Aa
upcoming neuro talks
I am going to two different talks this week - sponsored by the pharmas and involving neurologists who specialize in MS. Do you have any questions you might want me to ask if I get the opportunity? Just let me know and I'll do my best for you.........
Hi, Lulu!
Rich & I went to the IN Dunes for 3 & 1/2 days. (It's just 20 minutes away, but to me, it feels like another world, to stay in the campground, away from everything.)
I am in awe of all of the questions you asked, and all of the answers the Neurologist provided.
I am going to discuss gastroparesis with my G.I. Doc on the 31st.
Lulu, thank you so very much, for attending the talk, and asking all of the questions you asked, and getting so many great answers.
And thank you for reminding Kelly & I that no question is too embarrassing to ask with MS.
I am hoping, if I can get answers to what has happended to me, with the loss of urge to defecate, that it will help others prevent it from happening.
I feel, if my doctors had taken it more seriously, when it first began, it may not have become this serious.
At one time, I felt too embarrassed to discuss everything, but I realize, my experience may very well help someone else.
Again, thank you so much, Lulu.
(((HUGS)))
Sheila
Rich & I went to the IN Dunes for 3 & 1/2 days. (It's just 20 minutes away, but to me, it feels like another world, to stay in the campground, away from everything.)
I am in awe of all of the questions you asked, and all of the answers the Neurologist provided.
I am going to discuss gastroparesis with my G.I. Doc on the 31st.
Lulu, thank you so very much, for attending the talk, and asking all of the questions you asked, and getting so many great answers.
And thank you for reminding Kelly & I that no question is too embarrassing to ask with MS.
I am hoping, if I can get answers to what has happended to me, with the loss of urge to defecate, that it will help others prevent it from happening.
I feel, if my doctors had taken it more seriously, when it first began, it may not have become this serious.
At one time, I felt too embarrassed to discuss everything, but I realize, my experience may very well help someone else.
Again, thank you so much, Lulu.
(((HUGS)))
Sheila
COMMUNITY LEADER
Once again you've done a wonderful job with your notes, how you do it i'm not sure but you always do great! :o)
Thank you for asking questions on our behalf, and yes bugger it but I did know there isn't really anything, a girl can hope, right? I suppose i could always start up an act, i'm pretty good at throwing knives, though I dont have a good aim, any takers? RFOL
Thank you!
Thank you for asking questions on our behalf, and yes bugger it but I did know there isn't really anything, a girl can hope, right? I suppose i could always start up an act, i'm pretty good at throwing knives, though I dont have a good aim, any takers? RFOL
Thank you!
I’m a bit slow in filing my report from the talk sponsored by Copaxone and Shared Solutions, but here it is – the Neuro who spoke was great. Michael Mazowiecki is a general neurologist, but sees about 200 MS patients at the Neruological Institute of Western Pennsylvania.. He has quite the sense of humor and I get the impression he is a good clinician.
He was in no hurry to get through the Q&A and I was able to ask a long list of things. Here are your questions and answers in no particular order –
JHB –obstructive sleep apnea does NOT cause lesions. He was adamant about that. The connection between OSA and memory is obvious- when we are tired, our mental functioning decreases. Well rested and the memory can get better. I’m sorry but I overlooked the neuropsych testing question and will try to catch that the next time around.
Jenphilly- I asked and his immediate response was the diet link is Poppycock. He reconfirmed for me that diet has been looked at repeatedly and there is no proven link between MS and diet. He also reemphasized what we talk about here often- we all benefit from eating healthy. The more conscious we are of what we ingest, the better we will feel. He did make the point that even though we have MS, we can still have other diseases such as Celiac or Crohn’s that makes diet a key symptom to feeling poorly/better. He said we should eat what we want, within moderation and common sense.
Sheila and Kelly, you should know by now that no question is too embarrassing for me to ask. Timing, though, is everything and I waited to ask yours until everyone had finished eating. LOL
We discussed the broader issues of both bladder and bowel function, first. He emphasizded the importance of being seen by a urologist to evaluate bladder and a GI doc for the bowel problems. He said that talking to your neurologist first is important, and let them do the referral for the appropriate testing . As he said, neuros don’t actually do the tests but they know which ones are best to have done.
For both the pelvic floor and the internal anal sphincter muscle, he said they are using botox injections. Now that I’m writing this I wish I had asked more about the anal botox, with the bladder Botox can make it necessary to void using a straight catheter. I wonder how the bowel is emptied if the muscles are ‘paralyzed’ wth the botox? I’ll keep working on getting a better answer for you, yorkie! He did say that for the bowel, the key thing is diet and it is not unusual to see gastroparesis in MS patients.
He discussed the use of neurostims implanted to help with the bladder if other treatments don’t work.
S-mum, he said there is still little they have to work for tremors. He said that botox is a wonderful drug but is showing that it isn’t that great for tremors but it is pretty good for headaches, spasticity and extreme spasms. He said for now there is little to treat tremors, but I think you already know that.
I did ask the more general question as to which is more important in diagnosing and tracking MS – the MRI or the clinical exam? He talked quite a bit about having patients with MS who have a negative LP, or who have a negative MRI, but still have all the clinical signs of MS. More than once he used the word ‘totality,’ and explained that it is most important to look at everything for the patient and see what it adds up to. He said that it is known for each new attack there is usually 4-10 new lesions
Some other take-aways from Dr. Mazowiecki -
Someone asked about the relationship of Epilepsy and MS. He talked that it is not uncommon for people with MS to have seizures, this being because the brain is mis-wired and mis-firing with MS.
Exercise – do something you enjoy and you are more likely to stick with it. Don’t just do something because it is supposed to be good for you.
It’s not rare for RA patients on monoclonal antibody treatments (Humira, Enbrel) developing MS from their drugs- as with everything else, patients have to weigh the risk vs benefit.
He was asked what type of appointments and interaction he has with his patients - he said “ Medicare, Obamacare, Yourcare, Icare – it doesn’t matter what program we are under,” the system is broke and it doesn’t allow doctors to spend adequate time with their patients and there has to be a way to get the most out of our appointment times. He also touched on that it is virtually impossible for new doctors to practice medicine the old ways – they can’t afford to set up private practices because of all the costs associated with oversight programs and have to find partners and work for other corporations. It is always interesting to hear the different perspectives from these doctors.
I hope you learn something from this- I know I did. And for the record, I skipped the second talk that evening.
be well, Lu
He was in no hurry to get through the Q&A and I was able to ask a long list of things. Here are your questions and answers in no particular order –
JHB –obstructive sleep apnea does NOT cause lesions. He was adamant about that. The connection between OSA and memory is obvious- when we are tired, our mental functioning decreases. Well rested and the memory can get better. I’m sorry but I overlooked the neuropsych testing question and will try to catch that the next time around.
Jenphilly- I asked and his immediate response was the diet link is Poppycock. He reconfirmed for me that diet has been looked at repeatedly and there is no proven link between MS and diet. He also reemphasized what we talk about here often- we all benefit from eating healthy. The more conscious we are of what we ingest, the better we will feel. He did make the point that even though we have MS, we can still have other diseases such as Celiac or Crohn’s that makes diet a key symptom to feeling poorly/better. He said we should eat what we want, within moderation and common sense.
Sheila and Kelly, you should know by now that no question is too embarrassing for me to ask. Timing, though, is everything and I waited to ask yours until everyone had finished eating. LOL
We discussed the broader issues of both bladder and bowel function, first. He emphasizded the importance of being seen by a urologist to evaluate bladder and a GI doc for the bowel problems. He said that talking to your neurologist first is important, and let them do the referral for the appropriate testing . As he said, neuros don’t actually do the tests but they know which ones are best to have done.
For both the pelvic floor and the internal anal sphincter muscle, he said they are using botox injections. Now that I’m writing this I wish I had asked more about the anal botox, with the bladder Botox can make it necessary to void using a straight catheter. I wonder how the bowel is emptied if the muscles are ‘paralyzed’ wth the botox? I’ll keep working on getting a better answer for you, yorkie! He did say that for the bowel, the key thing is diet and it is not unusual to see gastroparesis in MS patients.
He discussed the use of neurostims implanted to help with the bladder if other treatments don’t work.
S-mum, he said there is still little they have to work for tremors. He said that botox is a wonderful drug but is showing that it isn’t that great for tremors but it is pretty good for headaches, spasticity and extreme spasms. He said for now there is little to treat tremors, but I think you already know that.
I did ask the more general question as to which is more important in diagnosing and tracking MS – the MRI or the clinical exam? He talked quite a bit about having patients with MS who have a negative LP, or who have a negative MRI, but still have all the clinical signs of MS. More than once he used the word ‘totality,’ and explained that it is most important to look at everything for the patient and see what it adds up to. He said that it is known for each new attack there is usually 4-10 new lesions
Some other take-aways from Dr. Mazowiecki -
Someone asked about the relationship of Epilepsy and MS. He talked that it is not uncommon for people with MS to have seizures, this being because the brain is mis-wired and mis-firing with MS.
Exercise – do something you enjoy and you are more likely to stick with it. Don’t just do something because it is supposed to be good for you.
It’s not rare for RA patients on monoclonal antibody treatments (Humira, Enbrel) developing MS from their drugs- as with everything else, patients have to weigh the risk vs benefit.
He was asked what type of appointments and interaction he has with his patients - he said “ Medicare, Obamacare, Yourcare, Icare – it doesn’t matter what program we are under,” the system is broke and it doesn’t allow doctors to spend adequate time with their patients and there has to be a way to get the most out of our appointment times. He also touched on that it is virtually impossible for new doctors to practice medicine the old ways – they can’t afford to set up private practices because of all the costs associated with oversight programs and have to find partners and work for other corporations. It is always interesting to hear the different perspectives from these doctors.
I hope you learn something from this- I know I did. And for the record, I skipped the second talk that evening.
be well, Lu
COMMUNITY LEADER
Hey Lulu,
New research by the University of Melbourne (just published July 3rd - neurology) on Botox to treat MS tremors, though it was only a small double blind and further research will come, it looks quite promising.
[Dr. van der Walt noted that improvement was particularly apparent for postural and kinetic components of tremor. "Both of these tremor components are critical when performing any functional task."
Currently, no treatments are specifically targeted to tremor in MS patients, and none of the standard MS treatments are effective for this tremor. "In general, the benefits of medications such as propranolol or epilepsy treatments such as carbamazepine and topiramate, are 'marginal,' " Dr. van der Walt explained.]
So my question if you get a chance, is regarding tremors: Apart from the recent Australian research on the benefits of Botox for postural and kinetic tremors. Are there any other promising developements into treatment plans, that are showing a reduction of these types of tremors?
The other question i had was regarding the discrepancy of research based recommendations on the long term benefits of 'early intervention' vs the reality in the neurologists office. I havent found the words yet lol along the lines of.... Why are patients clinical signs still commonly a secondary consideration to the primary (or prefered by neurologists) consideration of MRI changes?
Anyhoo hope you get something out of the experience, I know we usually do! :o)
Cheers...........JJ
New research by the University of Melbourne (just published July 3rd - neurology) on Botox to treat MS tremors, though it was only a small double blind and further research will come, it looks quite promising.
[Dr. van der Walt noted that improvement was particularly apparent for postural and kinetic components of tremor. "Both of these tremor components are critical when performing any functional task."
Currently, no treatments are specifically targeted to tremor in MS patients, and none of the standard MS treatments are effective for this tremor. "In general, the benefits of medications such as propranolol or epilepsy treatments such as carbamazepine and topiramate, are 'marginal,' " Dr. van der Walt explained.]
So my question if you get a chance, is regarding tremors: Apart from the recent Australian research on the benefits of Botox for postural and kinetic tremors. Are there any other promising developements into treatment plans, that are showing a reduction of these types of tremors?
The other question i had was regarding the discrepancy of research based recommendations on the long term benefits of 'early intervention' vs the reality in the neurologists office. I havent found the words yet lol along the lines of.... Why are patients clinical signs still commonly a secondary consideration to the primary (or prefered by neurologists) consideration of MRI changes?
Anyhoo hope you get something out of the experience, I know we usually do! :o)
Cheers...........JJ
If you can, ask about their input or stance about if gluten and lactose is a symptom trigger for most MS patients. I keep running into people and suggesting eliminating gluten versus taking another prescription drug and so many say they are amazed how much less numbness, tingling and spasms they experience once gluten is removed from the diet.
I would love to know if there is a wide belief that all MS patients should avoid gluten, not just patients trying this and that and finding what helps and sharing that by word of mouth!
Jen
thanks again for taking time to obtain answers about our concerns.
I'm at my wits end with working memory problems, I was told to have a sleep study, I've been on the cpap for I think six months now. The Dr stated that in some cases the working memory can improve with the Cpap- no change for me to date.
So here's my questions,
sleep apnea can cause lesions, the Dr sleep said lesions caused by sleep apnea aren't in the classic area of the brain for MS. true or not ?
What can be done to improve working memory problems?
After the base line neuropsychological testing test to establish the condition, is annual or other testing recommended?
Why isn't this consider on the McDonald criteria ?
thanks
JB
I'm at my wits end with working memory problems, I was told to have a sleep study, I've been on the cpap for I think six months now. The Dr stated that in some cases the working memory can improve with the Cpap- no change for me to date.
So here's my questions,
sleep apnea can cause lesions, the Dr sleep said lesions caused by sleep apnea aren't in the classic area of the brain for MS. true or not ?
What can be done to improve working memory problems?
After the base line neuropsychological testing test to establish the condition, is annual or other testing recommended?
Why isn't this consider on the McDonald criteria ?
thanks
JB
I want to add to Sheila's question. Maybe if you have a chance, ask them about really high pelvic floor spasticity/tone related to MS?
We haven't had a neuro talk around here in ages - at least that I've heard of....
Thanks,
Kelly
We haven't had a neuro talk around here in ages - at least that I've heard of....
Thanks,
Kelly
Hi, Lulu,
If it is not too embarrassing, can you please ask if MSer's that have lost the message from the brain to the internal anal sphincter muscle, benefit ffrom program aimed at helping this issue.
TIA
I'll be out-of-twon from tomorrow until Thursday.
With that said, I had better to to bed, it's 11:30 P.M. here in NW IN.
xoxo
Sheila
If it is not too embarrassing, can you please ask if MSer's that have lost the message from the brain to the internal anal sphincter muscle, benefit ffrom program aimed at helping this issue.
TIA
I'll be out-of-twon from tomorrow until Thursday.
With that said, I had better to to bed, it's 11:30 P.M. here in NW IN.
xoxo
Sheila
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
