Mother of the Year comes out of the MS closet-

[mhillgrigs]

My name is Michelle, I am the Mother of four vivacious daughters and we live in the Northeast.

My 2nd daughter, 19 year old, was diagnosed with MS 1.5 weeks ago.

Four weeks prior to the diagnosis, she experienced double vision for a week, Mother of the Year told her it was probably her sinuses. (She told me for days, I can't believe my sinuses would made me see double) Yup, your sinuses honey. The symptoms subsided after several days of antibiotics.

A week and a half ago she came to me and told me that something was wrong and that she thought she was going to have a stroke. I chuckled and told her that you don't "get ready for a stroke" and asked what was wrong. She said her right side was weak and "tingly" and that she couldn't really feel her last two fingers and her foot felt like it was stepping on nails when she walked. Again, I put on my Mother of the Year hat and told her she was fine, likely a pinched nerve from working out and suggested she take a hot bath (great for MS), ibuprofen and get some sleep.

The next day she wasn't able to grip a pen at work and then fell down the stairs when her right leg went out. She was sent to the ER, they called and suggested a possible stroke. (Imagine how I felt, I didn't wear my MOTY hat into the ER, left it in the car.)

When I arrived in the ER they said her labs were all normal but they noted "something on her right frontal lobe in the CT scan." They admitted her and performed the MRI. I reassured myself it was nothing. If her labs were normal, there was no malignancy, likely an aneurysm, benign tumor, calcification or bad CT scan. We'd be home by dinner and if not, all were treatable.

Imagine my surprise when they found "many lesions" on the MRI.

So, here we are a week and a half later.

I just "came out" on facebook yesterday, thanking those who quietly reached out through messages and telling my facebook world about her diagnosis. I've begun sharing my daughters dx with others. I'm not quite sure how I feel about the responses, I think I've had it with hearing, "I'm sorry." I mean, I get it. But please don't be sorry or at least don't WRITE it on my facebook page where my daughter can read it! Sorry, really?

We are thankful Don't get me wrong, I'm not happy, I'm not wearing the wristband yet, I haven't added the "proud mom of daughter living with MS" to my signature but short of a few crying fits in the shower and car when I'm alone, I am so very, very thankful.

Based on everything I've read in a week, MS is a very manageable disease. The advances made in the past 20 years have made MS a chronic disease which can be managed while LIVING LIFE to the fullest! We all have aches and pains, without MS at the end of our name and truly, millions of families would trade places with us in a second. For this, I am so very thankful to sit here and read the MSWorld page vs sites dealing with end stage care, hospice, brain cancer, ALS or even Lupus. MS is a gift when compared to the other options out there...

My daughter completed the Solumedrol treatment, a six hour trial of Gilenya and is now on the daily. Just today, her limp seems a little better and she says that feeling is coming back to her pinky finger, praise the Lord. No matter what lies ahead, we are ready. We will be her armor and we will fight the fight with her!

So, I am thankful for this site and I look forward to expanding my world as I learn more about MS and fellow loved ones LIVING with MS!

I thank you for the opportunity to share this journey with you!

Michelle AKA "Mother of The Year!"

[misslux]

Hi and welcome.

I really am sorry to hear of your daughter's diagnosis (anyone's really). I'm sure you are tired of hearing "I'm sorry" but I think no acknowledgement is worse, at least for me.

How does your daughter feel that you came out semi-publicly with her diagnosis?

[mhillgrigs]

Misslux,

Thank you for your "sorry" your words are appreciated.

My daughter is good with my public acknowledgement, acceptance really. It was only with her blessing and mostly because a) I couldn't keep up with the PM messages, texts and phone calls (blessings) and b) because she was doing well, wanted to let everyone know right away....and c) It's nothing to be ashamed of, in fact we are building a community of people who know others living with the disease.

We do have a lot of questions, most of which I know can't be answered with anything other than time....

I'm really hoping to gain a better understanding of what to expect, could she go decades with no other flare ups? Is Gilenya working for others? She's only 19, they say the younger you are diagnosed the better, haven't quite figured out why yet....

Thanks for asking, how are you?

[onlyairfare]

Michelle, I think there are threads on this topic, but in answer to your question "Could she go decades without other flare ups?" - yes, some MSers do go many years between flares. I don't know about "decades."

I've had MS since 1975 when I was in my 20's, so it's almost 40 years. I have been very lucky, but I have almost no visible disability and I still work full-time in the career for which I was in grad school when I first had symptoms (optic neuritis was my first warning).

I began Copaxone in 2002 but stopped it in 2008 when the co-pay became too expensive. Last year I began Gilenya (better insurance, and no co-pay at all thanks to the Novartis aid program) and I have had no problems with the medication, and no relapses.

I was not having many relapses anyway, and my neurologist is of the opinion that my MS has probably "burned out." That is, he thinks my immune system is wearing down and is less likely to act up with another flare. But you never know - which is why I am on Gilenya.

My best wishes for you and your daughter. This is a great place to come for information and support.

[misslux]

I'm doing okay, thanks for asking.

I think it's great that your daughter is open to disclosing! I still do not disclose unless I have to, but my circumstances are a little different. I have a visible disability and it is better for me professionally to tell people I have a bum knee than to tell them I have MS.

Everyone's different when it comes to MS. Some go years without flares and some are in constant flares. I have primary progressive (PPMS) so I don't have flares, just a downward progression and there is currently no treatment for PPMS, just symptom management.

Anyway, this is a great place to be. Glad to have you aboard.

[Alicious]

No need to beat yourself up. All parents make mistakes of one kind or another, and it's not like MS at age 19 was on anyone's radar. You did the best you could to support your girl with her health issues, and now that you know it's MS, I'm sure you will keep on supporting her through it. Done is done, and what's important is helping her come to terms with her diagnosis, and letting her explore her feelings through her own lens without being worried about how anyone else feels about it.

Kids often want to protect their parents, so my advice would be to be cautious about your public presentation (I know you have her consent to talk about it, and making sure of that is wonderful parenting right there). Don't get me wrong, you have every right to express yourself and certainly need to, but it's important to let her explore these feelings without worrying about how you are handling it. You're clearly very devoted to her, and I'm sure you have her best interests at heart. So, hang in there. There is life after MS, and it's a good life, I promise.

I also wanted to add that hot baths are fine for MS. They can make symptoms increase while the body temperature is elevated (google "pseudoexacerbation"), but taking the hot bath has no effect whatsoever on the disease, and can feel very nice indeed.

[JerryD]

I think your daughter has a good support system in her parents. I am sorry to hear the news. But you are in the right place. Good luck

[22cyclist]

mhillgrigs: You may also want to have your daughter to join and ask questions of her own. There is a young adults section on here that will fit her well. Also she can just use the general q&a section, and the symptoms sections to ask questions or answer questions. It is helpful to know you are not alone in this disease and that your symptoms are similar to others.

RRMS may not have an exacerbation for years, but that is not the rule, that is the exception. Most have an exacerbation a year if not more, to a year and one half depending on what medication you are taking. I hope that she experiences less, as I hope everyone does. My biggest suggestion to you is to go out and buy a book about MS. MS for dummies is a pretty good book, that breaks down what MS is about, the symptoms, signs, fatigue, etc. This will help both you and she both for now and in the future when she needs more help. Hopefully there will be more and better drugs in her lifetime that will benefit her in terms of remyelination. They are in the works now.

Just learn everything you can about the disease. My mom never did, and completely misunderstands the disease. It is not helpful. She is a big cheerleader, but doesn't get the disease. That needs to happen.

Take care of yourself too.
Lisa
Moderation Team

[britsmom66]

Hi

My daughter had all these symptoms and more almost all of her life. Most we attributed to a near fatal accident she had at age 11. She started having severe muscle spasms in her neck, head and upper back a few years ago and mri's showed nothing at the time. She became pregnant at age 21 and was dxd with her very first mri while pregnant...that's how severe the mri was and he said she had obviously had MS for years.

The neurologist is a specialist in that field and was honestly looking for seizures, NOT MS. She had the solumedrol infusion done right away. No one in my family had ever been dxd with MS or any other autoimmune disease except me. I have mixed connective tissue disease of undefined origin with Fibromyalgia and CFS, plus a few other little things.

My daughter is now 23 (24 in November) and has also just been dxd with Lupus. All those years I was frustrated with the Dr's because most thought she was seeking pain meds or attention. She even told me she thought she had MS, but I brushed it off saying that she had all the symptoms I have had, including reactions and allergies to the same meds as I, and most likely she had my diseases.

Well, now I have been having weird symptoms since I was 16 that have gotten worse since last summer. Currently I have neuropathy in my left arm and now tingling and no feeling and dropping things and I have fallen quite a bit in the past. My neurologist thinks I was misdiagnosed all these years and is testing me for MS.

My first MRI was last year with no signs of lesions, but my spinal cord was never tested and I haven't had the LP. I do have an elevated ANA with a speckled pattern and always had low vitamin D (19) as well as chronic hypokalemia. My T4 is slightly elevated as well and I have put on a great deal of weight since February of 2012.

Not sure how to interpret all this as I have always known something was wrong, but Dr's couldn't tell exactly what it was. I've had my spinal fluid to drain out twice...once from a myelogram and once after my 3rd ear surgery it drained into my ear and I went totally deaf until my final ear surgery, where they repaired it. Not sure if this somehow exacerbated things?

Anyways, I do understand all you are going through, the need for support and the worry this has and will cause for you concerning your daughter. My daughter is raising a very rambunctious 2 year old son as well as attending school to become a specialist on MS in the RN field as well as working.

Your daughter can still lead a very productive life. Just keep giving her support and try to gain knowledge to help her in this trying time. I still haven't told my daughter I may also have it, but she has suspected since her dx. I wish you both the best!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Cat Mom]

In a way, even though you used the term MOTY in a kind of joking way towards you, you really are A MOTY by asking questions/opinions here to assist your family in dealing with it. You are obviously an extremely supportive Mom.

I hope you feel free to ask questions, even vent if you need to. I hope your daughter starts a treatment that works/helps, either conventional meds or a holistic approach. You'll be ok, just go one day at a time, and don't forget to treat yourself every now and then!

Jen