Friday, December 20, 2019

Sign up for an OSU Study on Cognitive Function

Are you interested in an intervention to improve cognitive function in multiple sclerosis?

 

The Clinical Neuroscience Lab at The Ohio State University is conducting a 6-month (minimal involvement) intervention study to potentially improve thinking in those with multiple sclerosis


The study requires five visits to the OSU campus and 5 minutes a day to monitor health behaviors. 


Participants will receive an activity tracker like a Fitbit OR a water-intake monitor Participants are compensated for their time and parking. 


You may be eligible for this study if you:

• Are between the ages of 30-59
• Have a clinically definite diagnosis of relapsing-remitting multiple sclerosis (RRMS)
• Have no other neurological or psychiatric diagnoses besides RRMS

If you are interested in participating, we would be gratefulto hear from you! 


Please visit our website at: http://bit.ly/CNLongoing to take a screening survey or contact the study coordinator at: ra@clinicalneurosciencelab.com or 

614-292-9568 more information.

Wednesday, December 18, 2019

Sunday, April 28, 2019

Multiple Sclerosis Drug Company Links to Live Learning Events




 The following are links to pages where you can sign up for Live Events put on by the Drug Companies who make Multiple Sclerosis drugs that are in your area to learn about Multiple Sclerosis Treatments and Therapies.    

The events are usually presented by prominent area doctors in the field and also some have patients who have taken the drug tell personal stories. 

Most of these events include a lunch or dinner and provide a great opportunity to learn new things and to meet with others who also have MS.   



Understand that Multiple Sclerosis drugs are very expensive, so drug vendors are usually more than happy to supply an extravagant meal along with their presentation. I have personally attended many live events and have always learned something from them, met great people (and usually never walked away hungry. lol.)

Company Link

Aubagio - Aubagio is an Oral Disease Modifying Drug made by Genzyme also known as Teriflunomide. Genzyme hosts several Live Events throughout the year that you can attend       

     Aubagio Live Events Page
 

Ocrevus is an infusion drug for both relapsing and progressive Multiple Sclerosis. The first infusion is split over 2 weeks and consecutive infusions are given every six months. No PML has been reported as yet with this drug however it does carry some risk. 

Ocrevus Live Events Page
Image result for gilenya

Gilenya - Gilenya is an Oral Disease Modifying Drug Made by Novartis also know by the name Fingolimod. Novartis hosts both Online and Live events you can attend to learn about their offerings.

  Gilenya Live Events Page

  

Rebif - Rebif is an injectable Disease Modifying Drug made by EMD Serono also known as interferon beta 1-a. Rebif has a very informative website called MSLifelines. MSLifelines hosts many live and online events that allow you to learn more about Multiple Sclerosis and Rebif. EMD Serono usually requires that you are taking Rebif for you to attend an event but some are for anyone with MS. The Come to Chat events are especially good and very informative and help patients learn coping mechanisms.








Rebif Live Events Page
AMPYRA






Ampyra - Ampyra, also known as "The Walking Pill" and by the drug name dafampridine, is one of the few types of Drugs that actually attempt to help MS symptoms made by the drug company Acorda.  Ampyra is made to help patients walk faster and achieve better balance. It does help some patients achieve much better results. 
Ampyra Live Events Page 

plegridy logoPlegridy - Plegridy is an injectable Disease Modifying Drug made by Biogen also known as peginterferon beta-a. The drug is similar to Avonex only it is not given as frequently.
Plegridy Live Events Page





Acthar Gel - Acthar is an injectable drug also know as corticotropin by Questcor that is used to treat relapses in those with MS in lieue of taking steroids. Acthar may be a treatment option for you. 
Achtar Live Events Page
 lemtrada logo



Lemtrada is an injectable infusion taken for a full week and only once per year. It is also know as alemtuzumab and like Tysabri is a monoclonal antibody drug.  Lemtrada is produced by Genzyme. 




tysabri

TYSABRI® (natalizumab) is a once monthly infusion prescription medicine used to treat adults with relapsing  forms of Multiple Sclerosis (MS).  Tysabri has one of the highest success ratings in preventing new lesions but carries considerable risks of PML. 
Tysabri Live Events Page 





Tecfidera - Tecfidera is a recent addition to the disease modifying drugs. It is a pill that is usually taken twice per day. The company that makes Tecfidera is the same one that makes Tysabri. Biogen. Tecfidera also carries a slight risk of PML so you will want to learn about this drug before you consider it. It has worked quite well for those patients receiving the drug.
Tecfidera Live Events Page

Copaxone is an injectable drug taken daily or three times per week


 
Mayzent Logo




________________________

Now Approved
MAVENCLAD® (cladribine) tablets is indicated for the treatment of relapsing forms of multiple sclerosis (MS), to include relapsing-remitting disease and active secondary progressive disease, in adults     
___________________________________







MSWorld.org hosts an events page to find MS Events
MSWorld.org Events Page

Friday, April 5, 2019

NEW REFRESH STUDY FOR FATIGUE

If you have MS pleas consider participating in this study.

DETAILS
Type of MS: PPMS|PRMS|RRMS|SPMS
Treatment mode of action: To reduce fatigue
Number of Subjects: 610
Medication: 6-week educational fatigue management course
Location: Illinois|Minnesota|Ohio
Institutions: Case Western Reserve University, University of Minnesota, Dalhousie University Contact Information
Dr. Matthew Plow
1-800-631-3272

Funding:

Patient-Centered Outcomes Research Institute

Description

Participants will engage in a six-week program taught by clinical experts (occupational therapists) over the phone, internet, or in-person. Participants may learn strategies that will empower them to reduce fatigue and reduce the impact of fatigue on quality of life.

Please complete intake form at https://redcap.case.edu/surveys/?s=8LAEJLTFRK
 

Monday, February 1, 2016

TSA Disability Card for travel

Did you know the Federal Transportation Security Association offers a downloadable travel identification card for those with disabilities?
Using this card may help a disabled person more easily get through security checkpoints.

It can be downloaded from this link:


Thursday, August 13, 2015

Multiple Sclerosis Support Groups in OHIO

There are many support groups for Multiple Sclerosis throughout the state of OHIO. The problem is sometimes finding them. There are a lot of pages out there on the web that list local groups. Rather than try and duplicate them I will instead make a listing here so you can go directly to the link and find a group in your area.

Multiple Sclerosis Support Group web page listings for OHIO

MSFocus has a page that lists several groups by county throughout Ohio.
http://www.msfocus.org/support-groups.aspx?state=OH

Ohio MS is an online Facebook Support group with over 100 members
https://www.facebook.com/groups/ohmssupport/


This page at the National Multiple Sclerosis Society lists groups in Southern Ohio
http://www.nationalmssociety.org/Chapters/OHG/Groups-and-Discussions

The OhioBuckeye NMSS list of groups is here:
 http://www.nationalmssociety.org/Chapters/OHA/Groups-and-Discussions

Columbus MS Friends Support group offers many resources for those in that area
http://www.meetup.com/Columbus-MS-Friends-Support/

MSConnection.org offers several very good Online Support groups for MS.
http://www.msconnection.org/Support/Support-Groups

This page on Healthline.com list 11 Online support groups that are all very good
http://www.healthline.com/health/multiple-sclerosis/support-groups#Overview1

There are also many pages on Facebook and Accounts on Twitter that offer support for Multiple Sclerosis. Use the search feature. I post info in the MSOhioBuckeye National Multiple Sclerosis Society Facebook Group when I can.
https://www.facebook.com/groups/ohmssupporthttps://www.facebook.com/groups/ohmssupport

Wednesday, June 17, 2015

What does a connection to the Immune system to the brain mean to those with Multiple Sclerosis? Manipulate your lymphatic system to relieve neck pain?

You may have recently read in the Huffington post or elsewhere about a new landmark research finding about a link between the brain and the immune system. The news sparks all sorts of inferences that this new finding can be the path to treatment from brain ailments from Alzheimers to Multiple Sclerosis.

The researchers found that a previously unknown connection exists between our lymphatic system and the brain. The lymphatic system runs throughout our body and works in tandem with other parts of the immune system. Lymph fluid that runs through the lymphatic system helps carry toxins out of our body. That is a laymans description. 
brain immune system

Above on the left is a depiction of the originally drawn lymphatic system that was thought to end at the brainstem and on the right is a depiction of how the lymphatic system is now thought to work including the brain. 

This IS fabulous news for us MS'ers but before you rush to google and start trying to search on what you can do to improve your lymphatic system please heed this warning I am about to give.

There is not one single LEGITIMATE web site that has an equivocal resource that I would trust, that answers the question about improving or boostin your Lymphatic system. So don't waste your time searching. I searched for days, and trust me on this one. None exist. People trying to sell you supplements are hucksters..stay away..most don't work. 

That being said I did find some VERY helpful suggestions on ONE site that I tried and it actually helped relieve my neck and shoulder pain that I wake up with every morning. Many of the websites I visited suggested "draining" the lymphatic system but did not suggest how. This did get me curious about those statements so I dug I little deeper.  I found one web site in particular by a Dr. David Williams that gave "exercises" to help "drain" your lymphatic system. Now I am not buying any of this mind you, but...one of the suggested exercises I tried, and the results were phenomenal!

I wake up every morning with a stiff neck and shoulder pain. 
I tried the below described procedure from the above website and was amazed that my neck and should pain was gone! And it lasted the whole day. Dr. Williams called it Lymph Milking..and here is the instructions, I call it neck manipulation. : )
---------------------------
"Lymph “Milking”
Another way you can help lymph nodes drain is by gently rubbing or “milking” it toward the heart. This works quite well, for example, with sore throats or sinus congestion. By using a lubricant, you can start under the jaw and milk down the throat on each side of the big muscle on both sides of the neck.





Then start at the base of the skull with your thumbs just behind the ears. Push under the skull, into the neck, with firm pressure slowly going toward the collar bone. Continue to do this, and each time move the thumbs closer together toward the spinal column.




This manipulation alone has relieved headaches and neck tension. Always “milk” or massage the lymphatic system (as well as the circulatory system) toward the heart. If you’ll notice, massage therapists always work toward the heart. Massage therapy is good for the circulation and one of its benefits is stimulating the drainage of the lymph system."
-----------------------------
The main part of this manipulation that worked for me was using my thumbs starting just under my ears and pushing with some firmness rubbing down to the base of my neck and continue in to the base of my skull going down. I do this 5 times. I do not use any lubricant though. Then what is not mentioned and I suggest that you add is, I touch my ear to my shoulder 5 times on each side. Finally I roll my shoulders from front to back 5 times. 
As far as the part about pushing toward the heart this makes sense. Most good massage experts are trained to massage towards the heart to improve the blood flow in the affected area. 
So does this "drain" the lymphatic system? I have my doubts but it sure as hell does relieve the neck pain that I have been experiencing for decades. This is now part of my everyday morning routine prior to getting out of bed. And not having to deal with pain in at least one part of my body due to MS is a GodSend!
I hope this helps some of you out there!