Hi from a sad and frustrated MS mom
Posted: Sun Aug 20, 2006 9:33 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 .
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!]
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 .
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!]