Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Rita,I have done a lot of fund raising for the MDA,I wiil find out for you,I will let you know in a few days. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Rita, PLS is one of their covered conditions, at least here in Colorado. I was referred to the clinic in Denver for possible rehab evaluation for HSP. My records weren't sent (nobody seemed to know what the other hand was doing at the clinic.), but without records, MRI's, etc. the doctor I saw was sure I have PLS. (I'm not so sure, but we'll see.) As a result, she introduced me to the MDA social worker, who has put me on the MDA mailing list. Since I'm not paying for their month magazine QUEST, I'm assuming PLS is a MDA covered condition. It sure wouldn't hurt you to ask them. By the way, I almost lived in Hollis from 85-89. They didn't have what my daughter needed at the high school there, so we wound up living in Derry, NH while my husband worked in MA. Hollis really is a beautiful little town -- much prettier than Derry. Hope you find help. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 You know, it does seem like everything we try to do is an uphill battle, isn't it? I am trying to find a scooter that will fit in the trunk of my car. My trunk is big and will hold the mechanical lift to get the scooter in and out. Sounds easy--right? Yeah, except that you have to lift the seat off the scooter in order to close your trunk and the seat weights 20-22 pounds!! Does that even begin to make sense? Who would be in the condition to need a scooter and a lift and still be able to lift a 22 pound seat? I don't honestly know how to solve this one. As far as the MDA goes, I think some states do recognize PLS under their umbrella, although national does not--or the other way around. It is a murky topic. Dolores MDA > Hi Folks: > > Well as most of you know I am looking for a van, and things are not > looking good for me. They are so expensive, and to find a good used one > seems almost impossible. The ones we have looked at are high mileage, > vehicles that people are trying to get rid of for that very same reason. > > I called the VA, and even though I am a vet, because my condition is not > service related they won't help. > > Now my question to you is regarding the MDA. Has anybody had any > experience dealing with them? If I were to buy a van (which we could > do), would they help with the conversion? We have been quoted $16,000 > for the conversion. Some one had suggested Easter Seals, but thought > that was birth defects. > > I would like some feedback on your experience with the MDA. I did go to > them back in 1986, and was told PLS was not one of there covered > diseases. Woe is me!!!! > > 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 > ************************************* > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Hey Rita, Ever listen to Car Talk on NPR? Tom and Ray? On their website (which you get to through cars.com) there is a section called Special Needs Zone in which there is a bulletin board called Special Needs Booth. It may be a long shot, but you could post what you need there. Maybe somebody is getting rid of exactly what you need. MDA Hi Folks: Well as most of you know I am looking for a van, and things are not looking good for me. They are so expensive, and to find a good used one seems almost impossible. The ones we have looked at are high mileage, vehicles that people are trying to get rid of for that very same reason. I called the VA, and even though I am a vet, because my condition is not service related they won't help. Now my question to you is regarding the MDA. Has anybody had any experience dealing with them? If I were to buy a van (which we could do), would they help with the conversion? We have been quoted $16,000 for the conversion. Some one had suggested Easter Seals, but thought that was birth defects. I would like some feedback on your experience with the MDA. I did go to them back in 1986, and was told PLS was not one of there covered diseases. Woe is me!!!! 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 ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Don and all you other folks. As you all might know, my daughter has been in contact with MDA National Headquarters in Arizona. She asked them " if PLS was covered " and they told her " yes " . Don you told me she was misinformed, and I sent her your letter's and she said " she never read them " . The person she spoke to called her back today and verified that PLS was covered by the MDA linked with ALS, and that I was eligible for their services. I was skeptical because of your letter Don. She advised my daughter to call MDA in Portland,Maine. My daughter called Maine, and the gal she spoke with also said PLS was covered. All I had to do was hookup with a MDA doctor who is familiar with PLS, register and thats all there is to it. Once I am registered I am entitled to all there services. I am waiting for the Lahey Clinic to call and they will set up an appointment with the MDA neurologist at that facility. In fact that is where I was diagnosed back in 1986, and Dr. Gross who diagnosed me is still on staff and could very well go back to see him. I don't know what happened to you Don, but my daughter asked why PLS was covered in some states and not in others and she was told, that it should not be. This all came about when my son-in-law (her husband) went to Lahey to get his own diagnosis of (MG) Myothenia Gravis (spelling ???). He mentioned to the doctor about me having PLS and this MDA doctor told him that PLS is covered. The rest is history. They also told my daughter that I mat eligible to receive $2000.00 towards my new Power Chair. Thats all I can tell you, and I guess it pays to do your homework. I will keep you posted on further developments. 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 September 4, 2002 Report Share Posted September 4, 2002 Don and all you other folks. As you all might know, my daughter has been in contact with MDA National Headquarters in Arizona. She asked them " if PLS was covered " and they told her " yes " . Don you told me she was misinformed, and I sent her your letter's and she said " she never read them " . The person she spoke to called her back today and verified that PLS was covered by the MDA linked with ALS, and that I was eligible for their services. I was skeptical because of your letter Don. She advised my daughter to call MDA in Portland,Maine. My daughter called Maine, and the gal she spoke with also said PLS was covered. All I had to do was hookup with a MDA doctor who is familiar with PLS, register and thats all there is to it. Once I am registered I am entitled to all there services. I am waiting for the Lahey Clinic to call and they will set up an appointment with the MDA neurologist at that facility. In fact that is where I was diagnosed back in 1986, and Dr. Gross who diagnosed me is still on staff and could very well go back to see him. I don't know what happened to you Don, but my daughter asked why PLS was covered in some states and not in others and she was told, that it should not be. This all came about when my son-in-law (her husband) went to Lahey to get his own diagnosis of (MG) Myothenia Gravis (spelling ???). He mentioned to the doctor about me having PLS and this MDA doctor told him that PLS is covered. The rest is history. They also told my daughter that I mat eligible to receive $2000.00 towards my new Power Chair. Thats all I can tell you, and I guess it pays to do your homework. I will keep you posted on further developments. 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 September 4, 2002 Report Share Posted September 4, 2002 Don and all you other folks. As you all might know, my daughter has been in contact with MDA National Headquarters in Arizona. She asked them " if PLS was covered " and they told her " yes " . Don you told me she was misinformed, and I sent her your letter's and she said " she never read them " . The person she spoke to called her back today and verified that PLS was covered by the MDA linked with ALS, and that I was eligible for their services. I was skeptical because of your letter Don. She advised my daughter to call MDA in Portland,Maine. My daughter called Maine, and the gal she spoke with also said PLS was covered. All I had to do was hookup with a MDA doctor who is familiar with PLS, register and thats all there is to it. Once I am registered I am entitled to all there services. I am waiting for the Lahey Clinic to call and they will set up an appointment with the MDA neurologist at that facility. In fact that is where I was diagnosed back in 1986, and Dr. Gross who diagnosed me is still on staff and could very well go back to see him. I don't know what happened to you Don, but my daughter asked why PLS was covered in some states and not in others and she was told, that it should not be. This all came about when my son-in-law (her husband) went to Lahey to get his own diagnosis of (MG) Myothenia Gravis (spelling ???). He mentioned to the doctor about me having PLS and this MDA doctor told him that PLS is covered. The rest is history. They also told my daughter that I mat eligible to receive $2000.00 towards my new Power Chair. Thats all I can tell you, and I guess it pays to do your homework. I will keep you posted on further developments. 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 September 4, 2002 Report Share Posted September 4, 2002 Hi folks. That sounds more in line with my experiences (dx'd first with ALS in 11/95 and now with PLS, even by MDA's own neurologist. I hope everything goes better with you. MDA Don : I received the copy of the answer to your question to the MDA relative to PLS. Now this is strange, our daughter when we told her about all that I have been going thru in the past month or so, contacted MDA Headquarter's in Arizona, and spoke with a young lady who said just the opposite. She told my daughter that PLS has been covered by the MDA since 1996, and because there is no MDA clinic here in NH, that I should contact the MDA in Portland Maine. She also told her of my current plight, and her comment was " poor thing " (me) that I should contact them immediately. Now how can that be? This is all so confusing to , that my daughter is taking over, and told me to sit tight. So I guess I will do that till she gets more info. She also said " that no state has the right to deny help to any PLS patient as of 1996 it was covered and treated under ALS " . When was that letter send to you? 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 October 21, 2002 Report Share Posted October 21, 2002 Rita, I think you did a really good job! Thanks for the report. 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 October 21, 2002 Report Share Posted October 21, 2002 Rita, Sounds like your visit to the Clinic went very well. You seem to feel at ease with both neurologists and believe they really listened to you. That is important. It helps to know someone cares enough to take the time to listen to something that sometimes cannot be fully described. You may have been educating them the whole time without knowing it. Sounds like you have fallen into a good group, sort of like PLS-FRIENDS. Certainly hope you can get some help from MDA with your van modification Good luck to you and , Mike ritadfromhollis@... wrote: > Hi All: > > Just got in from my appointment with Dr. and Dr. at the > MDA Clinic, at the Lahey Clinic just outside of Boston. What a > wonderful group. Dr. came in to do the preparation for Dr. > . She (Dr. ) was from Australia, and what a delight she > was. She had all my original records when I was diagnosed back in 1986, > We sat and talked for almost an hour and she was truly interested in > the fact that I had a problem since my late 20's but not diagnosed till > I was 50, she found this a fascinating fact. She had never encountered > anybody who had had PLS for so many years, and still be as functional as > I am. > > Then the big boy came in Dr. , what a wonderful man he was. He > went over everything with me into detail. He commended my current > neurologist and myself on how I have handled my having PLS, by stopping > work when I did, selling our home, and living in a handicapped > environment, where there is less physical stress on my body. I told > him, I have never fought this disease just went with it. As most of you > know I recently purchased a van, and Dr. called in a MDA social > worker. and she indicated that even though the MDA has it's limits, they > are there for anybody with a neuroligal problem like I have. She is > almost 100% sure the MDA will help me with funding to help modify the > van. I have to make some phone calls tomorrow to the right person to > find out. > > Then I asked Dr. the big question, and that was " why in so many > cases, is it so difficult to dx PLS " , and why are so many PLSer's worse > then other's. His explanation was " that there are so many different > types of neuromuscular diseases the mirror each other, that in many > cases a doctor uses a judgement call based on what we as patients tell > him because there are no specific test or x-rays that say of there it > is, she or he have PLS. He said that down the road other symptoms show > up that could change the diagnosis to full blown ALS or HSP or whatever! > He said that even in my case, where I have had PLS for 30 years, down > the road I could be given a different diagnosis " . I hope I am making > this clear, I am not very good at explaining medical terms, although he > made it very clear to and I, that I am very very lucky to have had > it for so long. > > He did make comments about Baclofan, that it does help spastic legs, and > to much can make the rubbery, and that any neurologist who knows what he > is doing, will monitor the baclofan very carefully, it very very > important to us the patient. His dead set against the Baclofan Pump, in > his opinion it's a waste, and that he has never seen anybody get up and > walk after having the pump installed (my neurologist feels the same > way). Don't jump on me for what he thinks, I am only the messenger. > > So he told me to keep doing what I am doing to maintain my quality of > life and he will see me in a year. He is the third doctor I have seen > over the past 16 years, who makes me feel like he knows what he is > talking about regarding PLS. > > So thats about it, from here. I have tried to explain my visit to the > best of my ability, like I said before I am just a Grandma doing the > best I can. > > 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 October 22, 2002 Report Share Posted October 22, 2002 Thanks Mike! 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 October 22, 2002 Report Share Posted October 22, 2002 Thanks Mike! 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 October 22, 2002 Report Share Posted October 22, 2002 Thanks Mike! 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 October 22, 2002 Report Share Posted October 22, 2002 > Hi All: > > Just got in from my appointment with Dr. Hi Rita, I had my appointment with Dr. last week! I like him a lot. He is an expert on ALS but also has a handful of PLS and HSP patients so he's pretty up to speed there, fortunately. We also talked a lot about PLS/HSP/ALS because a medical student was with him and he wanted her to learn about the differences. He showed off my hyper reflexes and clonus and how my legs are spastic as well as weak. It was a great opportunity to help her get to know these rare disorders, and I trust this will help her in the future when she has to diagnosis rare people like us. I had an easy time of diagnosis since my mother has HSP. I'd say I was " lucky " there, but I don't want to feel lucky to have this disorder! On the other hand, we were scared when my mom first walked funny when she was in her mid-40's. We were afraid it was ALS. There wasn't a family history, and it took a while to deduce it must be HSP. I hope we can do a big conference next year in Boston, and that Dr. might get involved. He always cares a lot about patients and isn't in a hurry to rush them off. I'm glad you got to see him. Looking forward to meeting you soon! Kathi SPF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 > Hi All: > > Just got in from my appointment with Dr. Hi Rita, I had my appointment with Dr. last week! I like him a lot. He is an expert on ALS but also has a handful of PLS and HSP patients so he's pretty up to speed there, fortunately. We also talked a lot about PLS/HSP/ALS because a medical student was with him and he wanted her to learn about the differences. He showed off my hyper reflexes and clonus and how my legs are spastic as well as weak. It was a great opportunity to help her get to know these rare disorders, and I trust this will help her in the future when she has to diagnosis rare people like us. I had an easy time of diagnosis since my mother has HSP. I'd say I was " lucky " there, but I don't want to feel lucky to have this disorder! On the other hand, we were scared when my mom first walked funny when she was in her mid-40's. We were afraid it was ALS. There wasn't a family history, and it took a while to deduce it must be HSP. I hope we can do a big conference next year in Boston, and that Dr. might get involved. He always cares a lot about patients and isn't in a hurry to rush them off. I'm glad you got to see him. Looking forward to meeting you soon! Kathi SPF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 > Hi All: > > Just got in from my appointment with Dr. Hi Rita, I had my appointment with Dr. last week! I like him a lot. He is an expert on ALS but also has a handful of PLS and HSP patients so he's pretty up to speed there, fortunately. We also talked a lot about PLS/HSP/ALS because a medical student was with him and he wanted her to learn about the differences. He showed off my hyper reflexes and clonus and how my legs are spastic as well as weak. It was a great opportunity to help her get to know these rare disorders, and I trust this will help her in the future when she has to diagnosis rare people like us. I had an easy time of diagnosis since my mother has HSP. I'd say I was " lucky " there, but I don't want to feel lucky to have this disorder! On the other hand, we were scared when my mom first walked funny when she was in her mid-40's. We were afraid it was ALS. There wasn't a family history, and it took a while to deduce it must be HSP. I hope we can do a big conference next year in Boston, and that Dr. might get involved. He always cares a lot about patients and isn't in a hurry to rush them off. I'm glad you got to see him. Looking forward to meeting you soon! Kathi SPF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 Hi Kathi: Wouldn't that be great! See you at Skips. 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 October 22, 2002 Report Share Posted October 22, 2002 Hi Kathi: Wouldn't that be great! See you at Skips. 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 October 23, 2002 Report Share Posted October 23, 2002 What is HSP? I am having huge muscle twithces at night..... am taking Clonazepam but it doesn't seem to help. Had adverse reactions to Baclofen. Raine This is sent with Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Dr. of the MDA, indicated to me (and I will probably screw this up), said in his opinion, there is a bad male gene, and a bad female gene, and it can go back generations, and passed on to one another and never surface until they get into our system, and bingo, PLS. In other words, it may take many generations for the two genes to hookup. Did I explain that correctly???? 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 October 24, 2002 Report Share Posted October 24, 2002 Thanks, Melinda. I have pain associated with my PLS in the form of muscle strain. This is from Dr. Armon's PLS paper (I'm always quoting this paper, sorry about that :-)...): http://www.emedicine.com/neuro/topic324.htm a.. PLS usually presents with gradual-onset, progressive, lower-extremity stiffness and pain due to spasticity. a.. As PLS progresses, patients may develop balance problems with a tendency to fall. Axial muscle involvement may result in lower back and neck pain, which may aggravate back or neck pain from other causes (eg, degenerative disc disease, osteoporosis). a.. Physical therapy: Stretching exercises, usually used in combination with pharmacologic treatment, may help alleviate spasticity. A program of stretching/strengthening exercises, which may be done at home, may promote full range of joint motion and reduce the risk of contractures. Patients who are weak may require passive range of motion exercises to be administered by their caregivers. Attempting to overcome severe spasticity with physical therapy alone may result in torn or strained muscles or tendons. Hence, physical therapy that causes pain should be avoided or modified. Other modalities, such as massage or pool therapy, may provide symptomatic relief. Dr. Armon, Dr. Siddique and Dr. Fink are all going to be at the California Connection this Saturday, San Diego, CA. I'd be happy to ask them any specific questions anyone might have. Just get them to me ASAP! :-) Label them: Questions for Drs 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 October 24, 2002 Report Share Posted October 24, 2002 Thanks, Melinda. I have pain associated with my PLS in the form of muscle strain. This is from Dr. Armon's PLS paper (I'm always quoting this paper, sorry about that :-)...): http://www.emedicine.com/neuro/topic324.htm a.. PLS usually presents with gradual-onset, progressive, lower-extremity stiffness and pain due to spasticity. a.. As PLS progresses, patients may develop balance problems with a tendency to fall. Axial muscle involvement may result in lower back and neck pain, which may aggravate back or neck pain from other causes (eg, degenerative disc disease, osteoporosis). a.. Physical therapy: Stretching exercises, usually used in combination with pharmacologic treatment, may help alleviate spasticity. A program of stretching/strengthening exercises, which may be done at home, may promote full range of joint motion and reduce the risk of contractures. Patients who are weak may require passive range of motion exercises to be administered by their caregivers. Attempting to overcome severe spasticity with physical therapy alone may result in torn or strained muscles or tendons. Hence, physical therapy that causes pain should be avoided or modified. Other modalities, such as massage or pool therapy, may provide symptomatic relief. Dr. Armon, Dr. Siddique and Dr. Fink are all going to be at the California Connection this Saturday, San Diego, CA. I'd be happy to ask them any specific questions anyone might have. Just get them to me ASAP! :-) Label them: Questions for Drs 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 October 24, 2002 Report Share Posted October 24, 2002 Thanks, Melinda. I have pain associated with my PLS in the form of muscle strain. This is from Dr. Armon's PLS paper (I'm always quoting this paper, sorry about that :-)...): http://www.emedicine.com/neuro/topic324.htm a.. PLS usually presents with gradual-onset, progressive, lower-extremity stiffness and pain due to spasticity. a.. As PLS progresses, patients may develop balance problems with a tendency to fall. Axial muscle involvement may result in lower back and neck pain, which may aggravate back or neck pain from other causes (eg, degenerative disc disease, osteoporosis). a.. Physical therapy: Stretching exercises, usually used in combination with pharmacologic treatment, may help alleviate spasticity. A program of stretching/strengthening exercises, which may be done at home, may promote full range of joint motion and reduce the risk of contractures. Patients who are weak may require passive range of motion exercises to be administered by their caregivers. Attempting to overcome severe spasticity with physical therapy alone may result in torn or strained muscles or tendons. Hence, physical therapy that causes pain should be avoided or modified. Other modalities, such as massage or pool therapy, may provide symptomatic relief. Dr. Armon, Dr. Siddique and Dr. Fink are all going to be at the California Connection this Saturday, San Diego, CA. I'd be happy to ask them any specific questions anyone might have. Just get them to me ASAP! :-) Label them: Questions for Drs 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 October 24, 2002 Report Share Posted October 24, 2002 , Can you tell me what, if known, is the youngest PLS onset? I was 15 years old when my 'complications' started. They thought that maybe I had MS because I had a second cousin who was diagnosed with MS. In the end they called it spastic paraparesis. In 1997, my current neurologist gave me a diagnosis of PLS. Also, my spine is deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. In 1989, I broke my leg in two places and still have the rod and pins in the leg (I wasn't even having a good time when it happened). It is hard for me and maybe unnecessary to distinguish what pain belongs to what. Anyway, I have always wondered if the deteriorating spine came first or the PLS or are they the same thing. Can you provide any data? Thanks. kathy hillary Thomson wrote: > Melinda, > I thought I'd try to answer your question about family history of PLS. > Most of the data available states that PLS is a sporadic disease but there is a rare, childhood onset form that is familial. It is very rare. In fact, the gene was just found for this form of PLS last year and was linked to the rare form of ALS that is also childhood onset and slow in progression. > By the same token, it is possible that there are familial cases of PLS but they haven't been officially documented. It is really important that each and every person that has a diagnosis of PLS, or suspected PLS, participate in the blood marker study so that we can find out more about our disease. It is even more important that anyone suspecting family history participates. They might provide the key needed to give the researchers the answer they are looking for. All it takes is one family! > Please ask your husband and his cousin to participate in the our research. It is easy and almost painless (just a blood draw). > Here is some information for you: > > December 11, 2001 > > Dear Member of the PLS community, > > Our Neuromuscular Disorders Program is continuing a study involving sporadic (or non-inherited) diseases of the motor neurons, such as PLS and ALS, that we thought might be of interest to you. As you know, the cause(s) of these disorders are not known. We are interested in determining whether genetic factors may " predispose " an individual to developing sporadic cases of ALS and PLS. We suspect that sporadic cases of these disorders may be the result of not one, but several genetic factors coming together. Recent advances in the field of statistical genetics make it possible to answer such questions if there are sufficient study participants available. > > Blood samples from patients and their living parents and brothers and sisters are needed for this study. We need 400 sets of samples from a patient and both of that patient's parents for each disease. Additionally, we need 400 sets of samples from a patient and that patient's brother or sister, who is preferably at least as old as the patient was when he or she first noted symptoms of the disease. > > We need 2 tablespoons of blood from each participant. We will supply the needed tubes and instructions for returning the samples via Federal Express without charge to the participants. Most physicians and labs will draw the samples without charge, but we will pay for drawing of samples if applicable. > > Obviously there will not be an immediate benefit to patients, but an understanding of the causes of disease of the motor neuron may eventually benefit patients with these diseases. > > Anyone willing to participate in this study, or wishing to discuss it, please contact us. We look forward to working with you on this endeavor. > > Dellafave MS > Nailah Siddique RN MSN > Teepu Siddique MD > > Genetic Counseling > Clinical Nurse Specialist > Director, Neuromuscular Disorders Program > > > > Professor of Neurology > > 1-dellafave@... > nsiddique@... > Professor of Cell and Molecular Biology > > > If you would like to participate in this study, please register on the research page or contact Nailah directly. > > If you are unable to participate in this research study (or did so already), and would be interested in participating in future studies, please register on the research page. > > You can also register from the website: > > http://www.als-pls.org/research.htm > > > 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 October 24, 2002 Report Share Posted October 24, 2002 , Can you tell me what, if known, is the youngest PLS onset? I was 15 years old when my 'complications' started. They thought that maybe I had MS because I had a second cousin who was diagnosed with MS. In the end they called it spastic paraparesis. In 1997, my current neurologist gave me a diagnosis of PLS. Also, my spine is deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. In 1989, I broke my leg in two places and still have the rod and pins in the leg (I wasn't even having a good time when it happened). It is hard for me and maybe unnecessary to distinguish what pain belongs to what. Anyway, I have always wondered if the deteriorating spine came first or the PLS or are they the same thing. Can you provide any data? Thanks. kathy hillary Thomson wrote: > Melinda, > I thought I'd try to answer your question about family history of PLS. > Most of the data available states that PLS is a sporadic disease but there is a rare, childhood onset form that is familial. It is very rare. In fact, the gene was just found for this form of PLS last year and was linked to the rare form of ALS that is also childhood onset and slow in progression. > By the same token, it is possible that there are familial cases of PLS but they haven't been officially documented. It is really important that each and every person that has a diagnosis of PLS, or suspected PLS, participate in the blood marker study so that we can find out more about our disease. It is even more important that anyone suspecting family history participates. They might provide the key needed to give the researchers the answer they are looking for. All it takes is one family! > Please ask your husband and his cousin to participate in the our research. It is easy and almost painless (just a blood draw). > Here is some information for you: > > December 11, 2001 > > Dear Member of the PLS community, > > Our Neuromuscular Disorders Program is continuing a study involving sporadic (or non-inherited) diseases of the motor neurons, such as PLS and ALS, that we thought might be of interest to you. As you know, the cause(s) of these disorders are not known. We are interested in determining whether genetic factors may " predispose " an individual to developing sporadic cases of ALS and PLS. We suspect that sporadic cases of these disorders may be the result of not one, but several genetic factors coming together. Recent advances in the field of statistical genetics make it possible to answer such questions if there are sufficient study participants available. > > Blood samples from patients and their living parents and brothers and sisters are needed for this study. We need 400 sets of samples from a patient and both of that patient's parents for each disease. Additionally, we need 400 sets of samples from a patient and that patient's brother or sister, who is preferably at least as old as the patient was when he or she first noted symptoms of the disease. > > We need 2 tablespoons of blood from each participant. We will supply the needed tubes and instructions for returning the samples via Federal Express without charge to the participants. Most physicians and labs will draw the samples without charge, but we will pay for drawing of samples if applicable. > > Obviously there will not be an immediate benefit to patients, but an understanding of the causes of disease of the motor neuron may eventually benefit patients with these diseases. > > Anyone willing to participate in this study, or wishing to discuss it, please contact us. We look forward to working with you on this endeavor. > > Dellafave MS > Nailah Siddique RN MSN > Teepu Siddique MD > > Genetic Counseling > Clinical Nurse Specialist > Director, Neuromuscular Disorders Program > > > > Professor of Neurology > > 1-dellafave@... > nsiddique@... > Professor of Cell and Molecular Biology > > > If you would like to participate in this study, please register on the research page or contact Nailah directly. > > If you are unable to participate in this research study (or did so already), and would be interested in participating in future studies, please register on the research page. > > You can also register from the website: > > http://www.als-pls.org/research.htm > > > 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...
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