Welcome to MS Conversations!

MS Conversations is the Multiple Sclerosis Association of America’s new blog!

It is our hope that this blog will provide a forum for you, the MS Community, to share your triumphs & struggles, tips, resources, and much more.

We very much want this to be a blog for YOU, so please feel free to leave comments and suggest topics for us to cover in the future!

Just as a reminder that MSAA does have a terms and conditions policy for our website and blog – so be sure to review before posting any comments.

Please check back on Monday and in the coming weeks for updates on the Swim for MS Pool Party, plus more tips and shared stories!

Let’s start the conversation!

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Comments

  • Hosting a Charity Event for MS-Ladies night out MOM PROM on Aug 18, 2012 @ the VFW in New Port Richey, FL. Tickets still available so come and dance for MS Ladies. Lots of fun see website for much more info.

  • Alexis says:

    I just have tons of questions about MS. I haven’t been diagnosed but I went to the neurologist and I have to have MRI’s done. She thinks that I have MS and I have multiple symptoms. I’m scared, not sure what to think…Hopefully I can have some assurance from you ladies and guys.

    • mweisser says:

      We would be happy to assist you and provide you with any available information and resources. Please contact our Client Services Helpline at 1-800-532-7667 x 154 or email us at MSQuestions@mymsaa.org.

    • john says:

      Also went through the same thing when first diagnosed.But it has actually been a blessing indeskize,can’t spell a lick either!Hang in there it will get better,life goes on!I had to change my whole life,for the better!!My symptoms are manageable with avonex,once a week injections!!Had to quit a job I loved because of balance issues & numbness in my hands & feet,was General Foreman for a company that repaired off shore oil rigs.But I got my disability approved within 3 months after retiring,just now got medicare approved ,took 2 years.But thats normal for everyone regardless!!Last MRI showed I have 3 lesions on my brain!It also gave me a chance to get involved with my church doing volunteer work.I LOVE IT!!!

  • Pamela Boundy says:

    I have done six tysabri infusions, and my left leg has lost all of its muscle tone. I am concerned about this, and would like to know if this is common, and what can I do to improve this.

    • mweisser says:

      Thank you for reaching out with your concerns. I am sorry to hear about your troubling new symptom. Severe muscle atrophy is not a symptom which is typically associated with MS unless a person is largely immobile. People with MS can have other co-occurring health conditions or may be taking medications which can have a variety of potential side effects; therefore, it is very important to follow up with your treating physician directly to discuss your concerns. Your physician should be able to help determine the cause of your symptom and direct you to treatment or therapeutic options which may be of assistance.

      If you need further assistance please contact our helpline at MSquestions@mymsaa.org or 1-800-532-7667 x 154.

  • Barb says:

    My ms is giving me terrible trouble lately I am having some new symptoms that i really would like to discuss thank you

  • Ila says:

    I was diagnosed with MS 17 months ago i thought i had excepted it but i really haven’t i just find it hard to deal with. Most days lately i find myself asking why me, why so young, i am only 24 and my neurologist can not believe how far progressed my MS is compared to other patience he treats. I have been dealing with impaired motor skills, loss of feeling in my hands since my last exacerbation i just get scared on how much worse it can get.

    • mweisser says:

      I am so sorry to hear about your recent MS diagnosis. Unfortunately, it can be very challenging to predict what any one particular person will deal with over time because MS has such an individualized course. You may find it helpful to explore the information we have on our website regarding a new diagnosis: http://mymsaa.org/about-ms/newly-diagnosed/.

      I would hope that by working closely with your doctor you are able to establish a treatment and symptom management plan that works for you. Additionally, I would encourage you to reach out and discuss your particular situation with one of our Client Services Consultants at MSquestions@mymsaa.org or 1-800-532-7667 x 154.

  • Kimberly says:

    I really need “HELP” I have MS. One year now. Is there a psychiatric or therapist that helps with MS patients? I saw 3 therapist and they had no clue about MS. I live in the Detroit area. Thankyou

    • mweisser says:

      Thank you for reaching out to MSAA. Selecting a therapist or psychiatrist can be a complex process because an individual practitioner or specific therapeutic style will not be the right fit for every person. If you feel uncomfortable with a particular therapist you always have the right to explore other providers in hopes of finding a better “match.” MS is a rare disease, so sometimes it can be challenging to find someone specifically specialized in that area. You may have more success in seeking out a provider that specializes in chronic illness. Many providers may be willing to work with you to learn about MS and how it impacts your day-to-day experience. If you are struggling with this type of decision, it is appropriate to reach out to your treating physician to discuss their recommendations or referrals. Additionally, please feel free to contact our Client Services Helpline at 1-800-532-7667 x 154 or by email at MSquestions@mymsaa.org for further assistance.

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