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My daughter has a friend who has been recently had an MRI after having continued migraine headaches. She was diagnosed with remitting recurring type of MS and will be treated right away with interferon (she is insistent it doesn’t go by any other name). I have had PPMS since 2003. I also am a nurse and am well read on MS. I have never heard of Remitting Recurring MS. Can you help me? Does she have the name wrong?
Thank you for your comment. There are several types of MS classified throughout the research. The most common types include Relapsing Remitting, Secondary-Progressive, Primary-Progressive, and Progressive-Relapsing MS. Other types of MS exist as well, though not as common as the previously mentioned forms. At this time, there is no type categorized as Remitting Recurring MS. It is possible that the name was perceived incorrectly. For more information on the types of MS, visit the MSAA website at https://mymsaa.org/about-ms/overview/#TypesofMS. You can also contact the MSAA Client Services team for additional information by emailing MSquestions@mymsaa.org, or call our Helpline at 1-800-532-7667 x 154.
I’m not sure I can answer but will try. It’s called RRMS (relapse recurring MS). I’ve never known of migraines as being the diagnostic determiner of MS without many other tests…and having the neurologist put her MRI up on his screen and note the brain lesions and possibly see if some area of the brain would have more indications typical of where migraines’ may occur…espeically if this is her sole symptom right now? (I have had occasional migraines not connected with MS). Also a more thorough diagnosis with other tests to pursue along with the MRI, etc. With missing information from several sources, and, it sounds like jumping the gun to go on an MS treatment drug until more sure it seems to be MS. And there are other MS drugs to consider. I would have to ask the doctor why he thinks this only one is best (never heard of a single MS drug being presented). Well. I don’t really know enough about her situation. I would probably think a migraine headache script for Imitrex might be given for this single symptom of migraines. May work like a charm…which would lend information to consider along with other diagnostic tests. I tend to look up and study different “things” …and my neurologist and I have a good communication relationship and he will listen, review, consider my input. I’m sorry–have talked too long. Maybe some of this helped? Margie
My neuron told me to come here to talk with someone about wanting to stop using tysabri in a live conversation. I cant seem to find the place. Please let me know what I’m doing wrong.
Thank you for your comment. To speak with someone fromt he MSAA helpline please call 1-800-532-7667 x 154 to connect with a Client Services Consultant.
Please send the Motivator electronically. Thanks
Hi Mary can you email me the address you would like The Motivator to go to? You can reach MSAA at MSquestions@mymsaa.org
Hi, I was dx with relapsing remitting ms in 2001. I am 49 yrs old and ever since then everything that goes wrong with me is blamed on the ms. I also had 2 heart attacks in 2003 and they even blamed that on ms! I know certain things are related to ms like fatigue and spasticity,etc,,, Now I really don’t know what to think or do anymore! Any advice?? Thanks.
Hi Susan – Thank you for your post. Please contact MSAA’s Helpline at (800) 532-7676, ext 154 or email firstname.lastname@example.org to discuss your questions in depth with one of our Helpline Consultants.
Ive got kind of a goofy question that you guys might be able to help me with. I was diagnosed about 11 years ago and after doing some research into my family history I have found out that in the past 6 generations I have been the only person on my mother or fathers side that has ever been diagnosed or had any kind of symptoms of M.S. Could there be any work or enviromental conditions that I have been exposed to that would have triggured my condition?
Thank you for your question. The definitive reason why people develop MS is still unknown. Most researchers believe it is combination of genetic susceptibility and some type of environmental trigger which cause a person to develop MS. You can read more about the theories in the Possible Causes of MS section on our website: https://mymsaa.org/about-ms/overview/#Causes. Many people find that they are the only person in their family line with MS, while others may have more than one family member affected. If you would like to further discuss your concerns please reach out to MSAA’s Helpline at MSquestions@mymsaa.org or (800) 532-7667, ext. 154.
My 42 year old daughter has MS. She has 3 children which keeps her outside a lot in the summer. We have heard there is a cooling vest for MS patients. Where does one go to get this vest and how much does it cost and is there any help with the purchase of this vest?
Thank you for your question. The MSAA has a Cooling Equipment Distribution Program which offers cooling vests and other accessories to individuals with MS. There is an application to complete for the program with eligibility requirements. For more information on this program and to download the program application, see the MSAA website at https://mymsaa.org/msaa-help/cooling/. If you have any questions please reach out to MSAA’s Helpline at MSquestions@mymsaa.org or (800) 532-7667, ext. 154.
I had ms since 8 years ….I wanna come to usa …
I wish you help me of consulting doctors…I wanna know
What new in treating this disease ….
thanks any way
I started Tecfidera when it was first allowed here in the U.S. and I have now no side effects from this MS pill instead of shot other than slightly elevated LFT’s. Do you think I might have to go back to injectios?
Thank you for your comment. Medication decisions and their side effects need to be carefully discussed with your treating physician. You and your physician together should be able to determine whether a change in your treatment course is needed. If you want to discuss this matter further please contact our Helpline at 1-800-532-7667 x 154.
I have 3 sons 56, 53, 46 that M S…How rare is this that 3 brothers in one family have M S..I need all the information you can give me…..And all the up to date research at this time…Thank You….
Thank you for reaching out with your inquiries. Though the disease of MS is not known to be hereditary, the risk of susceptibility can increase if a family member has MS. For first-degree relatives, this risk increases to about 3-4%. Because the disease is so unique and unpredictable, it can vary as to how it can present. For more information regarding family genetics and MS, see the Motivator article on the MSAA website at https://www.mymsaa.org/publications/motivator/winter-spring11/cover-story. For more information you can also contact the MSAA Helpline at (800) 532-7667, x154. Thank you.
Hello. I am making an inquiry in regards to MS. I have been diagnosed with MS, and would like to make contact with fellow sufferers of MS. Is there chat lines available, as I would appreciate support. Thank you.
Thanks for reaching out to MSAA. Please contact the MSAA Helpline at 1-800-532-7667 x 154 or MSquestions@mymsaa.org. You can also chat with a Client Services Consultant at https://www.mymsaa.org/mschat/ when our MS Chat is available. You might also find other individuals with MS through our social media pages, which I list below. Thanks!
I have a friend age 53 with MS in Billings MT. She is having a terrible time with very very little support. If you know of any resources please let me know.
Thanks for reaching out to MSAA. We’re so sorry to hear that your friend has been having such a hard time. You or your friend can contact the MSAA Helpline at 1-800-532-7667 x 154 or MSquestions@mymsaa.org. Here is some more information on the resources and support we offer to people with MS: https://mymsaa.org/msaa-help/ Thanks!
I am sending tou you this email to see if you could help me get a lift on my jeep? Please call me and let me know. And is there any you could help me get some glasses? Thank You Susan Grubb
Thank you for reaching out with your inquiry. Unfortunately, the MSAA does not offer direct financial assistance for these items. If you would like to reach out to our Helpline at 1-800-532-7667 ext 154, additional resources can be provided that may be able to offer assistance.
I was diagnosed with MS in January of 2012 I was 50 years old and my primary care doctor said I was too old for MS. I kept getting worse and finally he had an intern at his office on my November 2011 appointment. She suggested to my primary care doctor that I have MRI’s of the brain/spine w/o contrast. I was called back into his office to discuss the results, which led me to my first neurologist, she did spinal tap and all necessary blood work to confirm I had MS. She diagnosed me with primary aggressive. I started tysabri on March 5,2012. In March of 2013 I had my first relapse and ended up in the hospital for 21 days. My neurologist decide it was time for a specialist since the tysabri was not working for me. I was blessed to find one and he started me on chemotherapy in May of 2013. The chemotherapy has held off new liaisons and seems to be working as far as I am not getting worse. My concern is how many treatments do you think I should have and what would you suggest to replace chemo treatments? Thank you, Deborah
Thank you for reaching out to the MSAA with your inquiry. These are all very important questions and one’s that I would encourage you to discuss with your doctor. Perhaps contacting the doctors office to schedule a time to discuss your treatment and any future plans for treatment would be helpful. If MSAA can be of any assistance in providing information on treatments, please feel free to reach out to us at MSquestions@mymsaa.org or by contacting our Helpline at 1-800-532-7667 ext. 154.
I am ghostwriting college football coach, Frank Hickson’s memoir. Coach Hickson is living with MS. He has hired me to write his memoir. The purpose of this email is to learn if your organization can assist with publication and publicity.
I can be reached by email or phone 860.335.2671
Hi Geoff, thanks for reaching out to MSAA. A representative from our Communications department will be in touch.
This is a great bit of research that you have provided! In 2005 I was diagnosed (at age 50) with RRMS and was immediately prescribed Avonex. It seems to be helping and I do look forward to injecting myself each Friday afternoon, when I return home from my weekly MSAA workout and a group gathering of fellow MS patients. Many of these patients use wheelchairs, and some have been severely impacted. I use a cane, am enrolled at a gym and am working on building my upper body strength. Caveat emptor !
Thank you, thank you so much MSAA!! I just received my cooling vest through your MSAA Cooling Program, you guys are a life saver. The temperature is 105 degrees today here in Las Vegas, Nevada, and they are predicting 111 degrees by this weekend. I don’t know what I would do without the cooling vest, I will even need it for indoors so I don’t get overheated. Thanks again, I really appreciate your help!!
My sister in law had an MRI recently because of TIA. And they found a lesion on her brain, is the starting of MS? she shows a lot of the symptoms of MS.
Thank you for reaching out. Lesions on the brain can be found for several reasons. I would make sure she follows up with the Neurologist and provides thorough information about any symptoms she is experiencing. Please feel free to reach out to our helpline at 1-800-532-7667 ext. 154 with any additional questions. Take care.
I am moving in Mid-May to Benson, North Carolina . I am looking for a neurologist that specializes in advanced ms, and a support group in that area. I have a clotting disorder from complications of dying 5 times being on aubagio…I have been on every ms medication except gilenya and tysarbi. My heart is also affected from lesions on my brain stem. I have a loop monitor in my heart and and port a Catholic in my rt arm. I have 13 major blood clots and am a DNR. Can you recommend ant physicians in my new area, and how to get a ramp and new scooter, or electric wheelchair. Thank you Dottie McVaugh
Thank you for reaching out to the MSAA. I have sent a private e-mail to you with a listing of resources. Please feel free to reach out to our Helpline in the future for additional information or resources. We can be reached by phone at 1-800-532-7667 ext. 154 or e-mail at MSquestions@mymsaa.org.
Are you still taking application for cooling vests or waist packs?
Hi Faith, thank you for reaching out with your question. We are still accepting applications for our Cooling Distribution Program, you can find the program’s information and application on our website here, https://mymsaa.org/msaa-help/cooling-products/. Please reach out should you have any additional questions. Thank you and take care. Angel, MSAA Client Services Specialist
Let Humor In: Thank you so much for your entry. It lifted my spirits and my heart too. This whole spring has been rough for both myself and husband. Your post reminded me that there is happiness in all of us, if we just open our minds and hearts. Thank you, Ms. Angel Blair????????????
Thank you so much for your kind words, Lynn! I’m glad the entry was helpful, and you’re absolutely right-happiness lives in us all if we can open ourselves to it. Thank you again for taking the time to reach out, take care.
August 2019, I was assaulted while shopping, on vacation in Maryland. I couldn’t defend myself. I filed criminal charges, however; the judge dismissed the case, claiming that I was being too sensitive. I expressed that I am a disabled person with MS. The Judge asked “What’s that? Who treats that?”. I walked away very upset, and it haunts me daily. I’d like to know if information can be sent to the Judge to educate him about MS. The Prosecutor joked about the disease. Please help.
Hi Cynthia, thank you for reaching out to the MSAA. I am very sorry for this situation and the challenges you experienced in trying to seek justice. I will be contacting you directly via email with more information and resources that can hopefully help. Take care of yourself, Angel, MSAA Client Services Specialist
I was diagnosed with MS 11 years ago. I am 81 years old and not on any medication. I have been very lucky so far that other than a slight balance problem and some tingling in my legs I do very well. Is it safe for me to take one of the Covid19 vaccines. I do not want to trigger something.
Hello Shirley, thank you for reaching out to the MSAA with your question regarding the COVID-19 vaccines. MS experts have provided general information and guidance on the vaccines for individuals living with MS, making the recommendation that most individuals with MS be vaccinated if able, https://ms-coalition.org/covid-19-mrna-vaccine-guidance-for-people-living-with-ms/. They say the vaccines are not likely to trigger an MS relapse or worsen symptoms. We encourage you to discuss receiving the vaccine with your doctor as well and hopefully they can offer additional feedback. If you have other questions we can try to assist with please email MSQuestions@mymsaa.org. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist
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