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...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Who was your neurologist at Hopkins? What kind of tests did they put you through and how long did this all take? I'm see a Dr. Reich, who recently moved from Hopkins to the Univ. of land. He was recommended by a friend who's a retired Hopkins professor and whose wife used Dr. Reich and a Hopkins neurosurgeon for her cervical spine surgery. Since that's one of the possible dx, I feel these doctors should be able to help. Thanks for your help. edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Who was your neurologist at Hopkins? What kind of tests did they put you through and how long did this all take? I'm see a Dr. Reich, who recently moved from Hopkins to the Univ. of land. He was recommended by a friend who's a retired Hopkins professor and whose wife used Dr. Reich and a Hopkins neurosurgeon for her cervical spine surgery. Since that's one of the possible dx, I feel these doctors should be able to help. Thanks for your help. edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 My ANA was pos. 20 years ago, but I was not sick. My neuro said my protein was slightly elevated in my spinal fluid. I wish you well, Donna > 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 My original appointment was set up with Rothsten (spelling ?), but got a call that Maragakus (spelling)could see me earlier. Rothsten is suppose to be the best in ALS, but I was so upset I went for the quicker appointment. I hope you find peace, like I did, when I finally learned my dx. I think giving the animal a name makes dealing with it easier. At least your mind don't run away with wild thoughts of the worse. I was subjected to the tap, walk and all the usual little test. Then I had an EMG but it was better than my first EMG since they used a baby needle on my tongue. I wish you the best and hope it is something you can get well from. Of course you know with PLS there is no cure. They will give you meds. to help the symptoms only. My best to you, Donna > Who was your neurologist at Hopkins? What kind of tests did they put you > through and how long did this all take? > > I'm see a Dr. Reich, who recently moved from Hopkins to the Univ. of > land. He was recommended by a friend who's a retired Hopkins professor and whose > wife used Dr. Reich and a Hopkins neurosurgeon for her cervical spine surgery. > Since that's one of the possible dx, I feel these doctors should be able to > help. > > Thanks for your help. > > edith > > > 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 Hi Edith, For me, the PLS diagnosis made the most sense. I was convinced I had PLS for almost a year prior to getting the final diagnosis. My neuro, Dr. Carmel Armon, wrote the PLS chapter for eMedicine, so he knows what he's talking about. He's also a very compassionate man and takes a great deal of time with me, answering any questions I might have. So I was extremely confident in him and in his diagnosis. He explained that he was 98% certain I had PLS, with the only other option ALS. He also assured me that the longer I went without lower motor neuron signs, the better my chances of PLS being the correct diagnosis. In the beginning I worried constantly about signs of atrophy, but now I don't really worry about ALS because I understand that even if I did develop LMN signs, my disease is fairly slow in progression so I have time, no matter what the final outcome. And that time will buy me a cure, knock on wood and the creek don't rise! It's better to believe in a cure than worry about how bad it might get. 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 Hi Edith, For me, the PLS diagnosis made the most sense. I was convinced I had PLS for almost a year prior to getting the final diagnosis. My neuro, Dr. Carmel Armon, wrote the PLS chapter for eMedicine, so he knows what he's talking about. He's also a very compassionate man and takes a great deal of time with me, answering any questions I might have. So I was extremely confident in him and in his diagnosis. He explained that he was 98% certain I had PLS, with the only other option ALS. He also assured me that the longer I went without lower motor neuron signs, the better my chances of PLS being the correct diagnosis. In the beginning I worried constantly about signs of atrophy, but now I don't really worry about ALS because I understand that even if I did develop LMN signs, my disease is fairly slow in progression so I have time, no matter what the final outcome. And that time will buy me a cure, knock on wood and the creek don't rise! It's better to believe in a cure than worry about how bad it might get. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2003 Report Share Posted June 25, 2003 HI JO, WHAT I WOULD LIKE TO KNOW IS HOW DO YOU GET AN APPOINTMENT AT CLEVELAND CLINIC? DON'S NURO WAS AN INTERN AT THE CLINIC AND HE HAS BEEN TRYING TO GET DON IN FOR A YEAR NOW AND THEY DO NOT RESPOND TO ANY REQUESTS. I CAN SEE IN THE FUTURE THAT WE WILL NEED SOME ASSISTANCE WITH EQUIPMENT FOR DON SINCE HE HAS ALS. DO YOU THINK WE SHOULD CONTACT THEM OURSELVES? PR DO WE NEED TO MOVE OUT OF STATE TO GET THEIR ATTENTION? SORRY, A LITTLE FRUSTRATION SHOWING BONNIE OH Re: PLS Specialists > 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 25, 2003 Report Share Posted June 25, 2003 HI JO, WHAT I WOULD LIKE TO KNOW IS HOW DO YOU GET AN APPOINTMENT AT CLEVELAND CLINIC? DON'S NURO WAS AN INTERN AT THE CLINIC AND HE HAS BEEN TRYING TO GET DON IN FOR A YEAR NOW AND THEY DO NOT RESPOND TO ANY REQUESTS. I CAN SEE IN THE FUTURE THAT WE WILL NEED SOME ASSISTANCE WITH EQUIPMENT FOR DON SINCE HE HAS ALS. DO YOU THINK WE SHOULD CONTACT THEM OURSELVES? PR DO WE NEED TO MOVE OUT OF STATE TO GET THEIR ATTENTION? SORRY, A LITTLE FRUSTRATION SHOWING BONNIE OH Re: PLS Specialists > 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 26, 2003 Report Share Posted June 26, 2003 Ronnie, who did you see at s Hopkins? Was it a good experience? Did you get a definitive diagnosis? I have an appointment on July 24. Thanks. Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Ronnie, who did you see at s Hopkins? Was it a good experience? Did you get a definitive diagnosis? I have an appointment on July 24. Thanks. Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Bonnie, Call them. I had two doctors " trying " to get me an appointment at s Hopkins. Finally, I called, on relay, yet, and got an appointment on the first call. No one there knew anything about anyone else calling..... Ronnie Re: PLS Specialists > > > > 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...
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