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Telling my daughter
My daughter just learned she has MS..
Daughter just got diagnosed..

Daughter just got diagnosed..
Question: My daughter,39,just found that she has MS. Could you please give us some basic info, Thanks

Responses: There are many wonderful sites out there with excellent, reliable information about MS, the variable symptoms we can experience, different treatments for symptoms, the use of the "ABC" drugs, frequently used meds., common questions asked. Basically, MS is multiple or many scarred (or scleroses) areas in the brain or spinal cord. There are different kinds of MS, some people have one or two attacks (exacerbations) then recover either fully or with some weakness (remission), others have more exacerbations, some with recovery, others with lingering symptoms. Symptoms can differ in each individual but may include fatigue, not the kind you feel after a vigorous workout or a hard day at work, but a more profound, exhaustive fatigue that may not even be relieved by rest. Decrease in strength and endurance such as the load of laundry is too heavy to carry or the basket of towel you've just folded is enough activity for now. Some experience difficulty with there bladder as in difficulty in emptying it, or in retaining it. Muscle spasms which result in the feeling of stiffness after maintaining a specific position for varying lengths of time. Restless legs that feel jumpy, especially after laying down to sleep. Visual disturbance of dimmed, blurred or double vision, optic neuritis which is an inflammation of the optic nerve causing visual problems including pain. Treatment for the varying symptoms may include medications for fatigue, depression, spasms, ones to minimize irritation to the nerves. Each and every case of MS has it's own symptoms and it's own treatment. Having a competent physician that you can easily communicate with and trust is paramount. Support is available at many sites through support boards, discussion groups, on line chats. The majority of these also provide information and links to additional sites. Be wary of those that charge a membership fee. Some sites you may want to visit are, www.nmss.org , www.msmoms.com , www.erasems.com , www.mswatch.com , the support clubs at www.yahoo.com go to "clubs" medical conditions and click on MS, www.msonly.org . All of these sites will have links to additional sites with additional services. You can also do a web search by typing Multiple Sclerosis in a search engine. MS is a family disease, each member needing support, advice and education. Each learns and accepts this disease at their own pace. Each family member needs to be supportive to one another yet not overbearing or smothering. Visit some of the sites, attend the chats. I wish you all the best. Cindi

I was diagnosed with MS at the age of 44. The best advice I have is to research all the available information you can get your hands on. The Web has great basic info on Health sites on MS. Call your local National Multiple Sclerosis Society and they will send you info on MS and on programs in your area. Check out the bookstore on this site and spend time on sites like this that will offer positive support. The latest info available says that early treatment with one of the ABC ( Avonex, Betaseron, Copaxone) is important. Get a Neuro that you can communicate with and talk about the options. You are your own best advocate. Only you can make the choices that need to be made. Depending on symptoms there are many options and sometimes it takes a while to get those fine tuned. Stress and fatigue play major havoc on most of us with MS. Therefore learn early to try to keep those to a minimum (Easier said than done)! Listen to your body and keep you Dr and Neuro informed of any changes. They should be working as a team with you. Learn to ask for help ( I myself am not good at that at all) but when I do I find such great relief and people truly want to help. Most of all you are not alone. we are always here - Kookcow

My daughter just learned she has MS..
Our daughter Tina has just found out she has MS and it has hit in her brain. Her short term memory is almost gone and she has a lot of trouble walking and she gets very confused. She has just got back from Cleveland Clinic, Ohio. After 10 days. They treated her with 5 days of steroids and the 1 treatment of Cytoxan Therapy. She will go back for 5 more treatments 1 each MO. If this helps. If they don't see improvement after the third treatment then they will stop the treatment. Have any of you had this type of MS where it effects this part of your body? This is all so new to us. and we are still in shock. The first part of Aug she was fine. Holding down a full time job as a Mgr in a store and taking care of her two girls age 6 and 10. She is married and her husband is a truck driver. So we have been taking care of her most of the time when he is on the road. This is getting hard on us as we are 61 and 58. I am still trying to work full time and my husband is retired and taking care of her during the day. What do we do?

RESPONSES:
Hi Mary, I'm sorry to hear about what your daughter is going thru. I can't really say that I know anything about MS that just attacks your brain, although, lots of us have different problems such as concentrating and memory troubles. I've learned a few little tricks that help but I know how frustrating it is. Feel to email me if you want to talk. Terri

Wow, sure sounds like you all have been through the wringer, you and your husband, your daughter, her husband and the kids. It's so incredibly frustrating to want to be able to help, or understand what's going on and not really getting the answers you need. My MS did not come out of the blue like that, mine was more slow to develop. I did however have one incidence of what was called TransGlobal Amnesia. I got up one morning, totally clueless, about everything. I couldn't remember what time it was, if I worked or not, what day of the week it was. My hub took me straight to the ER. Nothing specific was ever found, and within a few days, I was back to normal. However, I was wondering if any of the docs suggested that Tina go through rehab. It usually lasts from 3 to 6 weeks, mostly covered by insurance. There is a course, usually pretty well designed for those of us with MS, that helps build up strength, improve memory, works on all of the ADL (activities of daily living) skills. It is an inpatient type of program, so she can devote her full attention to it, while at the same time giving you both a break. She may still be somewhat weak coming out of it, requiring some help at home, but hopefully rehab would be beneficial for her. I'm so sorry to hear of all the difficulties you're having right now. I hope you've contacted the NMSS to see what assistance and information they can provide. I am personally familiar with the Akron office and know they all work hard to help everyone as much as they can. Good luck with Tina, I hope her MS gets into remission soon. Cindi

Mary, I'm sure this is an emotional time for you and your family, but it sounds like your daughter has already taken a major positive step in seeking out aggressive medical expertise who are willing to fight her disease with her in such a proactive manner. Its a HUGE leap for a doctor to go straight to Cytoxan treatments which tells me he's wanting to do EVERYTHING possible to keep her on her feet. That's great!

I know this from experience because its the method of treatment my doctor established with me when it became clear early on that steroids along did nothing for me. I began steroid/Cytoxan treatments and can tell you honestly that it broke the cycle of exacerbations and I'm still walking and talking and living a full life chasing after two very active boys. You are on the right track so stay positive.

My only other suggestion is to talk with the doctor about starting Tina on one of the ABC drugs (Avonex, Betaseron or Copaxone), developed to slow the progression of the disease. If your doctor know about Cytoxan he will definitely be educated about the ABC drugs. Cleveland Clinic is a cutting edge medical facility with some of the most renowned researchers.

Stay positive, stay focused on the good things in life and continue to give your daughter the support she needs for now. Kindest thoughts, Deb

Telling my daughter.
Question: I'd like advice on how to talk to my 6 year old daughter about my MS. Any particular books recommended? I'm a single mum diagnosed 8 years ago with relapsing -remitting. I also have diabetes. She is adopted from Vietnam and her father and I are now divorced. Life is challenging for us both. I've come across a few sites and articles geared towards teens with parents with MS but I need something for a 6 year old. I've just come through a fairly scary exacerbation and, although she is my cheerleader, I can see the fear and insecurity there. How can I make her feel secure when I get so terrified myself?

RESPONSES:

STACY: Check with your local chapter of the MS Society, they have wonderful programs, books and coloring books geared for every age. I have a 4year old and a 7 year old and I use their resources constantly.

MARY: Honey, sounds like you have really been through the ringer. Call your local NMSS society, they have all kinds of things for every age. I know they have newly Dx classes, & I have heard that they have different types of counseling too. If you live in or near a large city I know there is plenty of help. I will be praying for both of you. May God keep & bless both of you.

PAT: Hi, Join some local chapters of the MS society or if they are too far away from you, call them and ask to speak to someone concerning your problem. What has helped me thru some bleak experiences is the love and support I get from my husband's family? Also the love of my new granddaughter, Jessie. I have put my total and never-ending faith in the hands of the Creator. He alone knows.

DEB: Kids are more resilient than we give them credit for. The fear you think you see in her may actually be you projecting your own fears and she's picking up on it. At six years of age, your daughter will understand the difference between an illness and something life threatening. Sit down with her and ask her if she has any questions then try and keep your answers as simple as possible. There's a great book entitled "Multiple Sclerosis; A guide for Families" by Rosalind Kalb, PhD She addresses how to handle MS issues with the family and children. You might want to check it out. The NMSS also has wonderful pamphlets on discussing MS with your children and some local chapters offer a hands on program. Best of luck to you!

LORNA: The ladies have mentioned some great resources but I would also like to direct you to some resources which you can find right here on MS MOMS.com the bookstore has a few books on parenting with chronic illness, our MS Living page has tips on telling kids and in response to a question very similar to yours in the past, in my first book, Coffee in the Cereal, I talk about telling my eldest son Stephan about MS. I also continue on about telling children in my second book Phone in the Fridge. The original writing was printed on Mother's Day in the Rest Ministries Christian newsletter He Will Give Your Rest for people with chronic illness. It was a big honor for me , that they chose this article and I hope it may help you as well.