Wednesday, March 30, 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:


Monday, February 1, 2016

Multiple Sclerosis Drug Company Live Learning Event Signup Links


Image result for ms 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 learn new things and to meet with others who 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.) Note most all of these treatments are only approved for the Relapsing forms of Multiple Sclerosis.
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Image result for aubagio


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 and most are at very nice restaurants or venues and include a meal. Go to https://www.aubagio.com/multiple-sclerosis-events to find events in our area.
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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. Go to  http://www.gilenya.com/c/living-with-ms/events  to find their events.

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Image result for rebif

     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. Most live events include a meal. Go to https://www.mslifelines.com/ms-lifelines-live-events to find events.
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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 hosts live educational events throughout the country usually that include a meal at very nice restaurants. Go to this link to find Ampyra Live events in your area: https://ampyra.com/events
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 Plegridy - Plegridy is a fairly new 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. Go here to learn about events available to learn about Plegridy https://www.plegridy.com/support/events
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     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. You can attend events in your area where you will learn from an MS healthcare professional about Acthar and hear a firsthand account of a patient's experience with this treatment. These events are called "MS Relapse Symptoms: Understanding Your Treatment Choices" and "Multiple Sclerosis (MS): Making Sense of the Symptoms and the Science."You will also learn:How to distinguish between relapses and pseudo-relapsesAbout the importance of treating relapsesHow to talk about relapses with your healthcare providerAbout the available treatment options for MS relapses


Go to http://www.msrelapseprogram.com/
_________________________________________________________________ Lemtrada is a fairly new 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. The best way to learn about the drug and see if they are offering events is to sign up for their newsletter on the patient page at https://www.lemtrada.com/events
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TYSABRI® (natalizumab) is a once monthly infusion prescription medicine used to treat adults with relapsing  forms of Multiple Sclerosis (MS). TYSABRI increases the risk of PML. When starting and continuing  treatment with TYSABRI, it is important that you discuss with your doctor whether the expected benefit of TYSABRI is enough to outweigh this risk. See Risk Information.. Tysabri has one of the highest success ratings in preventing new lesions but carries considerable risks if you have PML. It worth checking out if other drugs are not working well enough. Find Tysabri events at this link: https://www.tysabri.com/support/ms-events
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Tecfidera® (dimethyl fumarate)

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. Biogen has been having several live events lately to teach people about this new addition and you may sign up for them at this link: https://www.tecfidera.com/support/ms-events
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If I missed a MS drug company that provides great live events please let me know in the comments.


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. : )
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"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.

Lymph milking exercise

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.

Lymph milking exercise

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."
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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!




Sunday, April 12, 2015

Snake Oil Multiple Sclerosis safety on the web. A fool and his money...

Well it is going on 5 years now since I was first diagnosed with Multiple Sclerosis. I am by no means a doctor but I have attended enough drug company presentations, met enough neurologists and read so much about Multiple Sclerosis in those 5 years that I can say that I know when something is a scam.

Since the dawn of time there has always been snake oil salesmen. It is pretty sickening that these people still exist today to prey on the less fortunate. I recently ran across one site about a "Natural Cure" for MS. This pos huckster claims the following:
 " What does this mean? This means you should be dealing with the REAL problem: Your "overactive immune system" is the problem we need to deal with.  Taking drugs to kill the symptoms may temporarily help but they are NOT the real solution. I used to give my patients Copaxone (glatiramer acetate), interferon beta-1a/1b injections, courses of steroids and more but they offered no REAL help. They may have eased the symptoms for a while but this is not the real solution and nobody claims it is."

The truth is NONE of the Disease Modifying Therapy (dmt) drugs are designed OR claim to help any Multiple Sclerosis symptom. And any drug rep from the currently available DMT pharmaceutical company that tells you that is LYING and should be reported to the FDA. DMT's only help slow and sometimes prevent progression of the disease which in turn limits the number of relapses a patient has. Steroids which is not considered a DMT does ease symptoms because it reduces swelling that is going on in your brain. But Copaxone, interferons, etc do NOT ease symptoms as stated above. I can not fathom a Neurologist worth a pound of salt even saying this!

I am not going to give you the website for the above huckster but he is charging $47.99 for his "cure" and of course he has an affiliate program that he pays people a small stipend to propagate his BS throughout the web. Google some of the quoted text above and you will easily find this morons site. 

The whole point of what I am getting at here is, we are so desperate for a cure (or at least relief of symptoms) that we will try just about anything. Desperation should not be a moniker to allow you to believe everything that is printed on the web. 

So what IS proven to help with the symptoms we are faced with from Multiple Sclerosis? Here is the thing..while most patients may experience SOME similar symptoms, very few experience ALL of the same symptoms.  Read that last sentence again and commit it to memory. 

What this means is that Multiple Sclerosis being an autoimmune disease that affects your brain and central nervous system is one of the most unpredictable and challenging diseases that researchers and doctors have to deal with. The brain where most activity(not all as some people have activity solely in the spinal cord) happens is still quite misunderstood. There are trillions of connections in the brain. Trillions with a T. 

There have been brain mapping projects for hundreds of years. Humans have tried to learn how the brain works and only now are we STARTING to understand somewhat how it works. Having a daughter who died from a deadly cancerous brain tumor, I have spent the last 15+ years following brain cancer treatments. We still do not have a cure for brain tumors to this day. We simply do not have a full understanding of brain tumors because their symptoms and prognosis are so unpredictable just like MS. Brain tumors if left untreated will most likely kill you. That is rarely so nowadays when it comes to Multiple Sclerosis.  

So that is a long winded laymans explanation why your doctor can not tell you what is going to happen, if a certain DMT, diet, jumping jacks, etc. will or will not help and whether or not you will progress to the point of being in a wheelchair. It is also THE reason why one treatment  slows or helps prevent relapses more for one than it does in another person, and why one possible persons method of relieving their OWN symptoms will NOT work another. 

One thing IS certain, the DMT's that the huckster describes above as being so bad for you have MODIFIED the course of the disease for many many people. It is hard to prove exactly how many..because of the unpredictability of MS. 

So I attended an interesting MSfocus group this past weekend and while I can not divulge exactly what was discussed, I will say that there was concurrence on a few things that do help. 

Basically it was unanimous that reducing stress, a healthy diet, and staggered mild exercise (walking, exercise bike, yoga) helped people at least feel a little better. While it was very difficult,we tried to come up with solutions that could "fit" most all patients that have MS because not all MS patients experience the same symptoms. 

Those that were affected by heat for example suggested limiting their time in it or used cooling products. Though I met one gentleman recently at an event with MS who liked going in the Hot Tub daily! This is a excellent example how we had a hard time doing this. It all boiled down to healthy living and is something that is not really MS specific.

One thing I myself have personally found that helps is taking a probiotic. I have suggested to others I have met with MS and they have tried it with some good results. There are many studies starting about good flora in the gut and how it affects disease. It is an easy try to see if it helps and I will not charge you a penny for my advice. Go get yourself a bottle of Phillips (brand) Colon Health and take it for a month and log daily how you feel. If after a month you are not feeling at least a bit better. Stop. No harm. But after you stop, also log daily how you feel for a month and note any differences. Make it your own experiment. You can get Phillips about $18 a bottle at WalMart. 
Another of MY things that work is eating pineapple. I have other issues besides MS but I learned that pineapple is one of the main ingredients used in Pancreatic Enzymes given to Whipple Surgery patients to aid in digesting their food. I eat just a small cup of pineapple a day instead of the enzymes and my body functions properly when I do. 

Every time you find something natural that isn't harmful that makes you feel better write it down and make it a habit. If something is safe..there is NO reason not to give it a shot. You CAN feel better with MS. 
Researchers claim to be close to a cure. Lets hope that is true. But until them, don't be sucked into the drivel spewed by the scum of the internet. 





Saturday, April 4, 2015

Approved Disease Modifying Drugs(DMD) for Multiple Sclerosis

The following are the approved Disease Modifying Drugs(DMD) for Multiple Sclerosis.


Brand name: Betaseron® 
Chemical name: interferon beta-1b
Frequency: Every other day; subcutaneous (injected just under the skin)
Year approved: 1993
For more info or financial help: 800-788-1467, betaseron.com/betaplus/affordability
Brand name: Avonex®
Chemical name: interferon beta-1a
Frequency: Once a week; intramuscular (injected directly into a muscle)
Year approved: 1996
For more info or financial help: 800-456-2255, msactivesource.com
Brand name: Copaxone®
Chemical name: glatiramer acetate
Frequency: Daily; subcutaneous
Year approved: 1996
For more info or financial help: 800-887-8100, copaxone.com/aboutsharedsolutions.aspx
Brand name: Novantrone®
Chemical name: mitoxantrone
Frequency: Every three months
Year approved: 2000
For more info or financial help: nationalMSsociety.org/novantrone
Brand name: Rebif®
Chemical name: interferon beta-1a
Frequency: Three times weekly; subcutaneous
Year approved: 2002
For more info or financial help: 877-447-3243, mslifelines.com
Brand name: Tysabri®
Chemical name: natalizumab
Frequency: Every four weeks
Year approved: 2006
For more info or financial help: 800-456-2255, msactivesource.com
Brand name: Extavia®
Chemical name: interferon beta-1b
Frequency: Every other day; subcutaneous
Year approved: 2009
For more info or financial help: 800-245-5356, patientassistancenow.com
Brand name: Gilenya®
Chemical name: fingolimod
Frequency: Once a day 
Year approved:
 2010
For more info or financial help: 800-245-5356, patientassistancenow.com
Brand name: Aubagio®
Chemical name: teriflunomide
Frequency: Once a day
Year approved: 2012
For more info or financial help: 855-676-6326, MSOnetoOne.com
Brand name: Tecfidera™
Chemical name: dimethyl fumarate
Frequency: Twice a day
Year approved: 2013
For more info or financial help: 800-456-2255, msactivesource.com