT WEATHER THIS SUMMER. OUR DAUGHTER WAS HAVING TROUBLES MAKING IT ON HER OWN SO SHE HAS MOVED IN WITH US AND WE ARE ENJOYING THE CHILDREN. (2 & 8) THAT IS BETWEEN THE SCREAMING AND FIGHTS. OUR DAUGHTER IS A HELP TO US. I'M HAVING SOME PROBLEMS LATELY AND NEED THE EXTRA HELP AROUND THE HOUSE. WE HAVE HOME HEALTH CARE AND PASSPORT A FEDERAL PROGRAM THAT PAYS FOR THE HOME HEALTH. WE HAVE A WONDERFUL GIRL THAT COMES TWICE A DAY 7 DAYS A WEEK TO GET DON CLEANED AND UP THEN TO CLEAN HIM AFTER THE DAY AND PUT HIM TO BED. IT TAKES TWO OF US NOW TO HANDLE HIM. ENJOY YOUR TIME NOW BUT THE BEST THING I CAN SUGGEST IS PLAN FOR THE FUTURE. YOU NEVER KNOW WHEN THE NEXT LOSS IS GOING TO HAPPEN. IF YOU ARE NOT IN A WHEEL CHAIR NOW PLAN FOR A GOOD ONE THAT WILL ADAPT TO YOUR NEEDS AS TIME GOES BY. WE GOT DON ONE THAT TIPS. I NOW WISH WE HAD GOTTEN A RECLINING ONE. WE BELONG TO THE LIVING WITH ALS GROUP ON YAHOO. I KNOW THERE ARE SEVERAL ON THIS SITE THAT ALSO BELONG THERE. WE WILL HELP WHEN EVER WE CAN. GOOD LUCK WITH YOUR FUTURE. LOVE BONNIE diagnosis confirmed > For two years, I have believed I have PLS. Then in March my > neurologist said I have ALS, after doing an EMG, nerve conduction > study and muscle biopsy. I went to a specialist last week at the > University of Florida/ville and he repeated the EMG. > Unfortunately, he came to the same conclusion. > > The good news is that since I have no bulbar symptoms, he expects a > slow progression, but there's no guarantee. I plan to continue > enjoying life as well as I can and take a wait-and-see attitude. > > Keep me in your prayers. > Best to all, > Edith > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Hi Edith, Are you on LDN? Regarding your diagnosis, God is greater than ALS and every other disease out there. While you wait and see, pray and expect also. Nothing is impossible, nothing with God. I saw a testimony of a woman who was diagnosed with ALS and God healed her totally. So since God is not a respecter of persons, so can you have the same miracle. I'm still spraying for you. Stay positive and focus on the Lord. Take care and... God Bless Yolanda diagnosis confirmed For two years, I have believed I have PLS. Then in March my neurologist said I have ALS, after doing an EMG, nerve conduction study and muscle biopsy. I went to a specialist last week at the University of Florida/ville and he repeated the EMG. Unfortunately, he came to the same conclusion. The good news is that since I have no bulbar symptoms, he expects a slow progression, but there's no guarantee. I plan to continue enjoying life as well as I can and take a wait-and-see attitude. Keep me in your prayers. Best to all, Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Edith, you have a very good outlook and I'm sure that helps. I am sorry the results came out the same. Some people last a long time with ALS. Shackle and Hawkins are two that comes to mind and I'm sure there are others. Meantime you have all the PLS'ers in your corner who are just an email away. You will be in my prayers. Donna > For two years, I have believed I have PLS. Then in March my > neurologist said I have ALS, after doing an EMG, nerve conduction > study and muscle biopsy. I went to a specialist last week at the > University of Florida/ville and he repeated the EMG. > Unfortunately, he came to the same conclusion. > > The good news is that since I have no bulbar symptoms, he expects a > slow progression, but there's no guarantee. I plan to continue > enjoying life as well as I can and take a wait-and-see attitude. > > Keep me in your prayers. > Best to all, > Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Hi Edith: I'm sorry to hear your diagnosis. All we can do is try to take it one day at a time and who knows what tomorrow will bring for us. Your in my prayers, take good care. Jen L. Ottawa, Canada Edith wrote: For two years, I have believed I have PLS. Then in March my neurologist said I have ALS, after doing an EMG, nerve conduction study and muscle biopsy. I went to a specialist last week at the University of Florida/ville and he repeated the EMG. Unfortunately, he came to the same conclusion. The good news is that since I have no bulbar symptoms, he expects a slow progression, but there's no guarantee. I plan to continue enjoying life as well as I can and take a wait-and-see attitude. Keep me in your prayers. Best to all, Edith --------------------------------- Quote Link to comment Share on other sites More sharing options...
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