Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 It gets much worse when I'm stressed, excited, nervous or tired - I have difficulty getting around because I stiffen when those things happen. Hi Ruth I don't have PLS, I have something called Spastic Paraparesis (the hereditary kind, so it's HSP) but I'm on this List because HSP and PLS are related disorders and almost identical in the leg problems - slowly progressive spasticity and weakness. When I feel those emotions above, they have a direct impact on my legs. Fortunately, my symptoms aren't too bad right now, as they only started a few years ago, but emotions sure have an immediate affect on them. My progression so far is very slow, so that's good. I work full-time and only use a cane for extended outings. People can have trouble getting correct diagnosis when they have rare disorders, so welcome to a place I'm sure you will find understanding with. Welcome, Kathi HSPer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 Hi Ruth, I am female, almost 54, and was diagnosed 2 years ago with PLS. I have progressed very little, and am still very fortunate to be mildly affected. I use a cane to walk once in awhile, and like you, walk slower with more spasticity if I am nervous, excited, or feel self-conscious. My biggest problem is fatigue if I overdo it, which I do frequently. I do not take anything for the PLS. I do take a diuretic for my blood pressure, and Ditropan XL for a spastic bladder. Welcome to our group, and may you get lots of help, suggestions, support, and best of all friendship. Laurel Newly diagnosed > After having symptoms and difficulty with my right leg for 8 years, I > was just diagnosed with PLS. It gets much worse when I'm stressed, > excited, nervous or tired - I have difficulty getting around because I > stiffen when those things happen. I'm still not sure if that is the > right diagnosis - I've had one for 8 years that I always knew was > wrong. Anyway, I haven't gotten really worse in 8 years - just ups and > downs. Is that normal? I've read where some patients are totally > incapacitated and that it's progressive but it seems as though I've > not progressed over the past 8 years (thank goodness). When do you > know it's time to give up working and go on disability? I struggle a > lot with this - it is hard to keep up a demanding job, but is it bad > enough to retire? Also, if I lost my job (our company is being > reorganized) I'd lose by disability insurance and probably find it > very difficult to get another job. No one is very anxious to hire a > 50-year-old woman who walks with a walker and has difficulty walking, > even with the walker at times. I guess I'd just like to hear some > experiences as to progression, what meds help/hurt and how > stress/emotions affect others. It's kind of scary having something > that so little is known about. Thanks for whatever insight anyone can > give me on this. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 Are you still able to work? Has your doctor given you any idea of long-term prognosis? An article I read says the average lifespan with this is 20 years but I've had this for 8 years and really haven't gotten any worse. I guess there are varying degrees, like anything else. I walk with a walker cause when I get tense or nervous, my leg stiffens and I can't move. With the walker, I relax and am able to move pretty well if I'm feeling good. Do you get extra tired with this? I sure seem to have no energy a lot of the time. Thanks for responding - it's nice to hear from someone who has the same problem. Laurel Aasland wrote: > Hi Ruth, > I am female, almost 54, and was diagnosed 2 years ago > with PLS. I have progressed very little, and am still very fortunate to be > mildly affected. I use a cane to walk once in awhile, and like you, walk > slower with more spasticity if I am nervous, excited, or feel > self-conscious. My biggest problem > is fatigue if I overdo it, which I do frequently. I do not take anything > for the PLS. > I do take a diuretic for my blood pressure, and Ditropan XL for a spastic > bladder. > Welcome to our group, and may you get lots of help, suggestions, support, > and best of all friendship. > Laurel > > Newly diagnosed > > > After having symptoms and difficulty with my right leg for 8 years, I > > was just diagnosed with PLS. It gets much worse when I'm stressed, > > excited, nervous or tired - I have difficulty getting around because I > > stiffen when those things happen. I'm still not sure if that is the > > right diagnosis - I've had one for 8 years that I always knew was > > wrong. Anyway, I haven't gotten really worse in 8 years - just ups and > > downs. Is that normal? I've read where some patients are totally > > incapacitated and that it's progressive but it seems as though I've > > not progressed over the past 8 years (thank goodness). When do you > > know it's time to give up working and go on disability? I struggle a > > lot with this - it is hard to keep up a demanding job, but is it bad > > enough to retire? Also, if I lost my job (our company is being > > reorganized) I'd lose by disability insurance and probably find it > > very difficult to get another job. No one is very anxious to hire a > > 50-year-old woman who walks with a walker and has difficulty walking, > > even with the walker at times. I guess I'd just like to hear some > > experiences as to progression, what meds help/hurt and how > > stress/emotions affect others. It's kind of scary having something > > that so little is known about. Thanks for whatever insight anyone can > > give me on this. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 Ruth, Welcome to our group. You'll find many wonderful people here. Like you, my symptoms also get (temporarily) worse when I get stressesd, excited, nervous or tired. Cold also makes things worse. You indicated that you really haven't gotten worse in 8 years. PLS is usually progressive, although there may be times of little or no progression. Nonetheless, 8 years seems like a long time to go without worsening of symptoms. Further, PLS affects both sides of the body, although it may start on one side and then move into the other. That your symptoms are only in your right leg, after 8 years, seems strange. You noted that PLSers lived an average 20 years after onset. That is based on a study where the average PLSer's symptoms began at age 55, and they lived until other conditions caused their death. PLS, by itself, is not fatal. (But falls and choking on food can kill you.) Please ask more questions. We all like to add our opinions. Mark > After having symptoms and difficulty with my right leg for 8 years, I > was just diagnosed with PLS. It gets much worse when I'm stressed, > excited, nervous or tired - I have difficulty getting around because I > stiffen when those things happen. I'm still not sure if that is the > right diagnosis - I've had one for 8 years that I always knew was > wrong. Anyway, I haven't gotten really worse in 8 years - just ups and > downs. Is that normal? I've read where some patients are totally > incapacitated and that it's progressive but it seems as though I've > not progressed over the past 8 years (thank goodness). When do you > know it's time to give up working and go on disability? I struggle a > lot with this - it is hard to keep up a demanding job, but is it bad > enough to retire? Also, if I lost my job (our company is being > reorganized) I'd lose by disability insurance and probably find it > very difficult to get another job. No one is very anxious to hire a > 50-year-old woman who walks with a walker and has difficulty walking, > even with the walker at times. I guess I'd just like to hear some > experiences as to progression, what meds help/hurt and how > stress/emotions affect others. It's kind of scary having something > that so little is known about. Thanks for whatever insight anyone can > give me on this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 I had seen articles on stiff mans syndrome which sounded very much like me - probably more so than PLS. It's an autoimmune disease, neuromuscular and is progressive. However, it has varying degrees and so many of the people I heard fro in their group gave similar stories to mine. I started with a slight stiffening of my right leg 8 years ago. It got worse until it was swollen and I was having unbearably painful muscle spasms. If I were stressed, it got worse. Went through several docs, was diagnosed with reflex sympathetic dystrophy by a rheumatologist (which I didn't think I had) and put on huge doses of Prednisone. The muscle spasms and swelling went away but I had something similar to panic attacks when I tried to walk by myself. Long story short, I can walk pretty well with a walker when I'm not stressed or tired (it's worse if I am) and walk without a cane or walker around my house. I just don't know - I'm thinking of going to the Mayo Clinic (I live in Omaha, NE) to see what they can find out. They did a research study on Stiff Man's Syndrome - it's as rare as PLS. I may have to do that cause I'm not sure about this PLS - I haven't gotten any worse in 8 years and have gotten better in some ways. It waxes and wanes, as they say - up and down. It's hard for me to believe I have something progressive like PLS after 8 years. markw732@... wrote: > Ruth, > > Welcome to our group. You'll find many wonderful people here. > > Like you, my symptoms also get (temporarily) worse when I get > stressesd, excited, nervous or tired. Cold also makes things worse. > > You indicated that you really haven't gotten worse in 8 years. PLS is > usually progressive, although there may be times of little or no > progression. Nonetheless, 8 years seems like a long time to go > without worsening of symptoms. > > Further, PLS affects both sides of the body, although it may start on > one side and then move into the other. That your symptoms are only in > your right leg, after 8 years, seems strange. > > You noted that PLSers lived an average 20 years after onset. That is > based on a study where the average PLSer's symptoms began at age 55, > and they lived until other conditions caused their death. PLS, by > itself, is not fatal. (But falls and choking on food can kill you.) > > Please ask more questions. We all like to add our opinions. > > Mark > > > > After having symptoms and difficulty with my right leg for 8 years, I > > was just diagnosed with PLS. It gets much worse when I'm stressed, > > excited, nervous or tired - I have difficulty getting around because I > > stiffen when those things happen. I'm still not sure if that is the > > right diagnosis - I've had one for 8 years that I always knew was > > wrong. Anyway, I haven't gotten really worse in 8 years - just ups and > > downs. Is that normal? I've read where some patients are totally > > incapacitated and that it's progressive but it seems as though I've > > not progressed over the past 8 years (thank goodness). When do you > > know it's time to give up working and go on disability? I struggle a > > lot with this - it is hard to keep up a demanding job, but is it bad > > enough to retire? Also, if I lost my job (our company is being > > reorganized) I'd lose by disability insurance and probably find it > > very difficult to get another job. No one is very anxious to hire a > > 50-year-old woman who walks with a walker and has difficulty walking, > > even with the walker at times. I guess I'd just like to hear some > > experiences as to progression, what meds help/hurt and how > > stress/emotions affect others. It's kind of scary having something > > that so little is known about. Thanks for whatever insight anyone can > > give me on this. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Hi Ruth!!! I know you've already met a lot of nice people in this group. They are wonderful & so helpful with any question that you need to ask! I'm 51 years old. My name is Beth. I had a terrible time trying to get a diagnosis. I first noticed some symptoms about 1991. Well, before then but it wasn't until 1991 that I decided that something was definitely wrong & I needed to find out what it was. Many, many tests. And many, many neurologists. And they were all stumped. They would just shake their heads and say hmmmmmmmmmmmm. My neurologist here decided it would justify going to the Mayo Clinic. I had to wait 6 months for an appointment!!!! Finally my husband and I went. Spent 2 weeks there. They came up with the diagnosis of PLS. After elimination that is all that was left. I don't know my family history since I'm adopted. In the years since then, my symptoms have progressed but only in my legs. My walking has gotten worse thru the years. I now walk with a cane when I'm outside the house. Inside I just hold on to furniture and walls!!! So, from what I'm read & heard from people on here I tend to think that I have HSP. I worked until May 1999. My neurologist thought I should have gone out before then but he also knew that it had to be MY decision. YOU will know yourself when it is time to stop working. And when I did retire on retirement disability I realized how hard it was for me to go in there every day. I was just exhausted when I got home. My husband saw that but I didn't. Again, it had to be my decision!! I'm on a lot of meds. People ask me if they help!! I guess they think - she takes all those meds & still walks like that!!! I don't know how I'd be without them but I don't think I want to find out. Are you on any meds yet? Well, Ruth I don't want to overwhelm you!!! It is nice to meet you! Please feel free to ask any questions you need to. Take care. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Hi Ruth, You might be interested in reading about other PLSers on the Data page of the PLS Awareness site: http://www.geocities.com/mdmfoo/PLS.html I started with right sided symptoms, mainly my right leg. Mine came and went also, finally decided to stay! :-( I still experience really good days and really bad days. It's just that my good days aren't as good as they used to be. It also decided to involve the rest of my body, but for a long time diagnosis was difficult. It is kind of like " Name that Tune " , the PLS Edition. Give em one note(symptom), none can name it. Give them a few more, some can make some pretty good guesses. But eventually, all the notes are played and everyone gets it. It is really frustrating, but I'd start by asking my neuro why he thinks it is PLS over something else. You might get a really interesting answer. If your neuro sees other upper motor neuron signs clinically, that might be the answer. Some of these clinical signs aren't apparent to us, or they don't show in other diseases with similar symptoms, thus eliminating them. Some doctors don't like to overwhelm patients with medical stuff, thinking they aren't really interested or able to understand. And some patients don't care to know all about their disease, which is fine. But if you are interested and show your interest, I'm sure your neuro will be more inclined to discuss this with you. One of our PLSers on this list has had PLS for over 20 years and has not progressed much in 8-10 of those years (I'm trying to think back and remember, so help me Rita!). What has stopped or slowed her progression is a mystery, but one we'd all like to duplicate. Stress and attitude seem to have a lot to do with progression. But obviously, other things are involved too. My rapid progression was caused by a medication I took for another medical condition. Without that, I think mine would have been much slower. I think you mentioned fatigue? Fatigue has been one of my biggest problems. That probably keeps me from being more active and doing more. It is like my cup is only half full, and when it gets empty, there just isn't any more. Let's hope yours remains slow, and that the research we are pushing for pays off! ===== Thomson, Solana Beach, CA www.geocities.com/mdmfoo/pls.html __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Welcome to our group. Sorry about your dx. What were you previously dx with? Gene and Dollie >From: ruthc@... >Reply-To: PLS-FRIENDS >To: PLS-FRIENDS >Subject: Newly diagnosed >Date: Tue, 20 Nov 2001 20:52:28 -0000 > >After having symptoms and difficulty with my right leg for 8 years, I >was just diagnosed with PLS. It gets much worse when I'm stressed, >excited, nervous or tired - I have difficulty getting around because I >stiffen when those things happen. I'm still not sure if that is the >right diagnosis - I've had one for 8 years that I always knew was >wrong. Anyway, I haven't gotten really worse in 8 years - just ups and >downs. Is that normal? I've read where some patients are totally >incapacitated and that it's progressive but it seems as though I've >not progressed over the past 8 years (thank goodness). When do you >know it's time to give up working and go on disability? I struggle a >lot with this - it is hard to keep up a demanding job, but is it bad >enough to retire? Also, if I lost my job (our company is being >reorganized) I'd lose by disability insurance and probably find it >very difficult to get another job. No one is very anxious to hire a >50-year-old woman who walks with a walker and has difficulty walking, >even with the walker at times. I guess I'd just like to hear some >experiences as to progression, what meds help/hurt and how >stress/emotions affect others. It's kind of scary having something >that so little is known about. Thanks for whatever insight anyone can >give me on this. > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Several years ago (when it started) I saw 7 different docs. A rheumatologist said I had reflex sympathetic dystrophy - which I didn't agree with - but by that time I was so depressed and feeling so bad he went ahead and treated me. It got better and then I had my gp take over. Just went with the flow and every so often would ask for new treatments, took biofeedback, hyponotherapy, etc. Then I saw the articles on SMS and really feel it's exactly what I'm going through. My doc thought it was worth checking and sent me to a neurologist - who said it was PLS after listening to my story and an exam. I just don't buy it after reading more about it - I'm sure I have a neuromuscular disorder, but I'd lean more toward SMS. Not sure what direction I'm going now - the neuro put me on zanaflax so I think I'll see what that does. I may just live with what he's saying for now (and not really believe it) and at some point seek another opinion. Gene & Dollie Darrah wrote: > Welcome to our group. Sorry about your dx. What were you previously dx > with? Gene and Dollie > > >From: ruthc@... > >Reply-To: PLS-FRIENDS > >To: PLS-FRIENDS > >Subject: Newly diagnosed > >Date: Tue, 20 Nov 2001 20:52:28 -0000 > > > >After having symptoms and difficulty with my right leg for 8 years, I > >was just diagnosed with PLS. It gets much worse when I'm stressed, > >excited, nervous or tired - I have difficulty getting around because I > >stiffen when those things happen. I'm still not sure if that is the > >right diagnosis - I've had one for 8 years that I always knew was > >wrong. Anyway, I haven't gotten really worse in 8 years - just ups and > >downs. Is that normal? I've read where some patients are totally > >incapacitated and that it's progressive but it seems as though I've > >not progressed over the past 8 years (thank goodness). When do you > >know it's time to give up working and go on disability? I struggle a > >lot with this - it is hard to keep up a demanding job, but is it bad > >enough to retire? Also, if I lost my job (our company is being > >reorganized) I'd lose by disability insurance and probably find it > >very difficult to get another job. No one is very anxious to hire a > >50-year-old woman who walks with a walker and has difficulty walking, > >even with the walker at times. I guess I'd just like to hear some > >experiences as to progression, what meds help/hurt and how > >stress/emotions affect others. It's kind of scary having something > >that so little is known about. Thanks for whatever insight anyone can > >give me on this. > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 I'm unusual in that in 8 years it's stayed in my right left and I've not gotten worse. I think it may be stiff mans syndrome but the neuro said no. Anyway, sometimes I think we'll never know for sure - just take it one day at a time and go from there. I'm thinking of disability cause my job is so stressful now and it impacts my health so much when I'm stressed. I don't foresee it getting any better (the job) and I don't want to make my illness worse. I got this when I was in an EXTREMELY stressful job and I don't want to go there again! I have walked with a 4 wheeled walker for 6 years - it keeps me going. The thing about my job is that I have a good income, health insurance and disability insurance. If I get laid off, I lose that. If I can retire on my disability, I'm secure. And right now I'm not feeling really secure about my job. Was it difficult to get the disability with the PLS diagnosis? What other symptoms/problems did you have that they took into account when deciding the outcome of your disability case? Thanks for replying and any info you can give me. HopeyS89@... wrote: > Hi Ruth!!! > I know you've already met a lot of nice people in this group. They are > wonderful & so helpful with any question that you need to ask! > > I'm 51 years old. My name is Beth. I had a terrible time trying to get a > diagnosis. I first noticed some symptoms about 1991. Well, before then but > it wasn't until 1991 that I decided that something was definitely wrong & I > needed to find out what it was. Many, many tests. And many, many > neurologists. And they were all stumped. They would just shake their heads > and say hmmmmmmmmmmmm. My > neurologist here decided it would justify going to the Mayo Clinic. I had to > wait 6 > months for an appointment!!!! Finally my husband and I went. Spent 2 weeks > there. > They came up with the diagnosis of PLS. After elimination that is all that > was left. I don't know my family history since I'm adopted. > > In the years since then, my symptoms have progressed but only in my legs. My > walking has gotten worse thru the years. I now walk with a cane when I'm > outside the house. Inside I just hold on to furniture and walls!!! So, > from what I'm read & heard from people on here I tend to think that I have > HSP. > > I worked until May 1999. My neurologist thought I should have gone out > before then but he also knew that it had to be MY decision. YOU will know > yourself when it is time to stop working. And when I did retire on > retirement disability I realized how hard it was for me to go in there every > day. I was just exhausted when I got home. > My husband saw that but I didn't. Again, it had to be my decision!! > > I'm on a lot of meds. People ask me if they help!! I guess they think - she > takes all those meds & still walks like that!!! I don't know how I'd be > without them but I don't think I want to find out. Are you on any meds yet? > > Well, Ruth I don't want to overwhelm you!!! It is nice to meet you! Please > feel free to ask any questions you need to. Take care. Beth > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 Ruth: Many years prior to my dx, they also said I had this and then that! They didn't have a clue, and over 20 years ago, not many doctors (and still) never heard of PLS. It actually took almost 3 years to really find out what I had. I wald into my family doctor and TOLD him, there was something really wrong with me, and he wasn't going o pooh pooh it any more. I finally found Dr. Gross at the Lahey Clinic, outside of Boston, who got it right the first time. You have got to keep searching for that one doctor " WHO KNOWS " , rather then assumes you have this and that. You will know when the dx is correct, and then find a competent neurologist who is familiar with this disease (like mine), and have enough faith in him, that he will do the right thing for you when the need arises. Go on with your life the best you can, and stop worrying, you know what stress does? Good Luck Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 Hello Ruth! Welcome to the group! I apologize up front to our readers for this lengthy e-mail, but I felt compelled to share as many thoughts as I could today....it's been a while. Like many readers, you hopefully feel better already because you've now found others like yourself who have undergone many of your experiences, symptoms and feelings. It truly helped me to see that I was not the only person in the world with PLS. I surely felt that way until I finally hit R.'s website after months of searching the web for information. I was diagnosed in Jan.1998 after 3 years of "noticeable" symptoms and a multitude of tests to exclude other diseases. Without belaboring all the details, I too was in a stressful job that only made my PLS symptoms worse. For example, once I began to have increased speech and voice problems, speaking in a room with background noise became next to impossible. My voice was first hoarse, like a cold. Later, I found my voice became strained if I tried to project it across the room. Like others here have mentioned, I then noticed that my voice would wane midway through a sentence or in the middle of a word as if I just ran out of air. I was already experiencing problems with balance and walking with an altered gait. This made people suspicious that maybe I had begun to drink excessively. Couple that with slurred speech (especially on the phone) and those who worked for and with me were beginning to wonder. Months earlier, I had informed my supervisor and his boss in a private meeting about my worsening symptoms. They wisely told me that there was no problem. They told me to just let them know what I needed to do my job. A wise move on their part because an ADA attorney would've had a field day on them had they said my disability was a "problem". Unfortunately, I had to make a decision within the next two months because my speech took a quick downturn; I was getting more easily fatigued more often......it just wasn't working and I knew it. I had to get "selfish". My health was more important than finishing the next project or resolving the company's recurring personnel problems. Please understand that my "Protestant work ethic" made it very difficult to tell myself and others that I could no longer work. I love to work and I loved my work, my company and my people. For a male, I think this doubly worse because we usually have bigger egos and the primary reason we exist is to take care of and provide for our families. My wife calls it the "Lion in the Jungle" syndrome. PLS makes us feel like a wounded lion in the jungle, less capable of protecting our loved ones and more susceptible to attack by those we had previously conquered, ruled or intimidated. Sorry for the side story, but I hope you appreciate the analogy. It helps to explain why so many males vs females refuse to use a cane in the early stages of PLS when they can prevent the early falls and I admittedly had my fair share of falls. It's mostly vanity that prevents them from using the cane, until one has a serious fall! Then out of necessity, they begin to use the cane. I have progressed to using a four-wheel walker when I go outside the home. It's much safer. In the house, I sometimes use a cane, but I mostly "stumble" around using furniture and yes, even walls as the means to prevent falls. Furniture walking is not a guarantee against falling! I've fallen right in the middle of our kitchen floor because a foot got "stuck" and wouldn't move when the rest of my body moved. Many readers will tell you that when this occurs, there's little one can do to prevent the inevitable fall. Over time, I have begun to have problems with swallowing and chewing. I can "choke" or "gag" on liquids, even my own saliva if it hits the throat in just the wrong way! Certain foods, e.g. cashews and crackers tend to be difficult to swallow. They also make it difficult to talk while in the mouth. Excessive saliva in the mouth is something else I experience as of late. I noticed this with other PLS'ers I met over a year ago; I didn't have the symptom at the time but it surfaced about 6 months ago. There are medications to prevent it. I suggest if it becomes applicable that you discuss the pros and cons with your neurologist. Re: employment and disability. If I understand your comments correctly, your company has a disability benefits program and you are covered by the plan. My personal recommendation is not to wait until they lay you off. I'm not an employee relations attorney, or an attorney of any kind. However, to safeguard your personal needs, I recommend that you at least have an initial conversation with an employment relations attorney. It may be that you can handle all of this on your own. Talking to the attorney may serve to merely give you the reassurance that you're on the right track. Keep in mind, LTD benefits are not a given. In most circumstances, you have to be "approved". You must be able to articulate and substantiate the reasons why and what aspects of your job you can not perform. Once approved by your company's disability insurance carrier, you then will receive some percentage (often somewhere around 60%) of your salary (and bonuses, as applicable). If approved, and even as you apply for LTD, I would recommend that you also contact your local Social Security Office so you can begin the process to receive Social Security Disability Insurance benefits. In most cases, your company's LTD benefits will be decreased by the amount provided by your SSDI benefits. This is not unusual. There's a lot of paperwork involved in the disability approval process, but it's worth the time. Make copies of any paperwork you're asked to submit to Social Security or your company's insurance carrier. Otherwise, you'll find yourself reinventing the medical history, symptoms,etc. That can be a real pain. Both agencies ask similar questions. Ruth, in closing I will say you have to weigh the pros and cons of "hanging on" in your present position vs leaving under the company's disability program. You may have to make some significant lifestyle changes but I humbly submit that your health is job #1! My family has said that since I stopped working, I "look better" because the stress is gone. You'll find plenty of things to keep you busy and as active as your body allows. There are people in this group who still travel, go for walks in the woods, go to the beach, etc. Life does not stop because of your condition unless you stop living! You have much life to live...stay positive in your thoughts regardless of this physical setback. Many believe the positive outlook also helps to minimize your stress. Sorry to be so long winded but I'm very thankful to have found this group when I did and want you to believe you are not alone. Come back often. There are many "silent" PLS'ers here, who may not comment often, some out of choice, others may be physically unable. However, we all benefit immensely from each others' experiences. Happy Thanksgiving! Regards, (DE) Re: Newly diagnosed I'm unusual in that in 8 years it's stayed in my right left and I've not gottenworse. I think it may be stiff mans syndrome but the neuro said no. Anyway,sometimes I think we'll never know for sure - just take it one day at a time andgo from there. I'm thinking of disability cause my job is so stressful now and itimpacts my health so much when I'm stressed. I don't foresee it getting anybetter (the job) and I don't want to make my illness worse. I got this when I wasin an EXTREMELY stressful job and I don't want to go there again! I have walkedwith a 4 wheeled walker for 6 years - it keeps me going. The thing about my jobis that I have a good income, health insurance and disability insurance. If I getlaid off, I lose that. If I can retire on my disability, I'm secure. And rightnow I'm not feeling really secure about my job. Was it difficult to get thedisability with the PLS diagnosis? What other symptoms/problems did you have thatthey took into account when deciding the outcome of your disability case? Thanksfor replying and any info you can give me.HopeyS89@... wrote:> Hi Ruth!!!> I know you've already met a lot of nice people in this group. They are> wonderful & so helpful with any question that you need to ask!>> I'm 51 years old. My name is Beth. I had a terrible time trying to get a> diagnosis. I first noticed some symptoms about 1991. Well, before then but> it wasn't until 1991 that I decided that something was definitely wrong & I> needed to find out what it was. Many, many tests. And many, many> neurologists. And they were all stumped. They would just shake their heads> and say hmmmmmmmmmmmm. My> neurologist here decided it would justify going to the Mayo Clinic. I had to> wait 6> months for an appointment!!!! Finally my husband and I went. Spent 2 weeks> there.> They came up with the diagnosis of PLS. After elimination that is all that> was left. I don't know my family history since I'm adopted.>> In the years since then, my symptoms have progressed but only in my legs. My> walking has gotten worse thru the years. I now walk with a cane when I'm> outside the house. Inside I just hold on to furniture and walls!!! So,> from what I'm read & heard from people on here I tend to think that I have> HSP.>> I worked until May 1999. My neurologist thought I should have gone out> before then but he also knew that it had to be MY decision. YOU will know> yourself when it is time to stop working. And when I did retire on> retirement disability I realized how hard it was for me to go in there every> day. I was just exhausted when I got home.> My husband saw that but I didn't. Again, it had to be my decision!!>> I'm on a lot of meds. People ask me if they help!! I guess they think - she> takes all those meds & still walks like that!!! I don't know how I'd be> without them but I don't think I want to find out. Are you on any meds yet?>> Well, Ruth I don't want to overwhelm you!!! It is nice to meet you! Please> feel free to ask any questions you need to. Take care. Beth>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Hi , That was really well said. You hit the nail on the head, in fact several nails. Your advice is a keeper, to be shared again in the future. Thanks, Thomson ===== Thomson, Solana Beach, CA www.geocities.com/mdmfoo/pls.html __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 What is SMS? What is very PLS is your statement that it gets worse when you are stressed, tired, angry, exited, etc. How is the Zanaflex working? Were you taking Bacoflen for the other dx? Dollie > >Reply-To: PLS-FRIENDS >To: PLS-FRIENDS >Subject: Re: Newly diagnosed >Date: Wed, 21 Nov 2001 16:33:41 -0600 > >Several years ago (when it started) I saw 7 different docs. A >rheumatologist >said I had reflex sympathetic dystrophy - which I didn't agree with - but >by >that time I was so depressed and feeling so bad he went ahead and treated >me. >It got better and then I had my gp take over. Just went with the flow and >every so often would ask for new treatments, took biofeedback, >hyponotherapy, >etc. Then I saw the articles on SMS and really feel it's exactly what I'm >going through. My doc thought it was worth checking and sent me to a >neurologist - who said it was PLS after listening to my story and an exam. >I >just don't buy it after reading more about it - I'm sure I have a >neuromuscular disorder, but I'd lean more toward SMS. Not sure what >direction >I'm going now - the neuro put me on zanaflax so I think I'll see what that >does. I may just live with what he's saying for now (and not really believe >it) and at some point seek another opinion. > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 I guess I figured out that SMS is Stiff Man Syndrome. I guess I should read ALL the mail before I ask a question. Mark and your letters were great. --Dollie P.S. For those of you that asked, Gene received SSDI checks but will not receive Medicare for two years. They considered him disabled as of February 5, 2001, when we went to the University of Colorado Health Science Center and saw Dr. Ringel. Thought it was somewhat peculiar that you are not " disabled " until someone puts a label on it. Healthy on the fourth of February and disabled on the fifth. Of course, then they expect you to be disabled for five months before you receive a check. Peculiarities (sp?) of the system I guess. > >Reply-To: PLS-FRIENDS >To: PLS-FRIENDS >Subject: Re: Newly diagnosed >Date: Fri, 23 Nov 2001 17:58:31 +0000 > >What is SMS? What is very PLS is your statement that it gets worse when >you >are stressed, tired, angry, exited, etc. How is the Zanaflex working? >Were >you taking Bacoflen for the other dx? Dollie > > > > > >Reply-To: PLS-FRIENDS > >To: PLS-FRIENDS > >Subject: Re: Newly diagnosed > >Date: Wed, 21 Nov 2001 16:33:41 -0600 > > > >Several years ago (when it started) I saw 7 different docs. A > >rheumatologist > >said I had reflex sympathetic dystrophy - which I didn't agree with - but > >by > >that time I was so depressed and feeling so bad he went ahead and treated > >me. > >It got better and then I had my gp take over. Just went with the flow and > >every so often would ask for new treatments, took biofeedback, > >hyponotherapy, > >etc. Then I saw the articles on SMS and really feel it's exactly what I'm > >going through. My doc thought it was worth checking and sent me to a > >neurologist - who said it was PLS after listening to my story and an >exam. > >I > >just don't buy it after reading more about it - I'm sure I have a > >neuromuscular disorder, but I'd lean more toward SMS. Not sure what > >direction > >I'm going now - the neuro put me on zanaflax so I think I'll see what >that > >does. I may just live with what he's saying for now (and not really >believe > >it) and at some point seek another opinion. > > > > > >_________________________________________________________________ >Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 I have been taking Xanax for about 7 years. It works okay but doesn't get rid of all symptoms. SMS (Stiff Man's Syndrome) is similar to PLS. It's a neuromuscular disorder which causes you to stiffen - due to stress, fatigue, excitement, startle reflex, etc. My neuro told me that any neuromuscular disorder would be affected by that. The Zanaflex is helping a little but I've just started on it and am taking a small dose, working up gradually. I just hope it doesn't make me any more tired than I am now. Gene & Dollie Darrah wrote: > What is SMS? What is very PLS is your statement that it gets worse when you > are stressed, tired, angry, exited, etc. How is the Zanaflex working? Were > you taking Bacoflen for the other dx? Dollie > > > > >Reply-To: PLS-FRIENDS > >To: PLS-FRIENDS > >Subject: Re: Newly diagnosed > >Date: Wed, 21 Nov 2001 16:33:41 -0600 > > > >Several years ago (when it started) I saw 7 different docs. A > >rheumatologist > >said I had reflex sympathetic dystrophy - which I didn't agree with - but > >by > >that time I was so depressed and feeling so bad he went ahead and treated > >me. > >It got better and then I had my gp take over. Just went with the flow and > >every so often would ask for new treatments, took biofeedback, > >hyponotherapy, > >etc. Then I saw the articles on SMS and really feel it's exactly what I'm > >going through. My doc thought it was worth checking and sent me to a > >neurologist - who said it was PLS after listening to my story and an exam. > >I > >just don't buy it after reading more about it - I'm sure I have a > >neuromuscular disorder, but I'd lean more toward SMS. Not sure what > >direction > >I'm going now - the neuro put me on zanaflax so I think I'll see what that > >does. I may just live with what he's saying for now (and not really believe > >it) and at some point seek another opinion. > > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Welcome, Bebe, to PLS Friends, a PLS support group. My name is , I'm 56 and I live in the San Francisco Bay Area. I've had PLS probably about 8 years but I received a confirmed diagnosis in Dec. 1997 at the Mayo Clinic in Rochester, MN. I am aware of what you are going through, as most of us on this site are. You undoubtedly will hear from many of us. Our disease is a disease of exclusion--meaning they rule out a lot of other diseases before they put a name to it. My neurologist told me several years that I could possibly have ALS but then he referred to an ALS specialist and he said it wasn't ALS but it was a motor neuron disease. I think we have about 200 members on this site and most of people who do share their experiences, have very similar stories. You are not alone. Where do you live? We are scattered all over the country (and world) and many of us have been able to meet other Friends in person. I wouldn't be surprised if someone else with PLS doesn't live close to you. We're here to help and offer assistance. You are fortunate in that there are now groups like this available. The websites giving information on PLS have only been available for about 3 years. Most of us "old timers" went nuts trying to find information on PLS. A member of our group, Thomson, set up the PLS Awareness site where you can see several of our stories plus sign up too. The site is http://www.geocities.com/mdmfoo/PLS.html Our, sort of, official site is http://www.geocities.com/freyerse/index.html Reyerse set this site up when he was diagnosed with PLS. He was rediagnosed with ALS and he also has a website for that group too. He has an amazing amount of information available. We're a very active group and have very recently set up a foundation for PLS research. So, you can see, you came to the right place. Again, welcome and please let us hear more from you. Gentner Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Hi Bebe don't feel alone you are among friends here. These are all wonderful people. I myself don't have PLS but my husband does and we have had a hard time of it. But with the people in this room you will get a world of information just keep in touch with them they can tell you just about anything you need to know. I live in Michigan and would love to make conntact with someone else that has the PLS. So if you live in Mich or if anyone out there lives in Mich please let me know would love to meet some people in person. Thanks Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 Shirley, Have you checked the PLS Database on Reyerse's website? I just checked it and he does show people in Michigan. Go to http://www.geocities.com/freyerse/plspals_usa1A.html Good luck. Gentner Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Shirley, It helps a lot to meet other people. We are a rare community, but there are a handful of opportunities each year to meet others. There are several luncheon meetings scheduled. They are sponsored by the Spastic Paraplegia Foundation, a new initiative that will raise funds to speed the cure for upper motor neuron diseases as well as provide patient education: - Tampa, Florida, Feb. 9 (need RSVP by Jan. 18 so I can make final arrangements) - Indianapolis, IN, March 23 Also, there is a national Conference scheduled on Long Island, NY on April 20. It will feature an expert in upper motor neuron diseases, a physical therapist and other presentations. There will be an Arrival Dinner on Friday night, and a Farewell Dinner after the conference on Saturday night. Please let me know if you are interested in any of the above. Additionally, Dolores, a volunteer in CT, organizes patient support group meetings and is having one in May. You can contact her at: d.carron@.... best, Kathi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 thanks for the information the only problem is that I can not get away for that long of time to attend but would be interesed in anything that may be happening in Mich so if anyone knows of upcoming events in Michigan would like to attend just let me know. I missed the last meeting in Michigan as I thought my husband would want to go and he at the last minute decided not to attend so then I was not able to make arrangments for myself with such short notice. So in the futrue will know not to wait on him. As he seems to show no interest even thou he is the one with the illness. Will don't want to bore you to piecies so I will let you go for now. Thank you again for the input. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 What is an MDA center and where would we find one? Ann Beckner--renkceb@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Anne, Good to hear from you. I hope you and had good holidays. Craig and I were just thinking about you the other day. I'm sure you'll hear from lots of people but MDA is the Muscular Dystrophy Assn.--you know, the old Jerry telethon. You can check Thomson's website and she has a link that gives all the states. I'm betting that Don will write to you and let you know the one that it's in your area. 's website is http://www.geocities.com/mdmfoo/mda.htm Happy New Year (and Craig) Gentner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Bebe, I understand what you are going through. You are not alone. When I first developed symptoms 7 years ago one doctor told me it could be a brain tumor, spinal tumor or MS (Geeeeeee), then it took them about 6 months to run tests and determine that it was neither, but they didn't know what it was. After going to several neurologists over several years one finally said to me " go away and come back in a few years, either it will get better or it will get worse, if it gets worse then maybe we can find out what it is " .... talk about stress. Well finally it did get worse and a new doctor diagnoised me with PLS. Once I had a name for it I was able to find this and other sites and get a wealth of information. As many others have said, you have come to the right place. If there is an MDA center anywhere near you I would highly recommend that you make an appointment. The doctors at the MDA clinics are specialists in motor neuron diseases whereas a doctor who is " just " a neurologisit may not be up on all of the latest research and information on PLS/ALS. Don't worry about insurance coverage either, they will work with whatever insurance you have. Also, whichever the diagnosis turns out to be, they will help you obtain any medical equipment (ie, wheelchair) that you may eventually need. I would also suggest that you take an assertive approach with the doctors. Ask questions. If you are not happy with one doctor, find another. Be an active participate in your illness. It will help you to feel you have some control. You will find a great deal of emotional support from the people in this group. Good luck to you. Bonnie G - Phoenix - In PLS-FRIENDS@y..., " social1997 " <social1997@a...> wrote: > Hi: > Am new to this chat room because I am new to motor neuron > diseases.After 17 tests the doctors are positive that I have a motor > neuron disease. However, they don't know if it is an unusual > beginning of ALS or PLS. Right now I'm in a " waiting zone " . Playing > havoc with my emotions. > Would appreciate contact with anyone that might have suggestions or > who has had a similar experience. Right now I feel so alone. > Bebe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Thanks Bonnie for the info I do copy and also send things to his work. Sometimes he gives an opion some times don't just depends. I have a really hard time with all this as you all know I did have some thoughts of leaving but have not done that yet. Just don't know which way to turn sometimes. Will going to go now thanks again Bonnie. You and Don take care. Shirley Quote Link to comment Share on other sites More sharing options...
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