Aa
Sad appointment with Dr.M
Well, last Friday was the follow-up appt with Dr. M for Craig. At the first appt, Dr. M looked at Craig's brain atrophy and 20 lesions. He said only four of them are greater than 3mm and they could count towards a MS diagnosis, and if a lesion shows up on the spine, it would be a "slam dunk" for MS.
Well,on Friday, he told Craig that there were no lesions on the spine. He then proceeded to tell Craig that he doesn't have MS. He just has an abnormal brain MRI. He follows the McDonald criteria very strictly and said that Craig will need nine T2 lesions. (so five more or the ones he does have that are small need to grow).
What he proceeded to do after saying that is what hurt Craig. He proceeded to not acknowledge Craig's spasticity in both of his legs (documented by the physiatrist and current physical therapist). He said that Craig is intentionally tightening his muscles, despite the fact that the legs stayed tight after M shook them to loosen them.
He dismissed the frozen soleus muscle, also documented.
Craig has not been able to lift his legs when sitting for a year now. He asked Craig to lift his leg (only a few inches was all he could do) and then M pressed down on it. His leg fell down immediately. M said he wasn't trying hard enough to hold up his leg. He dismissed the weakness.
He doesn't think Craig needs Neurontin or Zanaflex because he HAS NO SYMPTOMS, but he said he wouldn't get into a disagreement with the physiatrist. Good.
So Craig went from almost a slam dunk to having no MS. Craig is to return in October for another brain MRI. he asked M if he gets a diagnosis with eight lesions. M said he'll cross that bridge when he gets to it.
He is not planning to come back.,
Craig would be devastated but God opened a window before he closed the M door.
You see, Craig's new PCP had quickly arranged for Craig to go to Univ of MD for an appt with a MS neuro the day before Craig left for Oregon. He feels bad that Craig is not getting treated or diagnosed. We scrambled to get reports ready and braced ourselves for rejection.
However, Craig was believed!!!! The Univ of Maryland neuro spent one hour reading the MRI films and one hour with us. He said the brain MRI is "classic" for MS, with the location of the lesions and the condition of the brain (atrophy ). He was very nice.
This neuro is the only one that was interested in Craig's hypo-pituitary disease and low testosterone and spine osteoporosis. he believes they are related to the MS. He asked Craig what his lifestyle is as far as how much he was outside in his youth etc.
Craig will be having a brain MRI next month at Univ of MD and then the doctor will assess the situation as far as the need for DMD's. Right now he wants Craig to stay on the 5,000 IU vitamin D he has been on since last August.
So we are sad about Dr. M. but happy the PCP helped get an appt at Univ of MD. I am hoping the physical therapy will keep Craig mobile for now.
Thanks for your concern and support everyone. This is just another example of how two respected neurologists can interpret something so totally differently. For those in limbo,,keep trying.
Elaine
Well,on Friday, he told Craig that there were no lesions on the spine. He then proceeded to tell Craig that he doesn't have MS. He just has an abnormal brain MRI. He follows the McDonald criteria very strictly and said that Craig will need nine T2 lesions. (so five more or the ones he does have that are small need to grow).
What he proceeded to do after saying that is what hurt Craig. He proceeded to not acknowledge Craig's spasticity in both of his legs (documented by the physiatrist and current physical therapist). He said that Craig is intentionally tightening his muscles, despite the fact that the legs stayed tight after M shook them to loosen them.
He dismissed the frozen soleus muscle, also documented.
Craig has not been able to lift his legs when sitting for a year now. He asked Craig to lift his leg (only a few inches was all he could do) and then M pressed down on it. His leg fell down immediately. M said he wasn't trying hard enough to hold up his leg. He dismissed the weakness.
He doesn't think Craig needs Neurontin or Zanaflex because he HAS NO SYMPTOMS, but he said he wouldn't get into a disagreement with the physiatrist. Good.
So Craig went from almost a slam dunk to having no MS. Craig is to return in October for another brain MRI. he asked M if he gets a diagnosis with eight lesions. M said he'll cross that bridge when he gets to it.
He is not planning to come back.,
Craig would be devastated but God opened a window before he closed the M door.
You see, Craig's new PCP had quickly arranged for Craig to go to Univ of MD for an appt with a MS neuro the day before Craig left for Oregon. He feels bad that Craig is not getting treated or diagnosed. We scrambled to get reports ready and braced ourselves for rejection.
However, Craig was believed!!!! The Univ of Maryland neuro spent one hour reading the MRI films and one hour with us. He said the brain MRI is "classic" for MS, with the location of the lesions and the condition of the brain (atrophy ). He was very nice.
This neuro is the only one that was interested in Craig's hypo-pituitary disease and low testosterone and spine osteoporosis. he believes they are related to the MS. He asked Craig what his lifestyle is as far as how much he was outside in his youth etc.
Craig will be having a brain MRI next month at Univ of MD and then the doctor will assess the situation as far as the need for DMD's. Right now he wants Craig to stay on the 5,000 IU vitamin D he has been on since last August.
So we are sad about Dr. M. but happy the PCP helped get an appt at Univ of MD. I am hoping the physical therapy will keep Craig mobile for now.
Thanks for your concern and support everyone. This is just another example of how two respected neurologists can interpret something so totally differently. For those in limbo,,keep trying.
Elaine
Elaine and Craig
My heart is so sad for all that you are going through. I will pray that someone will listen and treatment will come.
Rebeccah
My heart is so sad for all that you are going through. I will pray that someone will listen and treatment will come.
Rebeccah
The first neuro I went to, back in October of 2004, told my husband and me that I didn't have MS and he was sure that I would keep getting worse and the pain would also keep getting worse. We where like how do you know I'll get worse if you don't know what I have. He said that I did have severe demyelination but because I only had 2 lesions and several non specific lesions that it couldn't be MS but he was sure whatever it was it was bad. (hmmm)
What a dud! I don't know how you could call yourself a specialist and tell someone something like that. I'll bet that right here in our own little forum family there are many stories just like mine and Craigs.
It took a long time for me to finally get a diagnosis so hang in there. I think that Craig's neuro will help him because he believes him. That's what it all boils down too. If they don't believe your telling the truth, as Dr. M did, then you should go ahead and find another neuro. I also think that Dr M was very rude. One of the things that I hate worse than anything in this world is for someone to call me a liar.
I'll be praying,
Carol
What a dud! I don't know how you could call yourself a specialist and tell someone something like that. I'll bet that right here in our own little forum family there are many stories just like mine and Craigs.
It took a long time for me to finally get a diagnosis so hang in there. I think that Craig's neuro will help him because he believes him. That's what it all boils down too. If they don't believe your telling the truth, as Dr. M did, then you should go ahead and find another neuro. I also think that Dr M was very rude. One of the things that I hate worse than anything in this world is for someone to call me a liar.
I'll be praying,
Carol
No one wants to hear MS. But, a dx is such a relief, even when it is a huge blow. You have been unbelievable in your search for an answer. I hope that Craig can get some relief now, and both of you can have some peace of mind, even though the road is not one any on the forum would have chose.
I'm so sorry about this past trip, since I had such high hopes for it. Never thought Dr. M. would turn out to be so rigid. I agree, there's no point in future trips of 3000 miles each way just to undergo more of the same.
Dr. M's attitude about the hip flexors is very puzzling. I'm sure Craig's are much worse than mine. At Hopkins I was told to raise each leg and no problems. When they pushed down on them I pushed back hard, as hard as I had with other muscles, but they kept saying to do it harder. I was doing the best I could and had no idea they were weak, which is what they concluded. So mine is much less than Craig's but wasn't dismissed.
As to the spasticity, thanks to Quix's lengthy explanation some time ago, we now know that there are objective measures of this. I don't think faking can come into the equation even if we try. Maybe that's why Dr. M backed off this one somewhat. The physiatrist and PT deal with spasticity all day every day, after all.
So that leads to your visit with Dr. R on last Weds. He puzzles me somewhat, for sure. If there are DMDs out there for Craig I'd want to see him start as soon as possible. I'm glad he is looking at a bigger picture over time than the typical MS symptoms alone.
I do hope he works out for Craig. If not, someone at Hopkins is definitely the one to try next. I know you've been there, but am pretty sure it was just for an MRI, not a consulatation, no? Several of my other doctors are Hopkins-trained, and I could try to find out which of the MS neuros is the most out of the box. I have no idea at this point, and just went there more or less blind myself, taking the first appt. I could get. Hopkins is a huge place and I don't have any real contacts in neurology, but I can try.
ess
Dr. M's attitude about the hip flexors is very puzzling. I'm sure Craig's are much worse than mine. At Hopkins I was told to raise each leg and no problems. When they pushed down on them I pushed back hard, as hard as I had with other muscles, but they kept saying to do it harder. I was doing the best I could and had no idea they were weak, which is what they concluded. So mine is much less than Craig's but wasn't dismissed.
As to the spasticity, thanks to Quix's lengthy explanation some time ago, we now know that there are objective measures of this. I don't think faking can come into the equation even if we try. Maybe that's why Dr. M backed off this one somewhat. The physiatrist and PT deal with spasticity all day every day, after all.
So that leads to your visit with Dr. R on last Weds. He puzzles me somewhat, for sure. If there are DMDs out there for Craig I'd want to see him start as soon as possible. I'm glad he is looking at a bigger picture over time than the typical MS symptoms alone.
I do hope he works out for Craig. If not, someone at Hopkins is definitely the one to try next. I know you've been there, but am pretty sure it was just for an MRI, not a consulatation, no? Several of my other doctors are Hopkins-trained, and I could try to find out which of the MS neuros is the most out of the box. I have no idea at this point, and just went there more or less blind myself, taking the first appt. I could get. Hopkins is a huge place and I don't have any real contacts in neurology, but I can try.
ess
I am so sorry to hear that things with Dr. M didn't turn out the way you had hoped but sometimes it's kizmet isn't it? I believe that from what I read that you and others have held much esteem for the wonderful Dr. M and it's great to have something to believe in but at the same time...it seems that your pcp is in line for the award of excellence here in going ahead and making an appointment with another neurologist regardless of the wonderful Dr. M and the success he has had is astounding! I am so happy for the both of you that while a door was closed a window has opened and it looks like he finally is going to get the care he deserves!
Best of Luck to both of you and we will be anxious to hear how the next appointment goes with the doctor that counts!
Lots of Hugs,
Rena
Best of Luck to both of you and we will be anxious to hear how the next appointment goes with the doctor that counts!
Lots of Hugs,
Rena
CRAIG AND YOURSELF HAVE BEEN ON THE ROLLERCOASTER FROM HECK WITH SEVERAL DIFFERENT DRS.
ELAINE THE MOST IMPORTANT THING IS FINDING THE RIGHT DR. I THINK NEURO'S ARE LIKE A PAIRS OF SHOES,FINDING THE RIGHT FIT.
WHEN THERES MULTIPLE THINGS OCCURRING,DRS WON'T COMMIT TO A DISORDER.I THINK CRAIG HAS FOUND A DR. THAT HAS THE RIGHT FIT.
I DIDN'T KNOW THAT SPACTICITY COULD BE FAKED.
ELAINE I'M ON BACLOFEN,ZANAFLEX,VALIUM AND ATIVAN FOR THE MUSCLE SPASMS.HECK WHEN I'M ON MY MEDS A DR. CAN TWIST MY MUSCLES WITH OUT TIGHTNESS,IF I'M OFF MY MEDS THEN THATS A DIFFERENT STORY.
I TAKE NEURONTIN FOR NERVE PAIN.
I'M SORRY ABOUT CRAIGS APPOINTMENT WITH DR. M.
THEY SAY THINGS HAPPEN FOR A REASON.LET CRAIG KNOW THAT I THINK ABOUT HIM OFTEN AND HE'S IN MY PRAYERS DAILY.I HOPE HE IS GETTING RELEIF WITH THE ZANAFLEX AND THE NEURONTIN.
T-LYNN
ELAINE THE MOST IMPORTANT THING IS FINDING THE RIGHT DR. I THINK NEURO'S ARE LIKE A PAIRS OF SHOES,FINDING THE RIGHT FIT.
WHEN THERES MULTIPLE THINGS OCCURRING,DRS WON'T COMMIT TO A DISORDER.I THINK CRAIG HAS FOUND A DR. THAT HAS THE RIGHT FIT.
I DIDN'T KNOW THAT SPACTICITY COULD BE FAKED.
ELAINE I'M ON BACLOFEN,ZANAFLEX,VALIUM AND ATIVAN FOR THE MUSCLE SPASMS.HECK WHEN I'M ON MY MEDS A DR. CAN TWIST MY MUSCLES WITH OUT TIGHTNESS,IF I'M OFF MY MEDS THEN THATS A DIFFERENT STORY.
I TAKE NEURONTIN FOR NERVE PAIN.
I'M SORRY ABOUT CRAIGS APPOINTMENT WITH DR. M.
THEY SAY THINGS HAPPEN FOR A REASON.LET CRAIG KNOW THAT I THINK ABOUT HIM OFTEN AND HE'S IN MY PRAYERS DAILY.I HOPE HE IS GETTING RELEIF WITH THE ZANAFLEX AND THE NEURONTIN.
T-LYNN
Sometimes I think that regardless of the situation or evidence if we catch a neuro on a bad day we will not get any answers because they will act the way this neuro treated Craig.
My first neuro treated me this way and I left crying my eyes out. I remember his demeanor as he walked into the room, his body language spoke volumes as to what the next few minutes would be like. To think that Craig is "faking" his weakness or spasticity is absolutely absurd.
I am glad that God has opened that window for you both and that hopefully you will be entering a path that will lead to some treatment that will help him and not just continue to tear him down.
You and your family are in my prayers!!
Kristin
My first neuro treated me this way and I left crying my eyes out. I remember his demeanor as he walked into the room, his body language spoke volumes as to what the next few minutes would be like. To think that Craig is "faking" his weakness or spasticity is absolutely absurd.
I am glad that God has opened that window for you both and that hopefully you will be entering a path that will lead to some treatment that will help him and not just continue to tear him down.
You and your family are in my prayers!!
Kristin
I'm so sorry that Dr. M behaved the way he did. I wonder how all these docs would feel if THEY were on the other side of the white coat? Having symptoms and being dismissed... it makes me so mad! It kills me that some of these guys are so hung up on such strict criteria, when they know that individuals can be so different.
But thank God for the doc at the Univ. of MD!!! You guys must be so relieved to finally have someone actually listen and care. I am so happy for you, although I wish it would turn out to be something besides MS...:) At least if it is, Craig will finally get the treatment he needs. And it's closer to home, too....
You guys take care - you remain in my thoughts and prayers...
Bye for now,
Rita
But thank God for the doc at the Univ. of MD!!! You guys must be so relieved to finally have someone actually listen and care. I am so happy for you, although I wish it would turn out to be something besides MS...:) At least if it is, Craig will finally get the treatment he needs. And it's closer to home, too....
You guys take care - you remain in my thoughts and prayers...
Bye for now,
Rita
I just find it so hard to believe that you are now hard to believe....
Why this about-face, now that Craig does not so easily fit the criteria, I wonder? I understand that Morrow has boards and peers to answer to that most doctors do not, just because of the ino I get from you and Quix. But this attitude from him I find appalling. From a near-slam to zilch. See you in October. Awful.
How can we hold these doctors accountable for these inexcusable actions, I wonder?
I am excited about the new doctor. Terrific! What a brilliant thinker! What's his phone number? As you know, I have hormone and Vitamin D deficiencies... Very intriguing indeed! Stick with him!
I am so sorry you are put through this constant roller coaster ride with your family trying to keep their arms and legs in the cars until the ride has come to a complete stop. Seat belts strapped.
Take it easy and keep on keepin' on as you have been doing so very long. You're shining examples.
Feel strong,
Zilla*
Why this about-face, now that Craig does not so easily fit the criteria, I wonder? I understand that Morrow has boards and peers to answer to that most doctors do not, just because of the ino I get from you and Quix. But this attitude from him I find appalling. From a near-slam to zilch. See you in October. Awful.
How can we hold these doctors accountable for these inexcusable actions, I wonder?
I am excited about the new doctor. Terrific! What a brilliant thinker! What's his phone number? As you know, I have hormone and Vitamin D deficiencies... Very intriguing indeed! Stick with him!
I am so sorry you are put through this constant roller coaster ride with your family trying to keep their arms and legs in the cars until the ride has come to a complete stop. Seat belts strapped.
Take it easy and keep on keepin' on as you have been doing so very long. You're shining examples.
Feel strong,
Zilla*
Wow. Your story about that first neuro is just terrible. "Just an abnormal brain MRI"? I wonder what he'd do if he had an MRI like that. Or his wife. Or child. Twenty lesions, and that's not enough? Brain atrophy, and that's not enough? Does this person have no lateral thinking skills whatsoever?
Thank God for the doc at U MD. I almost feel like you should file a complaint against Dr. M for malpractice. The attitude alone is malpractice, not even getting into the literal bad practice of medicine in which he's engaging.
Bio
Thank God for the doc at U MD. I almost feel like you should file a complaint against Dr. M for malpractice. The attitude alone is malpractice, not even getting into the literal bad practice of medicine in which he's engaging.
Bio
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