Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Emm, I was fortunate to have a neurologist who specialized in neuromuscular diseases and he was affiliated with our local MDA clinic. So I didn't have to go anywhere. He indicated that if I wanted to get a second opinion he would send me to Mayo Clinic in ville, FL. I think that is were it is, it was so long ago but I did go to his superior who is head of the MDA clinic here and he also confirmed the same diagnoses PLS. I felt very comfortable with his whole office...........If you feel that it is not PLS by all means go especially for insurance purposes or to file for Disability somewhere down the road.........Just a thought..........Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Emm: I HIGHLY recommend the Cleveland Clinic.... I had no idea how fortunate I am to live in Ohio. I have read about all the testing and mis-Dx-ing a lot of the people on here have had. My neuro at the Cleveland Clinic zeroed right in on the problem and, after ruling everything else out, Dx-ed me with PLS. At the Cleveland Clinic, they really know their stuff emmgreen2003 wrote: > I am aware that specialist are very hard to come by when it comes to > PLS, as statistics & odds of being diagnosed with PLS is so small > and infrequent. > > I had another visit with my local neurologist this week. He is > encouraging me to have another opinion but is indicating that I go to > Drs that are a bit more familiar with ALS and possibly PLS. > > His suggestion is to plan a possible trip from Massachusetts to some > place like the Cleveland Clinic, Ohio. > > I wanted to touch base with the members of PLS-Friends as to what > specialists or second opinion doctors you all have been to? Was your > Diagnosed confirmed by your original Neuro or a Neuro more > specialized? > > I really could use some support and feedback on this topic. > > Emm > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Emm ive been to 7 Neuro,s and 30docs. and nothing deffinite PLS Specialists I am aware that specialist are very hard to come by when it comes to PLS, as statistics & odds of being diagnosed with PLS is so small and infrequent. I had another visit with my local neurologist this week. He is encouraging me to have another opinion but is indicating that I go to Drs that are a bit more familiar with ALS and possibly PLS. His suggestion is to plan a possible trip from Massachusetts to some place like the Cleveland Clinic, Ohio. I wanted to touch base with the members of PLS-Friends as to what specialists or second opinion doctors you all have been to? Was your Diagnosed confirmed by your original Neuro or a Neuro more specialized? I really could use some support and feedback on this topic. Emm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Emm, I went to 3 ALS specialists and one general neuro over the course of 4 years and even they said " yes, you have a motor neuron disease, but we don't know what " . Finally, my neurologist mentioned PLS. I asked if he'd refer me to Mayo/Rochester and even told him the doctor that I wanted to see. He was surprised at how much research that I had done and said that he had referred patients to him before. At Mayo, I received a probable PLS dx. I think they were just waiting to see my progression to rule out ALS. I continue, every 6 months, to go to the UCSF ALS Center (San Francisco) and they have called me numerous times for additional research studies. Now, they even refer their newly diagnosed PLS patients to me for support information. There are several PLSers in your area so I'm sure someone can make a good recommendation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Emm, No need to go to Ohio. You have one of the best neurologists around right in your home state of Massachusetts. Dr. Brown is at Mass General Hospital. I drive up from CT to see him. I have been seeing him for 6 years. Dr. Brown spends a lot of time with me, answers all of my questions, and is always looking for new tests to perform, to rule out other possible causes of my symptoms. He is also a leader in ALS research, and may be doing some PLS research in the future. If you checked in PubMed, you'd see loads of research papers that he has written. He and Dr. Teepu Siddique of Northwestern University Medical School discovered the first familial ALS gene together (with loads of other collaborators) over a decade ago. They also both discovered the gene (ALS2) that causes juvenile ALS and PLS. You can't get any more cutting edge than Dr. Brown. He certainly knows his stuff. Mark Weber > I am aware that specialist are very hard to come by when it comes to > PLS, as statistics & odds of being diagnosed with PLS is so small > and infrequent. > > I had another visit with my local neurologist this week. He is > encouraging me to have another opinion but is indicating that I go to > Drs that are a bit more familiar with ALS and possibly PLS. > > His suggestion is to plan a possible trip from Massachusetts to some > place like the Cleveland Clinic, Ohio. > > I wanted to touch base with the members of PLS-Friends as to what > specialists or second opinion doctors you all have been to? Was your > Diagnosed confirmed by your original Neuro or a Neuro more > specialized? > > I really could use some support and feedback on this topic. > > Emm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Yes... I too have been to 6 different doctors over the last three years but none have been specilaized in ALS or PLS. I actually consider myself lucky that my present neurologist encouraged me for another opinion. (This will actually be the 3rd opinion by a Neuro) > Emm ive been to 7 Neuro,s and 30docs. and nothing deffinite > PLS Specialists > > > I am aware that specialist are very hard to come by when it comes to > PLS, as statistics & odds of being diagnosed with PLS is so small > and infrequent. > > I had another visit with my local neurologist this week. He is > encouraging me to have another opinion but is indicating that I go to > Drs that are a bit more familiar with ALS and possibly PLS. > > His suggestion is to plan a possible trip from Massachusetts to some > place like the Cleveland Clinic, Ohio. > > I wanted to touch base with the members of PLS-Friends as to what > specialists or second opinion doctors you all have been to? Was your > Diagnosed confirmed by your original Neuro or a Neuro more > specialized? > > I really could use some support and feedback on this topic. > > Emm > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 I was diagnosed in only one month after visiting the ALS Clinic at Columbia Presbyterian Hospital in New York City. They gave me every Mri, Xray, etc and told me immediately from my symptoms which started with a loss of speech that I had PLS. I feel they are truly wonderful Drs there. PLS Specialists > I am aware that specialist are very hard to come by when it comes to > PLS, as statistics & odds of being diagnosed with PLS is so small > and infrequent. > > I had another visit with my local neurologist this week. He is > encouraging me to have another opinion but is indicating that I go to > Drs that are a bit more familiar with ALS and possibly PLS. > > His suggestion is to plan a possible trip from Massachusetts to some > place like the Cleveland Clinic, Ohio. > > I wanted to touch base with the members of PLS-Friends as to what > specialists or second opinion doctors you all have been to? Was your > Diagnosed confirmed by your original Neuro or a Neuro more > specialized? > > I really could use some support and feedback on this topic. > > Emm > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 , That is exactly why I tossed this question into the ring of more experienced PLSers. Feedback from this group is very helpful. Part of me agrees with my present Neuro. He is the only doctor I've been to indicating PLS instead of MS. He feels that I should definitely have a more specialized doctor double check everything he has already tested me for to this point. AS he said - it's a very rare disorder, why wouldn't I want a confirmation from another source? But the other part of me wonders what if I go through all the hassle of getting time off of work, all the effort into arranging and coordinating my medical records and such, plus put out the money for travel, not only for myself but maybe my mother would accompany me. My quest to seek out a specialist may be a lot of hub-bub to simply come away knowing no-more than I do already? Just another " probably PLS " diagnose with a " lets wait and see " side note. Did you personally feel it was worth it or a waste? > Emm, > > I went to 3 ALS specialists and one general neuro over the course of 4 years > and even they said " yes, you have a motor neuron disease, but we don't know > what " . Finally, my neurologist mentioned PLS. I asked if he'd refer me to > Mayo/Rochester and even told him the doctor that I wanted to see. He was > surprised at how much research that I had done and said that he had referred patients > to him before. At Mayo, I received a probable PLS dx. I think they were just > waiting to see my progression to rule out ALS. > > I continue, every 6 months, to go to the UCSF ALS Center (San Francisco) and > they have called me numerous times for additional research studies. Now, they > even refer their newly diagnosed PLS patients to me for support information. > > There are several PLSers in your area so I'm sure someone can make a good > recommendation. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Ive been told that there are alot of diseases with the same symptoms so i geuss thats why it takes so long?But Good Luck GEO PLS Specialists > > > I am aware that specialist are very hard to come by when it comes to > PLS, as statistics & odds of being diagnosed with PLS is so small > and infrequent. > > I had another visit with my local neurologist this week. He is > encouraging me to have another opinion but is indicating that I go to > Drs that are a bit more familiar with ALS and possibly PLS. > > His suggestion is to plan a possible trip from Massachusetts to some > place like the Cleveland Clinic, Ohio. > > I wanted to touch base with the members of PLS-Friends as to what > specialists or second opinion doctors you all have been to? Was your > Diagnosed confirmed by your original Neuro or a Neuro more > specialized? > > I really could use some support and feedback on this topic. > > Emm > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 , Six years ago I faced the same questions that face you now. Should I see yet another physician, or simply stick with the one I have? If there is no treatment, what difference does it make? To me, seeking another neurologist made a difference. I decided to look for a neurologist who was a top notch researcher-- someone who would know the most recent info about PLS...perhaps even be the person developing the latest PLS research. I figured that once someone begins clinical trials on a PLS treatment, I'd want to be with a cutting edge researcher to maximize my chances of hearing about such a trial and then getting into it. Until then, I wanted to be kept informed of the scientific progress in understanding and curing this disorder. Both Thurza (the fabulous editor of Synapse -- see it at http://synapsepls.home.attbi.com/ ) and I see Dr. Brown of Mass General Hospital in Boston. Dr. Brown sees patients only on Tuesday mornings, so you'd have to wait months to see him. But it is worth the wait. IMHO. Other places to go include the Mayo Clinic, Northwestern University Medical School (Dr. Teepu Siddique), University of Michigan (Dr. Fink), and Loma University School of Medicine (Dr. Carmel Armon). (I know that I've missed many other excellent neurologists.) The National Organization of Rare Disorders (NORD) awarded Drs. Siddique and Fink each a $30,000 PLS research grant last year for their PLS research projects. Dr. Armon wrote an article about PLS on the web at the emedicine site (http://www.emedicine.com/NEURO/topic324.htm ). Mark Weber > , > > That is exactly why I tossed this question into the ring of more > experienced PLSers. Feedback from this group is very helpful. > > Part of me agrees with my present Neuro. He is the only doctor I've > been to indicating PLS instead of MS. He feels that I should > definitely have a more specialized doctor double check everything he > has already tested me for to this point. AS he said - it's a very > rare disorder, why wouldn't I want a confirmation from another source? > > But the other part of me wonders what if I go through all the hassle > of getting time off of work, all the effort into arranging and > coordinating my medical records and such, plus put out the money for > travel, not only for myself but maybe my mother would accompany me. > My quest to seek out a specialist may be a lot of hub-bub to simply > come away knowing no-more than I do already? Just another " probably > PLS " diagnose with a " lets wait and see " side note. > > Did you personally feel it was worth it or a waste? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 , I am in sort of a fix myself. I was dx. last November with PLS after having all the MRI's, MR Spectroscopys, spinal tap, blood work,emg, etc., etc. My neurologists is part of the only neuro group in town. He sent me to see a former collegue of his at Mt. Sinai hospital in NYC. They consulted with one another and decided PLS is what they will call it. My Symptoms are fasciculations, hyper-reflexes, clonus and spascity. You'd never know anything is wrong with me by looking. That was in Nov. Now I started walking funny because my foot was turning inward. Now I am the proud owner of an AFO. The local neuro thought I was progressing more rapid than he expected. So...I had another MRI and Spectroscopy. The first MRI showed an abnormality on my left motor cortes. The second showed an abnormality on the right and nothing on the left. My NCC/Creatine ratios were totally different. Last week I went to visit my neuro with lots of questions in hand. I walked away feeling like nothing was answered. He said maybe they looked at a different part of the cortex that gave the different readings. I really don't know. Maybe it was because the tests were done in different places, I really don't know. He has already suggested a baclofen pump or botox injections. I said NO WAY...I mean I haven't fallen or anything...so now I think I need to find a new neuro. I am his only experience with PLS. Like many folks here will tell you, sometimes we know more than the doctors. I am finding out that some doctors just don't like that. Because of those reasons I am looking for someone who can give me better answers. Hope this helps you. Cookie **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. > , > > Six years ago I faced the same questions that face you now. Should > I see yet another physician, or simply stick with the one I have? > If there is no treatment, what difference does it make? > > To me, seeking another neurologist made a difference. > > I decided to look for a neurologist who was a top notch researcher-- > someone who would know the most recent info about PLS...perhaps even > be the person developing the latest PLS research. > > I figured that once someone begins clinical trials on a PLS > treatment, I'd want to be with a cutting edge researcher to maximize > my chances of hearing about such a trial and then getting into it. > Until then, I wanted to be kept informed of the scientific progress > in understanding and curing this disorder. > > Both Thurza (the fabulous editor of Synapse -- see it at > http://synapsepls.home.attbi.com/ ) and I see Dr. Brown of > Mass General Hospital in Boston. Dr. Brown sees patients only on > Tuesday mornings, so you'd have to wait months to see him. But it > is worth the wait. IMHO. > > Other places to go include the Mayo Clinic, Northwestern University > Medical School (Dr. Teepu Siddique), University of Michigan (Dr. > Fink), and Loma University School of Medicine (Dr. Carmel > Armon). (I know that I've missed many other excellent > neurologists.) > > The National Organization of Rare Disorders (NORD) awarded Drs. > Siddique and Fink each a $30,000 PLS research grant last year for > their PLS research projects. Dr. Armon wrote an article about PLS > on the web at the emedicine site > (http://www.emedicine.com/NEURO/topic324.htm ). > > Mark Weber > > > > , > > > > That is exactly why I tossed this question into the ring of more > > experienced PLSers. Feedback from this group is very helpful. > > > > Part of me agrees with my present Neuro. He is the only doctor > I've > > been to indicating PLS instead of MS. He feels that I should > > definitely have a more specialized doctor double check everything > he > > has already tested me for to this point. AS he said - it's a very > > rare disorder, why wouldn't I want a confirmation from another > source? > > > > But the other part of me wonders what if I go through all the > hassle > > of getting time off of work, all the effort into arranging and > > coordinating my medical records and such, plus put out the money > for > > travel, not only for myself but maybe my mother would accompany > me. > > My quest to seek out a specialist may be a lot of hub-bub to > simply > > come away knowing no-more than I do already? Just > another " probably > > PLS " diagnose with a " lets wait and see " side note. > > > > Did you personally feel it was worth it or a waste? > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Dear Cookie you are so right i have to doubt someone who one time says the problems on one side and the next says its on the other ive been through 7 because im not satisfied a nurse told me you dont have to accept what they say you can have as many docs. as you wish did they show you the spect results and explain them to you what were your first symptoms mine was slurred speech and then swallowing cold liquids and then rapid movements (knocking on doors ) but i feel mine is an autoimmune problem as i have two other autoimmune diseases Psoriasis -Arthritis they say if you have one autoimmune disease you likely have more and mine began right after the flu indicating my immune system was over running as my Psoriasis started at the same exact time so im pushing for plasmapheresis and IVIG i maybe barking up the wrong tree but at least this way i dont start taking meds i dont need the plasma exchange is a gamble ide rather take than to think the next step from PLS is ALS esspecially when my EMG,S came out clean and thats how they were told to me if theyre ok then your ok no ALS LATER GEO Re: Re: PLS Specialists , I am in sort of a fix myself. I was dx. last November with PLS after having all the MRI's, MR Spectroscopys, spinal tap, blood work,emg, etc., etc. My neurologists is part of the only neuro group in town. He sent me to see a former collegue of his at Mt. Sinai hospital in NYC. They consulted with one another and decided PLS is what they will call it. My Symptoms are fasciculations, hyper-reflexes, clonus and spascity. You'd never know anything is wrong with me by looking. That was in Nov. Now I started walking funny because my foot was turning inward. Now I am the proud owner of an AFO. The local neuro thought I was progressing more rapid than he expected. So...I had another MRI and Spectroscopy. The first MRI showed an abnormality on my left motor cortes. The second showed an abnormality on the right and nothing on the left. My NCC/Creatine ratios were totally different. Last week I went to visit my neuro with lots of questions in hand. I walked away feeling like nothing was answered. He said maybe they looked at a different part of the cortex that gave the different readings. I really don't know. Maybe it was because the tests were done in different places, I really don't know. He has already suggested a baclofen pump or botox injections. I said NO WAY...I mean I haven't fallen or anything...so now I think I need to find a new neuro. I am his only experience with PLS. Like many folks here will tell you, sometimes we know more than the doctors. I am finding out that some doctors just don't like that. Because of those reasons I am looking for someone who can give me better answers. Hope this helps you. Cookie **************************** Man's way leads to a hopeless end..God's way leads to an endless hope. > , > > Six years ago I faced the same questions that face you now. Should > I see yet another physician, or simply stick with the one I have? > If there is no treatment, what difference does it make? > > To me, seeking another neurologist made a difference. > > I decided to look for a neurologist who was a top notch researcher-- > someone who would know the most recent info about PLS...perhaps even > be the person developing the latest PLS research. > > I figured that once someone begins clinical trials on a PLS > treatment, I'd want to be with a cutting edge researcher to maximize > my chances of hearing about such a trial and then getting into it. > Until then, I wanted to be kept informed of the scientific progress > in understanding and curing this disorder. > > Both Thurza (the fabulous editor of Synapse -- see it at > http://synapsepls.home.attbi.com/ ) and I see Dr. Brown of > Mass General Hospital in Boston. Dr. Brown sees patients only on > Tuesday mornings, so you'd have to wait months to see him. But it > is worth the wait. IMHO. > > Other places to go include the Mayo Clinic, Northwestern University > Medical School (Dr. Teepu Siddique), University of Michigan (Dr. > Fink), and Loma University School of Medicine (Dr. Carmel > Armon). (I know that I've missed many other excellent > neurologists.) > > The National Organization of Rare Disorders (NORD) awarded Drs. > Siddique and Fink each a $30,000 PLS research grant last year for > their PLS research projects. Dr. Armon wrote an article about PLS > on the web at the emedicine site > (http://www.emedicine.com/NEURO/topic324.htm ). > > Mark Weber > > > > , > > > > That is exactly why I tossed this question into the ring of more > > experienced PLSers. Feedback from this group is very helpful. > > > > Part of me agrees with my present Neuro. He is the only doctor > I've > > been to indicating PLS instead of MS. He feels that I should > > definitely have a more specialized doctor double check everything > he > > has already tested me for to this point. AS he said - it's a very > > rare disorder, why wouldn't I want a confirmation from another > source? > > > > But the other part of me wonders what if I go through all the > hassle > > of getting time off of work, all the effort into arranging and > > coordinating my medical records and such, plus put out the money > for > > travel, not only for myself but maybe my mother would accompany > me. > > My quest to seek out a specialist may be a lot of hub-bub to > simply > > come away knowing no-more than I do already? Just > another " probably > > PLS " diagnose with a " lets wait and see " side note. > > > > Did you personally feel it was worth it or a waste? > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Cookie: Read your post and had to pop in and get my two cents worth in. Having had PLS for over 30 years, you will never convince me that running around to all these different doctor's trying to find the magic cure for PLS is a waste of time and energy. There are " NO " answers! Just accept the diagnoses and live, gosh I get so frustrated when I read all these posting, and everybody thinks they no a miracle doctor, or a miracle treatment, believe me if there was one out there, don't you think after all these years I would no it by now? We are ALL DIFFERENT with Different symptoms, so just live life the best you can and deal with it. Thats how I have survived all these years. Only you the individual knows what works and what doesn't. It's called common sense. Happy Father's Day all you dads out there. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Hi , If you get a PLS diagnosis it may be well worth the investment. In many MDA clinics you are eligible for comprehensive services since many treat PLS as an ALS variant. Second, you have a diagnosis included under the ALS umbrella when it comes to the federal government- that means earlier eligibility for medicare. There may be other federal and state benefits that are easier to claim with a firm diagnosis. Also if PLS is diagnosed you can volunteer as a research subject- it won't help you directly but I have found it comforting to feel that I am at least helping as much as I can. Lavon At 06:49 PM 6/13/2003 +0000, you wrote: >, > >That is exactly why I tossed this question into the ring of more >experienced PLSers. Feedback from this group is very helpful. > >Part of me agrees with my present Neuro. He is the only doctor I've >been to indicating PLS instead of MS. He feels that I should >definitely have a more specialized doctor double check everything he >has already tested me for to this point. AS he said - it's a very >rare disorder, why wouldn't I want a confirmation from another source? > >But the other part of me wonders what if I go through all the hassle >of getting time off of work, all the effort into arranging and >coordinating my medical records and such, plus put out the money for >travel, not only for myself but maybe my mother would accompany me. >My quest to seek out a specialist may be a lot of hub-bub to simply >come away knowing no-more than I do already? Just another " probably >PLS " diagnose with a " lets wait and see " side note. > >Did you personally feel it was worth it or a waste? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Emm, I go to a neuro. who is an ALS specialists, he dx'ed me first with ALS then MS. I think he realized (after I was hospitalized) that I didn't have MS. Then the ALS specialists sent me to s Hopkins and they sent me back with possible ALS/PLS dx. Don and Mark said they didn't think I had ALS, or MS. That was a year before I went to Hopkins. Don and Mark WERE RIGHT! Thank God. I hope you dance again, Donna > I am aware that specialist are very hard to come by when it comes to > PLS, as statistics & odds of being diagnosed with PLS is so small > and infrequent. > > I had another visit with my local neurologist this week. He is > encouraging me to have another opinion but is indicating that I go to > Drs that are a bit more familiar with ALS and possibly PLS. > > His suggestion is to plan a possible trip from Massachusetts to some > place like the Cleveland Clinic, Ohio. > > I wanted to touch base with the members of PLS-Friends as to what > specialists or second opinion doctors you all have been to? Was your > Diagnosed confirmed by your original Neuro or a Neuro more > specialized? > > I really could use some support and feedback on this topic. > > Emm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Donna Thats why i say Autoimmune disease psoriasis artritis RA etc. where your immune system attacks the body lok into it ?GEO Re: PLS Specialists Emm, I go to a neuro. who is an ALS specialists, he dx'ed me first with ALS then MS. I think he realized (after I was hospitalized) that I didn't have MS. Then the ALS specialists sent me to s Hopkins and they sent me back with possible ALS/PLS dx. Don and Mark said they didn't think I had ALS, or MS. That was a year before I went to Hopkins. Don and Mark WERE RIGHT! Thank God. I hope you dance again, Donna > I am aware that specialist are very hard to come by when it comes to > PLS, as statistics & odds of being diagnosed with PLS is so small > and infrequent. > > I had another visit with my local neurologist this week. He is > encouraging me to have another opinion but is indicating that I go to > Drs that are a bit more familiar with ALS and possibly PLS. > > His suggestion is to plan a possible trip from Massachusetts to some > place like the Cleveland Clinic, Ohio. > > I wanted to touch base with the members of PLS-Friends as to what > specialists or second opinion doctors you all have been to? Was your > Diagnosed confirmed by your original Neuro or a Neuro more > specialized? > > I really could use some support and feedback on this topic. > > Emm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 I'm beginning to wonder if us " patients " know more than the big-time specialists. I'm working on an appointment at Hopkins in the hope that I will finally get a definitive diagnosis, but now I wonder. I've seen 4 neurologists and 3 neurosurgeons, with diagnoses from cervical and/or lumbar spinal cord compression (surgery recommended)to PLS, MS and even " simmering " vasculitis, whatever that is. I'm sure you all know the anxiety and fear I'm going through. Am I wrong in expecting an answer at Hopkins? Any other ideas? Thanks. Edith > > I am aware that specialist are very hard to come by when it comes > to > > PLS, as statistics & odds of being diagnosed with PLS is so small > > and infrequent. > > > > I had another visit with my local neurologist this week. He is > > encouraging me to have another opinion but is indicating that I go > to > > Drs that are a bit more familiar with ALS and possibly PLS. > > > > His suggestion is to plan a possible trip from Massachusetts to > some > > place like the Cleveland Clinic, Ohio. > > > > I wanted to touch base with the members of PLS-Friends as to what > > specialists or second opinion doctors you all have been to? Was > your > > Diagnosed confirmed by your original Neuro or a Neuro more > > specialized? > > > > I really could use some support and feedback on this topic. > > > > Emm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 I always thought this had something to do with autoimmune disease. I had a positive ANA test years before I came down with ALS. Donna > > I am aware that specialist are very hard to come by when it comes > to > > PLS, as statistics & odds of being diagnosed with PLS is so small > > and infrequent. > > > > I had another visit with my local neurologist this week. He is > > encouraging me to have another opinion but is indicating that I go > to > > Drs that are a bit more familiar with ALS and possibly PLS. > > > > His suggestion is to plan a possible trip from Massachusetts to > some > > place like the Cleveland Clinic, Ohio. > > > > I wanted to touch base with the members of PLS-Friends as to what > > specialists or second opinion doctors you all have been to? Was > your > > Diagnosed confirmed by your original Neuro or a Neuro more > > specialized? > > > > I really could use some support and feedback on this topic. > > > > Emm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Edith I know how you feel it seems like it takes forever to get the final word. I got my dx from Hopkins and I feel good about the way I was dx'd. My best to you, Donna > > > I am aware that specialist are very hard to come by when it > comes > > to > > > PLS, as statistics & odds of being diagnosed with PLS is so > small > > > and infrequent. > > > > > > I had another visit with my local neurologist this week. He is > > > encouraging me to have another opinion but is indicating that I > go > > to > > > Drs that are a bit more familiar with ALS and possibly PLS. > > > > > > His suggestion is to plan a possible trip from Massachusetts to > > some > > > place like the Cleveland Clinic, Ohio. > > > > > > I wanted to touch base with the members of PLS-Friends as to > what > > > specialists or second opinion doctors you all have been to? > Was > > your > > > Diagnosed confirmed by your original Neuro or a Neuro more > > > specialized? > > > > > > I really could use some support and feedback on this topic. > > > > > > Emm > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Edith as mywife says they are practicing medicine LOL ive been to 7 Neuros and 30 Md s Geo Re: PLS Specialists I'm beginning to wonder if us " patients " know more than the big-time specialists. I'm working on an appointment at Hopkins in the hope that I will finally get a definitive diagnosis, but now I wonder. I've seen 4 neurologists and 3 neurosurgeons, with diagnoses from cervical and/or lumbar spinal cord compression (surgery recommended)to PLS, MS and even " simmering " vasculitis, whatever that is. I'm sure you all know the anxiety and fear I'm going through. Am I wrong in expecting an answer at Hopkins? Any other ideas? Thanks. Edith > > I am aware that specialist are very hard to come by when it comes > to > > PLS, as statistics & odds of being diagnosed with PLS is so small > > and infrequent. > > > > I had another visit with my local neurologist this week. He is > > encouraging me to have another opinion but is indicating that I go > to > > Drs that are a bit more familiar with ALS and possibly PLS. > > > > His suggestion is to plan a possible trip from Massachusetts to > some > > place like the Cleveland Clinic, Ohio. > > > > I wanted to touch base with the members of PLS-Friends as to what > > specialists or second opinion doctors you all have been to? Was > your > > Diagnosed confirmed by your original Neuro or a Neuro more > > specialized? > > > > I really could use some support and feedback on this topic. > > > > Emm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 You mean PLS dont you ? if they came up with a positive on the ANNA why didnt they start you on plasmapheresis and IVIG ? Re: PLS Specialists I always thought this had something to do with autoimmune disease. I had a positive ANA test years before I came down with ALS. Donna > > I am aware that specialist are very hard to come by when it comes > to > > PLS, as statistics & odds of being diagnosed with PLS is so small > > and infrequent. > > > > I had another visit with my local neurologist this week. He is > > encouraging me to have another opinion but is indicating that I go > to > > Drs that are a bit more familiar with ALS and possibly PLS. > > > > His suggestion is to plan a possible trip from Massachusetts to > some > > place like the Cleveland Clinic, Ohio. > > > > I wanted to touch base with the members of PLS-Friends as to what > > specialists or second opinion doctors you all have been to? Was > your > > Diagnosed confirmed by your original Neuro or a Neuro more > > specialized? > > > > I really could use some support and feedback on this topic. > > > > Emm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 I worked in the hospital lab at the time I had a positive ANA test. They used my blood for the negative control, but it showed up positive. They drew it again thinking there could have been a mix- up, but it was still positive. I though I had Lupus, or would soon develope it. The doctors in the lab started running all kinds of test on me. They checked my liver and sent off blood. Everything was normal and they came to the conclusion it was a fluke. That was 20 years ago. Donna > > > I am aware that specialist are very hard to come by when it > comes > > to > > > PLS, as statistics & odds of being diagnosed with PLS is so > small > > > and infrequent. > > > > > > I had another visit with my local neurologist this week. He is > > > encouraging me to have another opinion but is indicating that > I go > > to > > > Drs that are a bit more familiar with ALS and possibly PLS. > > > > > > His suggestion is to plan a possible trip from Massachusetts > to > > some > > > place like the Cleveland Clinic, Ohio. > > > > > > I wanted to touch base with the members of PLS-Friends as to > what > > > specialists or second opinion doctors you all have been to? > Was > > your > > > Diagnosed confirmed by your original Neuro or a Neuro more > > > specialized? > > > > > > I really could use some support and feedback on this topic. > > > > > > Emm > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 I also had a positive ANA, 1:1280 and high sed rate. The rheumatologist did some more blood work, all was normal, I had no symptoms of lupus, so he said that many people have high ANA and are OK. Now, I'm wondering if this is part of the diagnostic process for PLS. I'm still waiting for an appointment at Hopkins to hopefully get some answers. I'd appreciate any responses regarding ANA and PLS. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 I also had a positive ANA, 1:1280 and high sed rate. The rheumatologist did some more blood work, all was normal, I had no symptoms of lupus, so he said that many people have high ANA and are OK. Now, I'm wondering if this is part of the diagnostic process for PLS. I'm still waiting for an appointment at Hopkins to hopefully get some answers. I'd appreciate any responses regarding ANA and PLS. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 So when does it stop? When do you get a dx you can believe, and find a neuro who can help? I've seen 4 neurologists and 3 neurosurgeons, and have gotten 4 different dx. That's why I'm working to go to Hopkins and the Univ. of land. edith Quote Link to comment Share on other sites More sharing options...
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