A desperate mother searching for hope!

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

A desperate mother searching for hope!

Postby Lap » Sat Jul 31, 2004 3:14 am

My 36 year old daughter was diagnosed with MS 2.5 years ago and now has secondary progressive. her MS is "very aggressive and very bad" according to her neurologist, and they have 'thrown everything they have at it with no avail". She has serious vision problems that do not go away and can barely walk or use her hands. She has two small childen and I am in absolute despair about what is happening to her.

She has tried beta-interferon (Rebif) with no positive results and has just had her third dose of Mitoxantrone (one week ago) and is to have a dose every three months for the next 18 months but so far there has been no improvement in her condition. Can anyone out there give me any hope???
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Postby mscaregiver » Sat Jul 31, 2004 7:35 am

Hi Lap, Perhaps seeing a different doctor would be a good idea, also read as much as possible about all treatments for MS , a second opinion and research can help you and her maybe find many different approaches to waging your battle against this terrible disease..

best of luck and you will find many here willing to talk to you and do what they can to help..

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Postby Arron » Sat Jul 31, 2004 12:01 pm

Hello Lap,

The suggestions above are excellent. If you're looking for alternatives to try in this situation, there are many-- do not despair that you have exhausted all your options. There is hope around the corner.

In terms of running out of standard treatment options, I would recommend you read up on Low Dose Naltrexone, Aimspro (Goat Serum), and antibiotics (minocycline). While none of these are yet approved as treatments for MS, if you are determined enough, it would be possible to procure them.

In the meanwhile, I would suggest you take her to another MS Specialist and at least confirm that the course of treatment she is getting right now is indeed the best possible.

Please provide us updates as they become available, we are all concerned...
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Postby Lap » Sat Jul 31, 2004 3:18 pm

Thank you for your kind messages. My daughter has seen two neurologists both considered experts in the field of MS. Does aynone know how long it takes for Mitoxantrone to work and the kinds of positive results one might expect? Will her vision improve at all? She has done fairly well in the past with steroids but has has had so many treatments and the effcects do not last very long. She has also had two pregnancies in the 2.5 years since diagnosis and was better during the pregnancies but terrible afterwars (her youngest child is now 5 months and her oldest 20 months).

I would be so grateful for any information people might give me. And I will certainly follow up on the suggestions Philip and Arron gave me.
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Postby butterfly » Mon Aug 30, 2004 8:51 pm

Lap, I no so little about this disease compared to many of the other immensely knowledgable people in this forum. However, you mentioned she improved during her pregnancies -- I don't know how much, but I wonder if there is anyone (MD) who might explore the hormone link with her. You might investigate the information on estriol trials (there is a related forum at this site).

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pregnacy causes remission

Postby perfectkittysmom » Sat Sep 18, 2004 8:19 pm

Hi Lap. For what it's worth, pregnancy often causes women's symptoms to go into remission, and ordinarily in the months following the baby's birth, the mother has a serious relapse. It is believed to be related to the role that pregnancy has in supressing a mother's immune system (so she won't reject the baby and miscarry) and there are a number of articles out there documenting this. Often IV steroids are given for a short time after the birth of a child to shortcut the exacerbation.
As for the vision, without a lot more info. I can't offer you much. If the vision problems are due to a lesion in the brain that transmits vision, vision may or may not improve after the relapse. Many other vision problems resolve at least in part once relapses finish.
I hope your daughter is seeing a specialist at a teaching hospital near you - I found that I know more about MS than most of our local "MS specialists" and that the best care I found was from local teaching hospital. What part of the country do you live in? If you would like, I can locate a teaching hosptial w/ MS specialists in it near you.
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