Comments on: Charting the course of PLS and PMA http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/ PatientsLikeMe - Patients helping patients live better every day Wed, 16 May 2012 21:10:35 +0000 http://wordpress.org/?v=2.7 hourly 1 By: SEO http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-119147 SEO Wed, 02 May 2012 21:23:46 +0000 http://blog.patientslikeme.com/?p=1047#comment-119147 <strong>SEO...</strong> [...]The Value of Openness: The PatientsLikeMe Blog » Charting the course of PLS and PMA[...]... SEO…

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]]> By: Susan Jockers http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-44110 Susan Jockers Tue, 12 Oct 2010 03:17:37 +0000 http://blog.patientslikeme.com/?p=1047#comment-44110 There is very little on 'straight' PLS even on PUBMED. I feel that the symptoms list could be enlarged and refined a bit more, based on the reported symptoms on the Forums. And since the cause is not yet known, how about a medical history questionaire? For instance, vitamin D deficiencies. At 2 people so far have had them. What about autoimmune tests- I know I have had most of them. Allergies?, etc. I have copies of all my lab and test results, and probably alot of PLSers do. I've been trying to figure out how to make a forum questionaire, just to compare me with the other folks. I'd be happy to volunteer some time, especially if it would help add more knowledge about the disease. There is very little on ’straight’ PLS even on PUBMED. I feel that the symptoms list could be enlarged and refined a bit more, based on the reported symptoms on the Forums. And since the cause is not yet known, how about a medical history questionaire?
For instance, vitamin D deficiencies. At 2 people so far have had them. What about autoimmune tests- I know I have had most of them. Allergies?, etc. I have copies of all my lab and test results, and probably alot of PLSers do.
I’ve been trying to figure out how to make a forum questionaire, just to compare me with the other folks.
I’d be happy to volunteer some time, especially if it would help add more knowledge about the disease.

]]> By: Mary Beth Rivetti http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-36155 Mary Beth Rivetti Tue, 08 Jun 2010 01:02:59 +0000 http://blog.patientslikeme.com/?p=1047#comment-36155 This is very interesting. Last year my husband died 18 months after being diagnosed with Corticobasal degeneration. Autopsy of his brain tissue however revealed that he had Primary Lateral Sclerosis. His progression was probably much closer to ALS. The letter from the Mayo Clinic indicated that they had never studied someone presenting with asymmetrical involvement (which is why three neurologists concurred in the CBD diagnosis). This is very interesting. Last year my husband died 18 months after being diagnosed with Corticobasal degeneration. Autopsy of his brain tissue however revealed that he had Primary Lateral Sclerosis. His progression was probably much closer to ALS. The letter from the Mayo Clinic indicated that they had never studied someone presenting with asymmetrical involvement (which is why three neurologists concurred in the CBD diagnosis).

]]> By: Paul Wicks http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-26440 Paul Wicks Fri, 30 Oct 2009 17:53:07 +0000 http://blog.patientslikeme.com/?p=1047#comment-26440 Dear Jason, At the moment people who have had bulbar-onset ALS can record that in their profile and you can search for them using our advanced search feature. We haven't yet looked into whether it would be useful to have separate percentile curves for bulbar-onset patients, good idea! Best wishes Paul Dear Jason,

At the moment people who have had bulbar-onset ALS can record that in their profile and you can search for them using our advanced search feature. We haven’t yet looked into whether it would be useful to have separate percentile curves for bulbar-onset patients, good idea!

Best wishes

Paul

]]> By: Jason Scott http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-26245 Jason Scott Wed, 28 Oct 2009 13:06:01 +0000 http://blog.patientslikeme.com/?p=1047#comment-26245 any plans to include PBP any plans to include PBP

]]> By: Nola Borg http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-26102 Nola Borg Mon, 26 Oct 2009 17:38:44 +0000 http://blog.patientslikeme.com/?p=1047#comment-26102 Russ - I just realised that on my profile, somebody changed my diagnosis from ALS to PLS. From what I'm reading, I'm not sure that I disagree. But I've been twice diagnosed with ALS and that's what I initially entered. What's up? Look forward to hearing from you. Thanks. Nola Russ - I just realised that on my profile, somebody changed my diagnosis from ALS to PLS. From what I’m reading, I’m not sure that I disagree. But I’ve been twice diagnosed with ALS and that’s what I initially entered. What’s up?

Look forward to hearing from you.

Thanks.

Nola

]]> By: Paul Wicks http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-25066 Paul Wicks Fri, 18 Sep 2009 19:50:50 +0000 http://blog.patientslikeme.com/?p=1047#comment-25066 Russ - It's always hard to tell exactly what is going on; the important thing is to be asssessed by a neurologist who is willing to consider that PLS and PMA are possibility alongside ALS. Some say you need to have a total absence of LMN signs for 3-5 years to be PLS, others have a different view. As you say, atrophy can be caused by immobility not just motor neuron function so it's hard to work out. If you did change your dx (after speaking to your neurologist) then your data will be preserved and you will stay in the wider ALS community, you'd just get a different backdrop for your percentile curves and your stickman would change. Hans - Eventually it is our aim to have a community for every life-changing illness that exists. There are some unique challenges to illnesses where the patient is a child, and we would want to add some more family history / genetics tools to do SMA well, but yes, like all these unpleasant conditions it is on our radar screen. Thanks for your comment. Paul Wicks, PhD R&D Director, PatientsLikeMe Russ - It’s always hard to tell exactly what is going on; the important thing is to be asssessed by a neurologist who is willing to consider that PLS and PMA are possibility alongside ALS. Some say you need to have a total absence of LMN signs for 3-5 years to be PLS, others have a different view. As you say, atrophy can be caused by immobility not just motor neuron function so it’s hard to work out. If you did change your dx (after speaking to your neurologist) then your data will be preserved and you will stay in the wider ALS community, you’d just get a different backdrop for your percentile curves and your stickman would change.

Hans - Eventually it is our aim to have a community for every life-changing illness that exists. There are some unique challenges to illnesses where the patient is a child, and we would want to add some more family history / genetics tools to do SMA well, but yes, like all these unpleasant conditions it is on our radar screen. Thanks for your comment.

Paul Wicks, PhD
R&D Director, PatientsLikeMe

]]> By: Russ Conley http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-25036 Russ Conley Thu, 17 Sep 2009 23:41:48 +0000 http://blog.patientslikeme.com/?p=1047#comment-25036 I have been in PLM since my dx 11/06 and have been considering my symptoms and I don't seem to have at least yet the lmn symptoms of constant twitching and rapid muscle atrophy. I do have twitching at times but they don't last more than a few minutes. I do have some muscle atrophy in my lower legs, but this is after 2 1/2 years. My weight has increased since dx do to lack of exercise, but I am thinking I have PLS. If I change my dx now will this screw up the data? What are the FRS scores going to do? etc? Thanks, Russ I have been in PLM since my dx 11/06 and have been considering my symptoms and I don’t seem to have at least yet the lmn symptoms of constant twitching and rapid muscle atrophy. I do have twitching at times but they don’t last more than a few minutes. I do have some muscle atrophy in my lower legs, but this is after 2 1/2 years. My weight has increased since dx do to lack of exercise, but I am thinking I have PLS. If I change my dx now will this screw up the data? What are the FRS scores going to do? etc?

Thanks,
Russ

]]> By: Hans Koch http://blog.patientslikeme.com/2009/08/11/charting-the-course-of-pls-and-pma/comment-page-1/#comment-25029 Hans Koch Thu, 17 Sep 2009 20:05:37 +0000 http://blog.patientslikeme.com/?p=1047#comment-25029 Hi, very impressive! I hope you will expand to SMA soon, because i have been contacted by a lady whose child has this disease. Luckily it's type II. thanks, Hans Hi, very impressive! I hope you will expand to SMA soon, because i have been contacted by a lady whose child has this disease. Luckily it’s type II. thanks, Hans

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