Aa
MS Annual Meeting
Here is what the Neurologist said...
The Disease of MS may be evolving (something I never considered). MS may be different diseases. There are better outcomes with MS these days.
Disease Modifying Medications are not one size fits all. All of us are individuals like you do not treat all people with high blood pressure the same. There are different degrees and people react to treatments differently.
With all medications you have to way effectiveness and safety. With all patients you have to way the risk benefit. Those who are sicker may want to take higher risks for the benefits. Only time will tell with the oral medications.
Gilenya is supposed to work by trapping the T cells in the lymph nodes. Clarity the one that has not been approved by the FDA blocks 50% of the lymphosites.
In studies Ampyra helped 50% walk better. The draw back is it lowers the seizure threshold.
The two aspects of MS are Disease Management, slowing progression and symptom management. For those with progressive forms of MS that may be only symptom management but this is important for quality of life.
She jokingly said Neurologists are not real Doctors meaning you need to have a PCP and do everything for your over all health and not rely on your Neurologist for all your health care. She said many people with MS stop cancer screening for example.
As far as stem cell treatments she said in a perfect world you would want reversal of damage. She said in the near future it may be good for stabilization. She said they are thinking may be you do not have to kill the immune system but use your own stem cell filter them and shoot them right back in. Possibly in the Central Spinal Fluid. One issue is where do you put stem cells? In Parkinson's they have an idea of the area of the brain but no one knows with MS.
The problem with studies of stem cells is getting uniformity from one place in the country to the other. Also there may be an increase of cancer down the road with a stem cell transplant.
She says Vitamin D may be a risk factor for getting MS but it is not a treatment. She says it is important for over all health. To much supplementation of vitamin D leads to calcium in the blood with the risk of Kidney stones or seizures.
She said about the Liberation Therapy there were so few people in the original study and it is not reproduceable.
She talked about Mindfullness Meditation and living in acceptance. You do not have to like the disease but when you get to the place where you can say "It is what it is" you are much healthier over all.
On the question of how often you should you have an MRI? There is no consensus. Some have MRIs to diagnose and then never again. Some have MRIs every year. Some when there are big changes. Why are there fewer MRIs of the whole spine? One it is really expensive and second you have to lay still much longer.
She said glucose metabolism is not normal in MS.
She said with Relapsing Remitting you have an active immune system and with the progressive forms an innate immune system.
As far as why there is no cure for MS at this time. She reminded us there is no cure for the common cold, diabetes, or HIV but with diabetes and HIV they can be managed.
Alex
The Disease of MS may be evolving (something I never considered). MS may be different diseases. There are better outcomes with MS these days.
Disease Modifying Medications are not one size fits all. All of us are individuals like you do not treat all people with high blood pressure the same. There are different degrees and people react to treatments differently.
With all medications you have to way effectiveness and safety. With all patients you have to way the risk benefit. Those who are sicker may want to take higher risks for the benefits. Only time will tell with the oral medications.
Gilenya is supposed to work by trapping the T cells in the lymph nodes. Clarity the one that has not been approved by the FDA blocks 50% of the lymphosites.
In studies Ampyra helped 50% walk better. The draw back is it lowers the seizure threshold.
The two aspects of MS are Disease Management, slowing progression and symptom management. For those with progressive forms of MS that may be only symptom management but this is important for quality of life.
She jokingly said Neurologists are not real Doctors meaning you need to have a PCP and do everything for your over all health and not rely on your Neurologist for all your health care. She said many people with MS stop cancer screening for example.
As far as stem cell treatments she said in a perfect world you would want reversal of damage. She said in the near future it may be good for stabilization. She said they are thinking may be you do not have to kill the immune system but use your own stem cell filter them and shoot them right back in. Possibly in the Central Spinal Fluid. One issue is where do you put stem cells? In Parkinson's they have an idea of the area of the brain but no one knows with MS.
The problem with studies of stem cells is getting uniformity from one place in the country to the other. Also there may be an increase of cancer down the road with a stem cell transplant.
She says Vitamin D may be a risk factor for getting MS but it is not a treatment. She says it is important for over all health. To much supplementation of vitamin D leads to calcium in the blood with the risk of Kidney stones or seizures.
She said about the Liberation Therapy there were so few people in the original study and it is not reproduceable.
She talked about Mindfullness Meditation and living in acceptance. You do not have to like the disease but when you get to the place where you can say "It is what it is" you are much healthier over all.
On the question of how often you should you have an MRI? There is no consensus. Some have MRIs to diagnose and then never again. Some have MRIs every year. Some when there are big changes. Why are there fewer MRIs of the whole spine? One it is really expensive and second you have to lay still much longer.
She said glucose metabolism is not normal in MS.
She said with Relapsing Remitting you have an active immune system and with the progressive forms an innate immune system.
As far as why there is no cure for MS at this time. She reminded us there is no cure for the common cold, diabetes, or HIV but with diabetes and HIV they can be managed.
Alex
Thanks Lulu for the compliment. With my cog fog it is hard especially at the meetings with so many thing discussed. I have this weird word block like I do not understand a normal word.
I want to find out more about the Glucose metabolism. May be I can get one of the Librarians at the Health Sciences Library to help me research it.
Alex
I want to find out more about the Glucose metabolism. May be I can get one of the Librarians at the Health Sciences Library to help me research it.
Alex
Thanks for relaying the information from the meeting. The glucose metabolism was indeed another interesting twist of MS.
I appreciate your involvement and acting as a liaison for us by getting us the news and information directly from the source.
Ren
I appreciate your involvement and acting as a liaison for us by getting us the news and information directly from the source.
Ren
Great stuff, Alex. Thanks for taking good notes and sharing this with us.
the glucose metabolism is interesting - my glucose is on the higher side of normal.
The stem cell implant without knocking off the immune system first would be so wonderful - I hope someone is studying this.
you make a great reporter!
Lulu
the glucose metabolism is interesting - my glucose is on the higher side of normal.
The stem cell implant without knocking off the immune system first would be so wonderful - I hope someone is studying this.
you make a great reporter!
Lulu
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