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Finally....A Diagnosis
For all of the forum members that have followed Craig's story since August, 2007, I wanted to let you know that he finally got a diagnosis today at NYU MS center. Things have been declining for Craig since November 2004, with lesions and brain atrophy since 2006. He had gone to Mayo Clinic, Mellen Center at Cleveland Clinic, National Institute of Health, and four other MS neurologists. Doctor shopping some would say, but I am a nurse and I wasn't going to let my husband go downhill without a fight.
All of them saw the positive Romberg, the leg weakness, the loss of balance, fatigue, heat intolerance, etc. But he was told it was depression, "in his head", referred to Parkinson neuros who turned around and said go to a MS neuro, and was even accused of causing his own leg spasticity. So we have been demoralized and thrown out of more than our share of neuro offices.
But thanks to Quix and some others on this forum, we felt support and knew enough to keep on. So, after a four month break from neuros, I made him an appt at NYU. I have seen Craig deteriorate neurologically and especially in the last year. He can't run, jump, or swim. He can only walk a few blocks without pain. He can't be out in the heat at all this summer. And I saw Joe Anthony's post about Dr. Herbert at NYU and that he was the one who diagnosed Montel Williams.
So with nervous stomachs, we went to the appt. The neuro (Herbert's associate), listened patiently to our story. He read every report, even noted the IGM monoclonal proteins in his CSF...the other neuros ignored this. He gave Craig a thorough neuro exam and was the first one to actually acknowledge the "0" score for reflexes below the knee. He was so alarmed to see that Craig could not walk one foot in front of the other...NYU uses tandem walking as a measure of neurological deficit and Craig could only take two steps.
So in the end, he thought, and thought. He looked at the brain MRI films.. He noted that Craig has small lesions...but said that YOU CAN HAVE MS WITH ATYPICAL BRAIN LESIONS. YOU DON'T NEED NINE OF A CERTAIN LENGTH ETC. He noted the normal LP. Then said YOU CAN HAVE MS WITH A NORMAL LP. AND IN EUROPE, THEY DON'T EVEN COUNT LP RESULTS IN MAKING A MS DIAGNOSIS.
HE SAID THAT YOU HAVE TO LISTEN TO THE PATIENT'S HISTORY AND LOOK AT THE PATIENT'S EXAM.
Wow, did I hear that right?? Does he know Quix????
He told Craig that the only possibel disease he could have is MS. And most likely Primary Progressive MS. He said that NYU has done their own trials showing that Copaxone helps stop the progression of PPMS in men. Not for everyone. But it is worth a try. He said PPMS acts like a recalcitrant child to treatment. He will also consider steroid infusions if the spine osteoporosis is improving. He ordered evoked potentials too.
We did not go to NYU with all of the other neuro reports. We went with two. He had no problem with the fact that we had gone to other places. He felt bad for Craig that he has had so much decline and had no treatment for it. That is one reason I think, that he went ahead and ordered the Copaxone right away. Craig will be on it for three months, and then will go back to NYU. to see if he has stopped getting worse.
I want to thank Quix for all of her knowledge.over the past year. She is right on with this MS information she gives us on this forum. Without her, I don't know what would have happened to Craig and I as each neuro told Craig that he has a mental problem. That can destroy a marriage as well as the person who is being told this. In fact, NIH had a psychiatrist come into the room when Craig was there and would have put him in a straight jacket and retained him if they could legally do so. I had doctors coming in to the room with me alone and they actually surrounded me and told me that my husband was not mentally competent. All of this because he did not meet their criteria for a study they brought him in for. One doctor at NIH wrote a report that Craig most likely had PPMS, but the others ignored it and chose to attack and frighten us. And that entire time, Quix and this forum was there for us. A beacon of hope and a refuge for all in limbo.
Thanks also to Zilla, and Heather, Rena, T-Lynn, Penn, Maggie, and so many others who have listened to us mope and whine and plead for understanding and support. There is no way we could have made this journey alone.
And for all of you limbo landers...keep on going to doctors. Don't take more than one or two reports from other neuros. Trust yourself and your instincts. And have faith that God will lead you to an answer.
And thanks JoeAnthony for mentioning NYU on the forum.
Elaine
All of them saw the positive Romberg, the leg weakness, the loss of balance, fatigue, heat intolerance, etc. But he was told it was depression, "in his head", referred to Parkinson neuros who turned around and said go to a MS neuro, and was even accused of causing his own leg spasticity. So we have been demoralized and thrown out of more than our share of neuro offices.
But thanks to Quix and some others on this forum, we felt support and knew enough to keep on. So, after a four month break from neuros, I made him an appt at NYU. I have seen Craig deteriorate neurologically and especially in the last year. He can't run, jump, or swim. He can only walk a few blocks without pain. He can't be out in the heat at all this summer. And I saw Joe Anthony's post about Dr. Herbert at NYU and that he was the one who diagnosed Montel Williams.
So with nervous stomachs, we went to the appt. The neuro (Herbert's associate), listened patiently to our story. He read every report, even noted the IGM monoclonal proteins in his CSF...the other neuros ignored this. He gave Craig a thorough neuro exam and was the first one to actually acknowledge the "0" score for reflexes below the knee. He was so alarmed to see that Craig could not walk one foot in front of the other...NYU uses tandem walking as a measure of neurological deficit and Craig could only take two steps.
So in the end, he thought, and thought. He looked at the brain MRI films.. He noted that Craig has small lesions...but said that YOU CAN HAVE MS WITH ATYPICAL BRAIN LESIONS. YOU DON'T NEED NINE OF A CERTAIN LENGTH ETC. He noted the normal LP. Then said YOU CAN HAVE MS WITH A NORMAL LP. AND IN EUROPE, THEY DON'T EVEN COUNT LP RESULTS IN MAKING A MS DIAGNOSIS.
HE SAID THAT YOU HAVE TO LISTEN TO THE PATIENT'S HISTORY AND LOOK AT THE PATIENT'S EXAM.
Wow, did I hear that right?? Does he know Quix????
He told Craig that the only possibel disease he could have is MS. And most likely Primary Progressive MS. He said that NYU has done their own trials showing that Copaxone helps stop the progression of PPMS in men. Not for everyone. But it is worth a try. He said PPMS acts like a recalcitrant child to treatment. He will also consider steroid infusions if the spine osteoporosis is improving. He ordered evoked potentials too.
We did not go to NYU with all of the other neuro reports. We went with two. He had no problem with the fact that we had gone to other places. He felt bad for Craig that he has had so much decline and had no treatment for it. That is one reason I think, that he went ahead and ordered the Copaxone right away. Craig will be on it for three months, and then will go back to NYU. to see if he has stopped getting worse.
I want to thank Quix for all of her knowledge.over the past year. She is right on with this MS information she gives us on this forum. Without her, I don't know what would have happened to Craig and I as each neuro told Craig that he has a mental problem. That can destroy a marriage as well as the person who is being told this. In fact, NIH had a psychiatrist come into the room when Craig was there and would have put him in a straight jacket and retained him if they could legally do so. I had doctors coming in to the room with me alone and they actually surrounded me and told me that my husband was not mentally competent. All of this because he did not meet their criteria for a study they brought him in for. One doctor at NIH wrote a report that Craig most likely had PPMS, but the others ignored it and chose to attack and frighten us. And that entire time, Quix and this forum was there for us. A beacon of hope and a refuge for all in limbo.
Thanks also to Zilla, and Heather, Rena, T-Lynn, Penn, Maggie, and so many others who have listened to us mope and whine and plead for understanding and support. There is no way we could have made this journey alone.
And for all of you limbo landers...keep on going to doctors. Don't take more than one or two reports from other neuros. Trust yourself and your instincts. And have faith that God will lead you to an answer.
And thanks JoeAnthony for mentioning NYU on the forum.
Elaine
For the first time...I think I am speechless. I have a lump the size of a chocolate cake in my throat and I am not sure what I am feeling. I am so happy that you finally have an "official" answer to your long arduous search! Yet I am feeling sad that for Craig, it's now real and tangible and a slap in the face that he was somewhat expecting but he waited so long it was no longer real... until today.
I am relieved that this horrible war you have been forced to wage is now over and it's time to get on with getting Craig to feel better and look into some options that weren't there yesterday. Yesterday may not have been so bad after all but hindsight is 20/20 and I hate hindsight don't you?
I wish that there was something more that I could do to show you how happy I am for you that there was a light at the tunnel and finally someone could reach it and there is no one that deserves it more than Elaine and Craig. The road has definitely been a rough one and I hope that Craig knows how valuable you have been Elaine because without you, would he have been able to keep on fighting? Elaine, take a bow...you deserve all the kudos that everyone here offers. You know that Craig feels the same way but he has some figuring to do right now and as always I am sure you will be by his side as you have for 27 years.
I hope that the two of you are able to go and celebrate your Anniversary without the cloud of MS hanging over you if only a few hours. Take the time to talk to each other about each other and the kids and anything else that puts a smile on your faces. You need to celebrate the ending of a hard journey and the beginning of a new one..still together, still in love.
Still Elaine and Craig...27 years later...Happy Anniversary!
Lots of Hugs,
Rena
I am relieved that this horrible war you have been forced to wage is now over and it's time to get on with getting Craig to feel better and look into some options that weren't there yesterday. Yesterday may not have been so bad after all but hindsight is 20/20 and I hate hindsight don't you?
I wish that there was something more that I could do to show you how happy I am for you that there was a light at the tunnel and finally someone could reach it and there is no one that deserves it more than Elaine and Craig. The road has definitely been a rough one and I hope that Craig knows how valuable you have been Elaine because without you, would he have been able to keep on fighting? Elaine, take a bow...you deserve all the kudos that everyone here offers. You know that Craig feels the same way but he has some figuring to do right now and as always I am sure you will be by his side as you have for 27 years.
I hope that the two of you are able to go and celebrate your Anniversary without the cloud of MS hanging over you if only a few hours. Take the time to talk to each other about each other and the kids and anything else that puts a smile on your faces. You need to celebrate the ending of a hard journey and the beginning of a new one..still together, still in love.
Still Elaine and Craig...27 years later...Happy Anniversary!
Lots of Hugs,
Rena
Dearest Craig and Elaine,
What bittersweet news. And hard now to be faced with the actual diagnosis. But it also gives you a label, which in your case will be good as it opens the door to treatment, and support. And hopefully people close to you (or at least enough of these) can be educated and will come round too.
Am so happy that you took this step to see this doctor. Validation that this is real and no more defective neuros to face. This will in the long run help.
I am so glad you have eachother. Craig is blessed to have you, and I'm sure that is mutual as you have surely got a strong marriage to be surviving all that has been thrown at you in the past year. He will deal with this better as it sinks in...... and of course having this diagnosis you will both go through your grieving process.
Thinking of and praying for you both. Keep us informed.
Sally
What bittersweet news. And hard now to be faced with the actual diagnosis. But it also gives you a label, which in your case will be good as it opens the door to treatment, and support. And hopefully people close to you (or at least enough of these) can be educated and will come round too.
Am so happy that you took this step to see this doctor. Validation that this is real and no more defective neuros to face. This will in the long run help.
I am so glad you have eachother. Craig is blessed to have you, and I'm sure that is mutual as you have surely got a strong marriage to be surviving all that has been thrown at you in the past year. He will deal with this better as it sinks in...... and of course having this diagnosis you will both go through your grieving process.
Thinking of and praying for you both. Keep us informed.
Sally
I am so happy for the both of you that someone finally listened. Words can not express what I feel right now but know that I'm so glad that you guys never gave up the fight. I always never understood why Craig wasn't DX. It must be wonderful having some validation. You guys are a wonderful example to us all. You give us hope that as long as we all keep fighting we will eventually find someone that will listen.
Love you Both
Love you Both
Well, thank you so much for all of your kind comments and well wishes. They are very much appreciated.
Craig is not taking the news well. He has heard PPMS before (from the one NIH doctor that was brave enough to say something) and from dear Quix, but it never hit home to him. In his mind, he was undiagnosed and could be in denial of his disease. That all changed today.
He is a bit upset with me for making the appt at NYU. He didn't want to go to more neurologists. But when he went to a PT evaluation as I was trying to get him some therapy, I was so saddened by the neurological deterioration that I had to do something.
So he is kind of blaming me for setting up this whole day. But as of now, he is starting to soften a bit. He is worried about how to raise a family and support them with a disease like PPMS. I am hoping the Delaware doctors will be more supportive. Craig has gone to therapists and physiatrists who are on the Delaware "MS Board", whatever that is, and they give me a blank look when I try and teach them about PPMS and why Craig has so many signs os spinal cord damage. Even the MS Board members of our state don't know what PPMS is. I made sure a report is being sent to the family doctor.
As with many other members I have seen post, our families are not very supportive. In fact, mine have not called to see how the appt went, and Craig's brother told me to move on without Craig and leave him to go on trips with our children. So the emotional abandonment has been very difficult. It isn't easy to have MS.
By the way, our 27th wedding anniversary is Friday. Bittersweet to say the least.
Thanks again everyone,
Elaine
Craig is not taking the news well. He has heard PPMS before (from the one NIH doctor that was brave enough to say something) and from dear Quix, but it never hit home to him. In his mind, he was undiagnosed and could be in denial of his disease. That all changed today.
He is a bit upset with me for making the appt at NYU. He didn't want to go to more neurologists. But when he went to a PT evaluation as I was trying to get him some therapy, I was so saddened by the neurological deterioration that I had to do something.
So he is kind of blaming me for setting up this whole day. But as of now, he is starting to soften a bit. He is worried about how to raise a family and support them with a disease like PPMS. I am hoping the Delaware doctors will be more supportive. Craig has gone to therapists and physiatrists who are on the Delaware "MS Board", whatever that is, and they give me a blank look when I try and teach them about PPMS and why Craig has so many signs os spinal cord damage. Even the MS Board members of our state don't know what PPMS is. I made sure a report is being sent to the family doctor.
As with many other members I have seen post, our families are not very supportive. In fact, mine have not called to see how the appt went, and Craig's brother told me to move on without Craig and leave him to go on trips with our children. So the emotional abandonment has been very difficult. It isn't easy to have MS.
By the way, our 27th wedding anniversary is Friday. Bittersweet to say the least.
Thanks again everyone,
Elaine
Dear Craig and Elaine,
I am so happy to hear you finally have a diagnosis and can not get on the road to treatment!
Sorry you had to have a dx of MS but at least now you know what it is. I felt a sense of relief with my dx because I finally knew what was wrong.
LA
I am so happy to hear you finally have a diagnosis and can not get on the road to treatment!
Sorry you had to have a dx of MS but at least now you know what it is. I felt a sense of relief with my dx because I finally knew what was wrong.
LA
I had to take a minute to go get a Kleenex. Once again, that strange feeling of feeling joy to know that someone important to me has heard bad news....but, oh, the validation, finally.
There is also the joy of hearing that the Copaxone might stop the progression in Craig. Am I correct in assuming that with treating his symptoms he can actually experience some improvement?
After all this time, fighting, holding fast, sharing your story and your strength, everything changes with one man that listens. Yes, you give hope and inspiration to us limbolanders.
You have always given us the benefit of you knowledge and experiences, and now you share with us the best story ever. I'll be waiting to hear more, and also be here as part of your forum family support net should things become rough. You have helped me personally with your advice, and I don't think I've told you how much I've appreciated that, and how much I've hoped for the best for you and Craig. Come to think of it, you passed on some advice from him, as I recall.
Many hugs and hopes for a brighter future,
Kathy
There is also the joy of hearing that the Copaxone might stop the progression in Craig. Am I correct in assuming that with treating his symptoms he can actually experience some improvement?
After all this time, fighting, holding fast, sharing your story and your strength, everything changes with one man that listens. Yes, you give hope and inspiration to us limbolanders.
You have always given us the benefit of you knowledge and experiences, and now you share with us the best story ever. I'll be waiting to hear more, and also be here as part of your forum family support net should things become rough. You have helped me personally with your advice, and I don't think I've told you how much I've appreciated that, and how much I've hoped for the best for you and Craig. Come to think of it, you passed on some advice from him, as I recall.
Many hugs and hopes for a brighter future,
Kathy
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