MS Lecture

[HVAC]

I went to the MS Society Annual meeting yesterday. The lecturing MS Specialist said they have figured out MS is not only a white matter disease but also largely a gray matter disease. He said the MRIs under 7 T are showing very little. He said pain and cognitive problems are very real.

He also said if a Neurologist writes in his notes you have a progressive form of the disease the insurance companies will deny treatments that work better for Relapsing Remitting.

Probably not new information, but it is nice to hear a Doctor say it.

The keynote speaker said he likes it when his patients have a list of all their doctors. A list of all there medications and a list of medications they have been on and why they did not work.

Alex

[HVAC]

You can hijack my post anytime sister.

Funny you mention Tysabri the MS Specialist mentioned that he was alarmed the cases of PML had increased since he did his last power point a few months ago from 14 to 23. He kinda hinted it will probably be pulled from the market. Originally they were blaming the PML on avonex and tysabri used in combination. He says he only uses it when nothing else can be used.

[rendean]

I apologize for hijacking your post. Didn't mean to.

Ren

[Lulu54]

I don't have a close NMSS chapter - but a few splinter groups around here that meet, and they have good speakers and topics.  The neuro for Tuesday's talk - I have heard before and he was very good and was not particularly pro-any particular drug.  

I will be curious to hear what he says about the latest tysabri news- I'm going to do a separate post about that rather than hijack this one!

[rendean]

You indeed have a very good Chapter. The closest chapter to me is almost an hour away and holds ALL it's meetings at night.  There is another at an MS center, again an hour away that holds meetings on Saturdays and during the week.

I'm jealous ;-). wish my Chapter and the surrounding ones were more active.  I contacted the main GA chapter and they sent me info on starting a local chapter in my area.

Thanks Alex for sharing the information you  learned from your meeting!

Ren

[rendean]

Hi Lulu,

First a big hug to you for all that you have endured this past week. My condolences.

Second, I attended a program sponsored by Biogen with same topic title. They did very little discussion on the subject of tips and suggestions for managing MS. It was more of a hawking session for more people to take Tysabri. They didn't even discuss Avonex which is also their product.

The big piece of information they shared was the screening process they use in the US with everyone who takes Tysabri. It has checks and double checks to try and catch any signs of PML BEFORE it becomes a life-threatening issue. They had a "patient advocate" that spoke of her experience of the drug. Her only MS symptoms , even at the begining of the treatment, are fatigue and numbness and tingling of her right hand and arm.

Biogen also had a neuro from one of the MS centers I went to and who could not come to a dx. She was not good at questions and answers but in her defense she was a last minute fill-in. If they  have a prepared neuro in your presentation then perhaps you can glean more information

Will be looking to see if you can relate any good information from your meeting!

Ren

[HVAC]

Our local MS Society Chapter sends out brochures as well as has a printed an e-news letter. Our chapter is one of the best in the country. This is the third all day event I have gone to. They are only $5 and you get a good breakfast and lunch.  One of the workshops was mindful stress reduction.

[cali1892]

Thanks for the great info.  How do you find where the lectures are going to be?

[Lulu54]

Alex, good for you to take advantage of this event.  I go to all of them that I hear about around here , and always learn something new or have some bit of information confirmed for me.  

There is a talk this Tuesday, sponsored by the mfg. of Tysabri, that I am going to.  The topic is *Living with MS and Managing the Symptoms.*   I hope to pick up some new tips for everyone.  

be well, be smarter!
Lulu

[Sarahsmom46]

Good info Alex. Thanks for sharing.  I wish we had those meeting around here.  You would think that the DC area would have more going on, but either I'm not hearing about them or they aren't happeneing.   I'm glad you are involved though.  

Julie