Hi from a sad and frustrated MS mom

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Hi from a sad and frustrated MS mom

Postby OneCleverWoman » Sun Aug 20, 2006 10:33 pm

You all seem like such a helpful, friendly, well-informed group! My reluctantly diagnosed daughter and I have so many questions about alternative treatments! I'e been lurking here for a while now and I've finally worked up the courage to get my questions out there.

My now 24-year-old daughter was diagnosed (relapsing remitting) about a year ago now after a horrific bout of double vision that was initially misdiagnosed as stroke and then as a mass pressing on the optic nerve. Scary, but ultimately not as scary for us as what the correct dx turned out to be. Turns out now that I can probably date this lousy disease back to her mid-teens, when she had long-lasting spells of some superficial numbness and tingling (which I now believe were undiagnosed hypoesthesias and paresthesias, exacerbations of her MS). At any rate, and all guilt aside, she's now been diagnosed.

She's a newlywed and is anxious to have a baby, but she's only been on Rebif for about 3 months (she did not have health insurance when she was first diagnosed). The shots are agony for her--the only place they don't hurt is her tummy. Her hips are the most painful sites and her thighs, only slightly better; all sites show lumps and bruises for every injection she's done. She's rotating her sites properly and keeps a symptom diary; it was provided by the MS LifeLines visiting nurse :roll: .

She has only had a couple of exacerbations since she started the Rebif (Although apparently she hasn't been on it long enough for it to make a difference): Another spell of double vision for about a day when she was running a fever, and occasional stress-related tingling and paresthesias in her hands and feet. She took steroids only once, when she first started her injections; her BP soared and she developed some pretty severe (albeit harmless) palpitations, but the symptoms she was having at the time did diminish.

She has made an appointment with a psychologist we've consulted in the past to work on relaxation techniques, because she deals with a LOT of depression and insomnia. Melatonin, recommended by her neurologist, is not doing the trick. She's been on Zoloft and Lexapro in the past for situational depression, but she is really uncomfortable with the prospect of taking any antidepressant long-term.

So there we are.

Sarah and I have heard about The Gold Coast Cure, and I've recently read in a very reliable source (Reader's Digest) about the exciting potential of vitamin D. My fear (but not Sarah's) is that she'll quit using the injections and instead will try these (possibly ineffective) alternative treatments. So has anyone here had any experience with those plans? I can't see the harm in her taking vitamin D, and I'd like her to continue her meds for a year until her next MRI to gauge the efficacy of the Rebif, but I'm not the one injecting myself and I can't imagine she's going to last another 9 months. Does anyone have any words of encouragement I could pass along?

Unfortunately, because my daughter has had a tendency to depression all her life, her outlook about all of this is not very good. It seems like everyone she knows who knows someone with MS tells her horror stories of people in wheelchairs or who have "died from it." She's bombarded with that kind of crappy, uninformed pity almost daily, and I think between that and the excruciating injections she's about ready to throw in the towel and give up on any of the difficult treatments.

Of course, she just wants it to go away, and, as her mama, I just want to make it go away.

Whew...sorry about all the "poor us" stuff. I think we're still dealing with it as if she were just diagnosed; not an easy situation for any of us. Sarah really does have a terrific support system of family and close friends--she had the largest group at the local MS Walk this year and it was a great day for her.

Really, I'm just looking for anyone's impressions on vit D and the various diets that are out there (and for a little conversation about the ONLY FREAKING TOPIC THAT INTERESTS ME THESE DAYS! except for politics, but only a little bit).

Thanks,
OneCleverWoman
[A loving mom who promises to try NEVER to post an epic like this again!]
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Aaaack! I'm a dunce...

Postby OneCleverWoman » Sun Aug 20, 2006 11:05 pm

Okay...after just a little bit more investigational lurking, I discovered LOTS of info about vitamin D! Sorry I didn't prepare for the essay test! What a nightmare I'm going to have tonight!

Thanks, anyway, and I still hope to hear from you all. ;)

OCW
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Postby Loriyas » Mon Aug 21, 2006 6:17 am

Hi
This is all still very new to both you and your daughter and takes quite a bit of getting used to. That takes time and education, both on your part and on hers. She also needs to learn as much about this disease as she can. And as she does she will feel more and more empowered and less and less afraid. As the saying goes "Knowledge is power" and is no more true than in this case. The two of you will learn so much from this site and also from other reputable sites (just be careful because not all sites are reputable). I have gotten a lot of support from This Is MS in the past 4 years of my diagnosis and also from a site Acceleratedcure.com.

The people on this site find the time to do a ton of research on a variety of topics that help in so many ways. Take your time to review past subject thoroughly and also encourage your daughter to do the same so she can take control of her disease. I promise that will help her as much as anything else.

It seems that she is extremely lucky to have such a strong support system and that is a huge help in these early days. My hat goes off to you for being there for her.

The best of luck!
Lori
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Take heart

Postby Ronnie » Mon Aug 21, 2006 7:51 am

Dear OCW and your daughter:
I have had MS for years, was diagnosed in 1994 when Betaseron was first available.

I had several bouts of Optic Neuritis in 1990 and '91, so actually, they could have diagnosed me earlier.
Image
They waited until there was a disease modifying drug, I guess to molify the HMO), and have been on several different therapies:

I was on Betaseron for several years, can't even remember if it was five or four now, and always had injection site reactions.

Was on Copaxone for about a year until I was put on Novantrone for the full three years (that is all you are allowed).

Went on Rebif for a few months, until Tysabri was available.

Had two infusions of Tysabri in 1995, January and February, until it was pulled.

Have been doing Copaxone until this date, and now am fighting to get my HMO to allow my doctor to prescribe me Tysabri again.

Every time I have to do injections, I have injection site reactions. Every injectible has left me with concave areas on my legs, arms, belly, and hips. I look like the moonscape. I feel like I am covered with potholes. It is disheartening, yes, but my symptoms have been relieved, and my MRI's show that my disease is somewhat stable.

In fact, when my neurologist saw my MRI after the Novantrone therapy was over, she told me it looked similar to the MRI which I had taken three years BEFORE I began the Novantrone therapy; in other words, I had improved!

And Novantrone was only giving to me once every three months, as an in office infusion. Of course, it is chemotherapy, my hair thinned, and I felt sick as a dog for about ten days afterward.

And I can never do it again, since it is cardio-toxic.

Once you join the ranks of the MS'ers, once you have an incurable disease, you just have to roll with the punches, so to speak.

But, IF your daughter has good medical care, a good and informative neurologist, and takes care of her health in general, she should be proud of herself, and she should look at her personal journey and personal triumphs, because that is where she will find her inspiration and her strength.

It sounds to me as if you are both doing what you can. I certainly feel empathy with you, both as an ms patient and as a mother. My daughter is thirteen, and I can't imagine how I would be able to cope with it if she had MS as well! But she is stronger that I give her credit for, as she often has shown me.

My heart and love go out to you both,
Ronnie
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Postby OneCleverWoman » Mon Aug 21, 2006 8:10 am

Many thanks to both of you for your words of encouragement and also for sharing your experiences.

I'm not sure why this still feels so new to her or why she's having such a hard time with feeling helpless--letting go. I'm sure it's normal, though, and I'm hopeful that her visit with our trusted longtime occasional shrink will help her out (and, of course, she may be a candidate for antidepressant therapy).

Most days are pretty good, but some days are VERY bad. This unpredictable disease couldn't have picked a worse person to inflict--a control freak of a daughter and her control freak of a mother!

I'm encouraged, though, that the emotional lessons we'll learn on this journey (patience, calm, resourcefulness) will improve more than just our disease outlook.

Thanks again,
OCW
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Postby REDHAIRANDTEMPER » Tue Aug 22, 2006 8:59 am

welcome to the group..i am sure with all the great people on this site you guys will find lots out to help you along the way..they have helped me with giving me information and stuff like that...just let your daughter know that the best thing is to look to the future...for the baby she will have later..and for all the wonderful people who will be there to help her along the way..i understand the frutration you have i have 5 kids and one of mine is bi polar..so with working with him on his problems i tend to push anything i have wrong aside..hmmm maybe shouldnt have done that could have gotten a jump start on this thing...but the kids do come first....so just tell her to keep her head up and focus on the good stuff..and that means even the simplest things..for me i start in the morning looking how long it gets me out of bed....i look at it as heck it only took me 15 min to get out of bed...yippy..i know silly thing to look at and be happy but my kids taught me that..its the scout stuff..all be proud of your littlest accomplishments....lol..i could just picture people looking in my window in the morning when i am smiling about just getting out of bed...in time i am sure she will get her own pattern..she is every lucky to have a great mom...mine is in denial right now about me so it makes it hard....but will get through it....good luck and keep your heads up..

chris
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Postby Arron » Tue Aug 22, 2006 10:32 pm

Hi OCW, just wanted to welcome you to the site as well. You've found a great community that will be very happy to help you on your journey to knowledge. What a wonderful mother you are, as well, to be so caring and resourceful about your daughter's health.

What we say here is knowledge equals patient empowerment, which equals hope. MS is a disease that has a large army of researchers attacking it from all angles, and I am quite confident in saying that it will be quite difficult if not impossible to exhaust all options these days.

Welcome again, and post as many epics as you want! ;)
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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hi there

Postby jimmylegs » Wed Aug 30, 2006 5:00 pm

heya, sorry to hear your tale, clever! i seem to be saying this a lot lately, but: i don't usually weigh in right in the intro post, but since your question is so specific...

i am a full-on diet and vitamin d-er. but no prescription meds.

chris55 is another ms mom here who i think you might do well to private message. her daughter is using supplements, the story is very encouraging. the daughter also recently stopped taking her avonex because she is considering having a baby.

so what have you read about vitamin d so far. have u been searching the scads of posts on here about it? if not, to sum up your daughter may care to consider getting her serum vitamin d up to 150 nmol/l. the test is 25hydroxycholecalciferol (sometimes called 25hydroxyvitaminD). there is research that can help you figure out exactly how long it will take you to get from where her level is now, at whatever level of daily supplementation, up to 150nmol/l. in the end i did 10 days at 50,000IU per day cause i had so far to go. it worked! couldn't tell you if it fixed my immune system, time will have to tell.

another part of my problem is candida, and i have been pretty lazy about the dietary mods for that. i am about to get serious on it with the next grocery shop. there are other members (well okay maybe just beatms) who have treated themselves on the premise that their neuropathy is related to candida (there's a lot of good research out there supporting that idea as a possible causative situation in some cases), with reasonable-sounding success so far. also a number of folks here use antibiotics (which, i understand, is part of chris55's daughter's regimen also) with measurable success. the abx are targeted against a specific baddie, but they take acidophilus too to balance the abx, which could be coincidentally working against a candida problem too. anyway i'm hoping that the vitamin d will help my immune system stop the candida problem from returning, once i fight off the current overgrowth.

anyway welcome welcome, and i totally know what you mean about it being the only topic of interest. it took me six months of reading before cared about anything but ms!!
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Postby Wonderfulworld » Thu Aug 31, 2006 4:24 am

Hi OneCleverWoman
I was dx at 26 with bad relapse, paralysis and deafness, but I had had a whole load of relapses prior to that for about 7 years but they were passed off as depression/viruses/inner ear problems/whatever.

I am now 34, work fulltime, am married and have a good life. I got over that bad relapse quite well, just left with deafness in one ear. I do have occasional relapses but I mostly get over the symptoms.

My advice to you is to remember that if there was a definitive cure (like Vit D or a specific diet) we would all be on it :lol: However, that's not to say that various strategies don't help. I think gentle regular exercise is essential, even if it's the last thing you feel like doing. It helps depression, pain, balance, and it helps fortify the body against losing strength over time. I approach it like arming myself for battle :wink:

It took me a full five years to come to terms with having MS, I went through anger, denial, depression, loneliness, fighting it, and eventually I have a certain truce with it. I read everything I can about it, and I use both Copaxone and alternative medicine - acupuncture works well for me. I was on Rebif for 4 years but I never got rid of the flu-like side effects and like your daughter I found the injections quite painful. Copaxone is a breeze after Rebif, but the meds work differently for eveyone. Perhaps she could use "Emla" cream to numb the area before injecting?

Finally, the diet thing....I am a coeliac so I can't eat gluten but I did get myself tested for other food allergies. I am allergic to milk and eggs. I follow (not religiously, but I should!) the Best Bet Diet - I found it helped my symptoms signifacantly (bladder frequency, tiredness, spacticity in muscles - all lessened on diet). You can read about it here: http://www.msrc.co.uk/index.cfm?fuseact ... N=84266052
But I would advise your daughter to get proper ELISA food allergy tests if she's going to cut out food groups, and to see a nutritionist, especially if she's hoping to conceive. I went to a nutritionist last year and it was well worth the money. I take alpha-lipoic acid, evening primrose oil, b-complex, vitamin d, calcium and magnesium.
I am hoping to start a family very soon too.

Sending you and your daughter {{{hugs}}}....if she wants to PM me she can. She might also find this website good for support (you can make email pen pals with MS, and use forums and chatrooms) http://www.mswebpals.org/

Best wishes
WW
Last edited by Wonderfulworld on Thu Aug 31, 2006 5:48 am, edited 1 time in total.
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Postby Melody » Thu Aug 31, 2006 5:01 am

Things that helped us: My husband's vision went in one eye due to optic neuritis. Also in 2004 before we knew it was MS he was also being treated as a stroke victim. By the time we got our appointment with a neurologist in Jan or Feb of 2005 I had already come to the conclusion it was MS. Breaking it to hubby was hard. He was in denial so we took him to out local MS support group. The first meeting he looked at the guys and gals in chairs as leper's. By the next meeting their personalities began to shine through and soon the chairs disappeared. He was out of denial. I also took him to an allergist so I could remove all allergens as well as intolerances from his system. Also a test for gluten intolerance. We gave up[ smoking as well as caffeine and aspartame). All of his life he has suffered from restless leg it is now gone. All of his life he had eczema it is gone. All of his life he has seasonal allergies yet we have passed 3 periods that previously would have been torture and nothing happened. Twice now he has eaten a nut by accident(which used to cause anaphylactic shock in John) and nothing happened. John used to be heat sensitive and had spent years living like a bat in the summer but the last 2 years nothing affected him other than the days that got me when it was egg scorching hot. We have added cold water fish to our diet at least 3-5 times per week as well as the supplements listed below. Vitamin D3(natural source so important) John takes depending on the time of year between 2000iu -4000iu per day at Dr. O'Connor's advice. I believe you can control MS if you put in the energy need to know your own body. Guilt has no part in that as I like you also didn't see the signs till some damage was done. John by the way is no longer lame or nerves tingling but he does have optic neuritis as he can see shapes and colors but not fine details. Fish oils by the way help with depression as well as vitamin D3 as well as so much more.Welcome aboard. All my opinion by the way I'm not a Dr.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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