Aa
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
I'm sorry Craig has the less-treatable form, but they're coming up with new things every day. Even so, vindication is something, isn't it? You both knew you weren't crazy or faking anything. Hooray for NYU!
Holly
Holly
Please Doc Q, can you make this a health page? Looks ready to me.
Elaine,
How are Craig's spirits?
xoxox
Shelly
Elaine,
How are Craig's spirits?
xoxox
Shelly
I came to the forum about a year into Craig's journey, so I missed a lot of the early information about him, but thanks to you Elaine have been able to catch up through your posts.
What a hard road you both have had, and what courage it has taken to stick to the fight!! I truly admire you both!! I was so relieved to hear that Craig now has a diagnosis, and will Finally be receiving the treatment he has been denied for far too long by ignorance of some!!
I will be praying for both Craig and you, and watching for any update on his condition!!
Hugs & Prayers,
~Santana~
What a hard road you both have had, and what courage it has taken to stick to the fight!! I truly admire you both!! I was so relieved to hear that Craig now has a diagnosis, and will Finally be receiving the treatment he has been denied for far too long by ignorance of some!!
I will be praying for both Craig and you, and watching for any update on his condition!!
Hugs & Prayers,
~Santana~
I just deleted a pretty bitter post about my own experiences. Everyone's heard it before. I'm glad Craig now has a diagnosis. And hopeful treatment.
I say we all get a huge bus and go to NYU where they actually take into account the patient and his/her history and signs and symptoms! Any takers? We'll call it the LimboLand Express!
Zilla*
I say we all get a huge bus and go to NYU where they actually take into account the patient and his/her history and signs and symptoms! Any takers? We'll call it the LimboLand Express!
Zilla*
Back in 1995 when I first presented with symptoms of MS, my first Neuro proclaimed after my first examination, that he felt like I had MS. First thing out of his mouth. This is before any fancy testing of MRI's and the like.
He told me that while he felt that his prediction was correct, the MRI's slamed it home for him. So, I guess you are totally correct. MS can indeed be diagnosed from presentation and examination, before any further testing is done.
Heather
He told me that while he felt that his prediction was correct, the MRI's slamed it home for him. So, I guess you are totally correct. MS can indeed be diagnosed from presentation and examination, before any further testing is done.
Heather
Hi, yes you are spot on. Many doctors seem to have forgotten clinical skills and rely only on blood tests and imaging results.
I just had a recent taste of that. Imagine my Obe was saying appendicitis for 3 months and sent me to many gastro doctors for them to follow up.
None of them would diagnose me, (symptoms were kind of non-classic, but not much else it could have been AND I was already agreeing with my Obe based on what I saw on the net), because they couldn't do a CT scan and couldn't see anything on ultrasound.
Finally I had surgery and sure enough it was appendicitis.
So this applies for lots of medical things, not just MS....
What a state we're in. Blessed are those of us who find a good doctor.
Sally
I just had a recent taste of that. Imagine my Obe was saying appendicitis for 3 months and sent me to many gastro doctors for them to follow up.
None of them would diagnose me, (symptoms were kind of non-classic, but not much else it could have been AND I was already agreeing with my Obe based on what I saw on the net), because they couldn't do a CT scan and couldn't see anything on ultrasound.
Finally I had surgery and sure enough it was appendicitis.
So this applies for lots of medical things, not just MS....
What a state we're in. Blessed are those of us who find a good doctor.
Sally
I think you are spot on there. The McDonald Criteria are clear that you start out with a good, deep look at what is happening to your patient and what a DETAILED neuro exam shows. This is often all that is needed as we have seen so often here. Those tools have always been available to doctors and many just ignore them, pretending that MS is an "MRI diagnosis." NOT!!
The other thing that smokes me is that the really lazy neuros are quite willing to say, "This is not MS." But they are unwilling to take the responsibility - which is rightfully theirs - to find out what it is.
Heck, sometimes I think that I could do as well as many of the specialists we have seen.
Quix
The other thing that smokes me is that the really lazy neuros are quite willing to say, "This is not MS." But they are unwilling to take the responsibility - which is rightfully theirs - to find out what it is.
Heck, sometimes I think that I could do as well as many of the specialists we have seen.
Quix
My grandmother has PPMS and has had it for 65 years. She just turned 89 and was dx'd in the 1940s, obviously without MRIs or other fancy techniques. She was in her mid-20s when diagnosed, using a cane by her mid-30s, in a wheelchair by her late 40s. I don't know how she was dx'd...tub of hot water? No idea, but she was diagnosed BEFORE becoming so disabled that she required ambulation assistance.
I wonder just how much some of these technical "advances" of today have interfered with people's accurate diagnoses as MDs focus too much on what they can't see (e.g., T2 spots) while ignoring what is right in front of their eyes: their patient and their patient's signs and symptoms. Ironically, Craig might have received the right diagnosis much sooner had this happened to him 50 years ago. I think some of the imaging and measuring and lesion counting has made neuros simply lazy.
Bio
I wonder just how much some of these technical "advances" of today have interfered with people's accurate diagnoses as MDs focus too much on what they can't see (e.g., T2 spots) while ignoring what is right in front of their eyes: their patient and their patient's signs and symptoms. Ironically, Craig might have received the right diagnosis much sooner had this happened to him 50 years ago. I think some of the imaging and measuring and lesion counting has made neuros simply lazy.
Bio
Why It is So Difficult to Diagnose PPMS?
PPMS is a very different disease from RRMS. Some in the field would like to see it classified as a separate disease altogether. There are several reasons for this.
1) PPMS, by definition, does not have the pattern of Relapses and Remissions. The picture is one of insiduously worsening symptoms. The progression does not have to be rapid. In fact, it often is not. The changes may be so subtle as to cause the doctor (if he is not doing thorugh, serial exams), to doubt what the patient is saying. A person with PPMS may have periods of stability, but never real improvement. Without the Relapsing Remitting pattern, there are many more neurologic diseases that must be considered.
2) There is less of the demyelinating/inflammatory process going on in many PPMSers. Their brain lesions may be much smaller (though not always). Because they have more direct "axonal degeneration" and less immune inflammation, they are more likely to have a negative LP. Up to 40% of people with PPMS have no O-Bands and the IgG Index is not elevated. O-Bands and the IgG Index are made up of antibodies. Both of these tests reflect the inflammation caused by out-of-control immune reactions.
3) They are quicker to develop the T1 "Black Holes." I think a lot of radiologists and neurologists miss these because they are so fixated on seeing bright T2 lesions. The volume of black holes correlates closely with atrophy. Atrophy occurs much earlier in PPMS. Atrophy should never be visible (without computerized calculation) in a person in their 40's or 50's. Yet, we have seen on this forum, and with Craig, that, when they do see atrophy, they dismiss it as "age-related." This is Hogwash!
4) PPMS is more likely to develop in the older person, in their 40's or 50's. We have already seen that too many neurologists have blinders on with regard to a person's age and whether they will consider MS as a diagnosis. PPMS can, though, occur at any age in either sex. About half the cases of PPMS are in men, as opposed to RRMS in which men make up less than 30%, especially under the age of 40.
5) This is personal opinion. I also think that some neurologists avoid diagnosing PPMS becasue they don't want to deal with a disease that is poorly treatable. This is lazy and cowardly.
6) Many people with PPMS have predominantly spinal cord involvement. This explains why the characteristic first disability in PPMS is a Spastic, Paraparesis (spastic weakness) of the legs. Too many neurologists stop looking when the brain MRI is negative or atypical. By not scanning the spine, many cases of PPMS will be missed.
By all accounts PPMS makes up 15% of all MS cases. Guys, this is 1 in 7!!! Neurologists need to thinking about PPMS all along! Granted, you need a year of steady progression to diagnose it, but this year can be seen either looking back on the history or watching the patient for a year or with a combinationation of both.
I was thinking that this might be a good Health Page. We don't often talk about PPMS, but I'm sure people wonder.
Quix
PPMS is a very different disease from RRMS. Some in the field would like to see it classified as a separate disease altogether. There are several reasons for this.
1) PPMS, by definition, does not have the pattern of Relapses and Remissions. The picture is one of insiduously worsening symptoms. The progression does not have to be rapid. In fact, it often is not. The changes may be so subtle as to cause the doctor (if he is not doing thorugh, serial exams), to doubt what the patient is saying. A person with PPMS may have periods of stability, but never real improvement. Without the Relapsing Remitting pattern, there are many more neurologic diseases that must be considered.
2) There is less of the demyelinating/inflammatory process going on in many PPMSers. Their brain lesions may be much smaller (though not always). Because they have more direct "axonal degeneration" and less immune inflammation, they are more likely to have a negative LP. Up to 40% of people with PPMS have no O-Bands and the IgG Index is not elevated. O-Bands and the IgG Index are made up of antibodies. Both of these tests reflect the inflammation caused by out-of-control immune reactions.
3) They are quicker to develop the T1 "Black Holes." I think a lot of radiologists and neurologists miss these because they are so fixated on seeing bright T2 lesions. The volume of black holes correlates closely with atrophy. Atrophy occurs much earlier in PPMS. Atrophy should never be visible (without computerized calculation) in a person in their 40's or 50's. Yet, we have seen on this forum, and with Craig, that, when they do see atrophy, they dismiss it as "age-related." This is Hogwash!
4) PPMS is more likely to develop in the older person, in their 40's or 50's. We have already seen that too many neurologists have blinders on with regard to a person's age and whether they will consider MS as a diagnosis. PPMS can, though, occur at any age in either sex. About half the cases of PPMS are in men, as opposed to RRMS in which men make up less than 30%, especially under the age of 40.
5) This is personal opinion. I also think that some neurologists avoid diagnosing PPMS becasue they don't want to deal with a disease that is poorly treatable. This is lazy and cowardly.
6) Many people with PPMS have predominantly spinal cord involvement. This explains why the characteristic first disability in PPMS is a Spastic, Paraparesis (spastic weakness) of the legs. Too many neurologists stop looking when the brain MRI is negative or atypical. By not scanning the spine, many cases of PPMS will be missed.
By all accounts PPMS makes up 15% of all MS cases. Guys, this is 1 in 7!!! Neurologists need to thinking about PPMS all along! Granted, you need a year of steady progression to diagnose it, but this year can be seen either looking back on the history or watching the patient for a year or with a combinationation of both.
I was thinking that this might be a good Health Page. We don't often talk about PPMS, but I'm sure people wonder.
Quix
Hearing this news has made my day. I could not be happier for you and Craig and for your family. Treatment was way overdue for Craig, and thank God this Dr knew what he was looking at and took the necessary action to order the meds.
Your unwavering persistance and strong belief that there would be that someone one day to help Craig speaks to your love for Craig, your strength as a woman, your courage as a wife and mother. I'm so very proud of you for moving forward, obtaining the extended knowledge needed to know MS, and for always being here for us too all the while during this journey.
I hope Craig feels all of our love, and I hope you do too.
((((hugs))))
Shelly
Your unwavering persistance and strong belief that there would be that someone one day to help Craig speaks to your love for Craig, your strength as a woman, your courage as a wife and mother. I'm so very proud of you for moving forward, obtaining the extended knowledge needed to know MS, and for always being here for us too all the while during this journey.
I hope Craig feels all of our love, and I hope you do too.
((((hugs))))
Shelly
I think it was so difficult to get a diagnosis because the neuros Craig went to hid behind the McDonald's criteria. PPMS is atypical MS. There are smaller lesions, brain atrophy is one of the first signs, and you usually have a normal LP. The people who get PPMS are usually over the age of 40, and many of them are males.
But despite this information about PPMS being readily available for anyone to read on the internet, the neuros want to ignore it. They repeatedly discounted his smaller lesions in which only four of them were greater than 3mm. And even in 2007 when Craig went to a MS neuro in South Jersey in which his office was literally wall to wall award plaques from the MS society, he totally disregarded Craig's tight thigh muscles, horrible leg weakness and balance problems, and never even looked at his MRI films.
Repeatedly, Mayo and Cleveland Clinic Mellen Center totally disregarded the fact that he could not lift his legs when lying flat, lost the ability to be active etc. In fact last summer, the Mellen Center told him that he definitely does not have MS, with the emphasis on NOT. Again, they hid under the shelter of the McDonald Criteria.
The fiasco at NIH was a result of a neuro who was convinced Craig had NPH and wanted him to have a LP and have a large amount of fluid drained to meet his requirements for his study. It was the neuro's last week at NIH and we were forced to sign a form saying that if Craig did not meet the requirement for the study, then there was no obligation for them to diagnose his problem.
When one doctor told him and wrote in a report that it is most likely MS, he also told Craig that he would NEVER get a diagnosis at NIH. He said all they do is go by criteria and the policy is not to deviate from it. To save face, the neuro who was in charge of the study decided to call Craig a mentally unstable man who could not move his legs because of his psychiatric illness.
NYU is not far from our home state. Amtrak runs many daily trains to the city and it is a three hour drive door to door. In our small state, there are neuros and physical therapists on a "MS board" who help make policies for MS. Well, in speaking to them and trying to get my husband care, I found that many board members do not even know what PPMS is. I even took Craig to a state university PT clinic in which neurologic PT instructors told me that I must be wrong and Craig can't have MS....they don't know about PPMS either.
So you have ignorance of the condition, and arrogance on the part of many neuros, even in prestigious medical centers, to strictly adhere to criteria and not use their medical knowledge and assessment tools.
We will gladly go to NYU for treatment since, believe me, we won't get knowledgeable physicians here in our state. And in going to NYU after being at CC and Mayo and NIH, NYU makes the other centers look like preschools. NYU is not afraid to step "out of the box".
Thanks for your comments!!
Elaine
Elaine
But despite this information about PPMS being readily available for anyone to read on the internet, the neuros want to ignore it. They repeatedly discounted his smaller lesions in which only four of them were greater than 3mm. And even in 2007 when Craig went to a MS neuro in South Jersey in which his office was literally wall to wall award plaques from the MS society, he totally disregarded Craig's tight thigh muscles, horrible leg weakness and balance problems, and never even looked at his MRI films.
Repeatedly, Mayo and Cleveland Clinic Mellen Center totally disregarded the fact that he could not lift his legs when lying flat, lost the ability to be active etc. In fact last summer, the Mellen Center told him that he definitely does not have MS, with the emphasis on NOT. Again, they hid under the shelter of the McDonald Criteria.
The fiasco at NIH was a result of a neuro who was convinced Craig had NPH and wanted him to have a LP and have a large amount of fluid drained to meet his requirements for his study. It was the neuro's last week at NIH and we were forced to sign a form saying that if Craig did not meet the requirement for the study, then there was no obligation for them to diagnose his problem.
When one doctor told him and wrote in a report that it is most likely MS, he also told Craig that he would NEVER get a diagnosis at NIH. He said all they do is go by criteria and the policy is not to deviate from it. To save face, the neuro who was in charge of the study decided to call Craig a mentally unstable man who could not move his legs because of his psychiatric illness.
NYU is not far from our home state. Amtrak runs many daily trains to the city and it is a three hour drive door to door. In our small state, there are neuros and physical therapists on a "MS board" who help make policies for MS. Well, in speaking to them and trying to get my husband care, I found that many board members do not even know what PPMS is. I even took Craig to a state university PT clinic in which neurologic PT instructors told me that I must be wrong and Craig can't have MS....they don't know about PPMS either.
So you have ignorance of the condition, and arrogance on the part of many neuros, even in prestigious medical centers, to strictly adhere to criteria and not use their medical knowledge and assessment tools.
We will gladly go to NYU for treatment since, believe me, we won't get knowledgeable physicians here in our state. And in going to NYU after being at CC and Mayo and NIH, NYU makes the other centers look like preschools. NYU is not afraid to step "out of the box".
Thanks for your comments!!
Elaine
Elaine
Wow, this is amazing to read. I joined the forum later in your journey, but from what I've read, you and your husband have been through a remarkable couple of years. I am very glad you had eachother through this.
Reading that the NIH treated Craig as you describes is awful. I've read mixed reviews of other clinics and centers, but always held NIH in high regards, thinking that any publication or study through them was top notch. It is dreadful to read that your experience there was mostly detrimental. Again, thankfully you were there to support your husband, as even the most amazing person can suffer a blow to hope and ego when treated so poorly.
If you are willing and able to further comment on the past few years, I was wondering if you would expand on your perspective of why it was so difficult to get a diagnosis which will (hopefully) allow for proper treatment. It may be impossible to answer, but do you think that the waiting was largely inevitable? Also, if Craig's diagnosis was from a non-local doctor, how will that influence follow up and care? Again, I don't mean to be out of line, and am only looking to learn from whatever you are willing to share of your experience.
Happy belated anniversary, and all of my best hopes and prayers for successful treatment and management of Craig's condition.
Reading that the NIH treated Craig as you describes is awful. I've read mixed reviews of other clinics and centers, but always held NIH in high regards, thinking that any publication or study through them was top notch. It is dreadful to read that your experience there was mostly detrimental. Again, thankfully you were there to support your husband, as even the most amazing person can suffer a blow to hope and ego when treated so poorly.
If you are willing and able to further comment on the past few years, I was wondering if you would expand on your perspective of why it was so difficult to get a diagnosis which will (hopefully) allow for proper treatment. It may be impossible to answer, but do you think that the waiting was largely inevitable? Also, if Craig's diagnosis was from a non-local doctor, how will that influence follow up and care? Again, I don't mean to be out of line, and am only looking to learn from whatever you are willing to share of your experience.
Happy belated anniversary, and all of my best hopes and prayers for successful treatment and management of Craig's condition.
You know how some people's stories reach out and touch you. Craig's journey for a diagnosis has been that for me. In my opinion the medical communities treatment of you both has been criminal. I am so happy that you have found someone who listened to you and looked at the facts and looked at Craig. I am so hopeful that the treatment will begin to help Craig and he will see an improvement of his symptoms or at least stop the deterioration. I will be eager to hear how he fares over the next couiple of months.
Yvette
Yvette
This is one of the most amazing things I've ever read here. I've been wondering and wondering about Craig since coming to this forum and reading his story. Wow. It's about time someone paid real attention and took steps to help. This is just incredible. It's weird to feel sort of celebratory about an MS diagnosis, but I think you'll understand what I mean when I say, congratulations. You are both in my thoughts as you enter this new chapter.
Bio
Bio
Wow! I missed all the excitement when I was off chasing ghosts! Thank the Lord you finally have answers. It's about stinkin' time! Craig is so lucky to have such a fighter on his side...and to be such a fighter himself. I admire the heck out of the two of you. I'm sitting here crying like a baby, I'm so happy that you know what you're fighting
Love and hugs, Penn
Love and hugs, Penn
I am thrilled you have a diagnosis! I know how happy you all must be! I am glad that they will start you on meds now. Lynette
Thank the Lord. Now, they can finally start treating the monster and help Craig get on the right track. Of course we all know there is no cure but just to know what is wrong with you takes such a load off the whole family. If your like me the first thing you want to do is throw the diagnosis in the faces of all those doctors that told him he was lazy or faking it. That's what I wanted to do but of course revenge isn't the answer. Every bit of your being now needs to be focused on MS. Now that we know let's help each other get through all of this. God Bless you both and you know what I'll be doing.
I'll be praying,
Carol
I'll be praying,
Carol
I'm so glad that Craig has finally been diagnosed, and can begin receiving treatment.
This whole thing just makes me furious - how many people are walking around with symptoms like Craig, but remain undiagnosed because of ignorance?
This whole thing just makes me furious - how many people are walking around with symptoms like Craig, but remain undiagnosed because of ignorance?
Don't know if you have seen this, but this study shows some preliminary positive effects in PPMS with periodic steroid infusions.
http://www.acceleratedcure.org:8080/node/3326
sho
http://www.acceleratedcure.org:8080/node/3326
sho
I'm sorry our call was interrupted~I drove past one of Michigan's little lakes and our call was dropped. Can you hear me now?
I am filled with all kinds of mixed emotions at your news. Of course, it's a relief of sorts to FINALLY get the big D. The Diagnosis. MS. We can look the MonSter int he face at last. And Primary Progressive is what we've suspected for a long while now. I'm sorry about that, but it does make the most sense for Craig. So, there's that sorrow, too.
And just plain sadness about the whole journey you guys have had and how long it's taken, and what you've gone through with your families and what the kids have had to endure.
I've long thought that even when Craig got his diagnosis, eventually, it would be such a disappointment, because with PPMS the treatment options are so dismal. But I am SO hopeful! I am quite eager to know more about what they have found out in their trials with Copaxone and dudes with PPMS. Dude! I wasn't prepared to hear that! Excellent! Very promising and hopeful! Eee Haaw!
And, I know that it will take time for all this to sink in with Craig. I can't imagine, with all he's been through, with all you've been through, how we can expect him to just sail through all this without a glitch. He needs time. You need time. The kids need time. Your brother-in-law needs to have an anvil dropped on his head. I'll help.
Happy Anniversary. Tell Craig he's loved -- even though I know he knows that already. Tell him WE love him.
Love you, too.
Zilla*
I am filled with all kinds of mixed emotions at your news. Of course, it's a relief of sorts to FINALLY get the big D. The Diagnosis. MS. We can look the MonSter int he face at last. And Primary Progressive is what we've suspected for a long while now. I'm sorry about that, but it does make the most sense for Craig. So, there's that sorrow, too.
And just plain sadness about the whole journey you guys have had and how long it's taken, and what you've gone through with your families and what the kids have had to endure.
I've long thought that even when Craig got his diagnosis, eventually, it would be such a disappointment, because with PPMS the treatment options are so dismal. But I am SO hopeful! I am quite eager to know more about what they have found out in their trials with Copaxone and dudes with PPMS. Dude! I wasn't prepared to hear that! Excellent! Very promising and hopeful! Eee Haaw!
And, I know that it will take time for all this to sink in with Craig. I can't imagine, with all he's been through, with all you've been through, how we can expect him to just sail through all this without a glitch. He needs time. You need time. The kids need time. Your brother-in-law needs to have an anvil dropped on his head. I'll help.
Happy Anniversary. Tell Craig he's loved -- even though I know he knows that already. Tell him WE love him.
Love you, too.
Zilla*
All I want to say is that I admire the both you and Craig greatly for not giving up. Thanks for setting such a wonderful example for us all.
Happy Anniversary!!!!!
Many prayers will be going up for you from me in the coming days, may you have peace in your hearts as you continue on this journey.
(((((hugs))))))
~Sunnytoday~
Happy Anniversary!!!!!
Many prayers will be going up for you from me in the coming days, may you have peace in your hearts as you continue on this journey.
(((((hugs))))))
~Sunnytoday~
Thank goodness. Now your efforts can be placed elsewhere, TREATMENT, rather than searching for answers.
Nothing but good wishes to you two, and keep us posted on Craig's progress.
Hugs to you both,
Wanna :o)
Nothing but good wishes to you two, and keep us posted on Craig's progress.
Hugs to you both,
Wanna :o)
First, Happy Anniversary!! To have a love like you and Craig is a gift from God. What we all wouldn't give to have someone love us as much as you love Craig, and to stand up and fight for us when we need it.
I had to wait awhile to respond to your post cause I was crying so hard I couldn't see the screen!!! God bless you, both. Now you can move forward and start the treatment Craig has needed for way too long. I don't post much, but you, Craig and your family have always been in my prayers, everyday.
My heart is with you both.
Hugs
doni
I had to wait awhile to respond to your post cause I was crying so hard I couldn't see the screen!!! God bless you, both. Now you can move forward and start the treatment Craig has needed for way too long. I don't post much, but you, Craig and your family have always been in my prayers, everyday.
My heart is with you both.
Hugs
doni
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