hello!

goofygirl · Newbie Joined: Oct 10, 2007 Posts: 4

Hi! Another new one. Short story.... Diagnosed 4.5 years ago. RRMS. I am 44 and they think it started when I was about 23/24. Main issues tingling/numbness/pins/needles and major spacitity from bra line down.

I used rebif for first 3 months but felt it was very wrong for me. I found initial trial with estriol and prayed about it for several weeks and decided it was the right thing for me much to my neuro's advice it was too risky (he had never heard of the trial). I found a website in UK and purchase it(Ovestin) from them. I have been taking 8 mg (amount used in study) every day for 4 years. I have had only 2 relapses in 4 years. There has been no decline in any way. Laughing

I have all the same symptoms but nothing truly new.

I was jumping for joy when the last trial results were made public and the next trial has started! I pray for an oral med that everyone can take.

Thank you for this website. There can never been too much support!

LisaBee · Posted: Wed Oct 10, 2007 7:40 pm Post subject:

Hi goofygirl,

Welcome to the site. It is very interesting you have done well on Ovestin.

I was diagnosed 3.5 years ago and am close in age to you. Interesting, because the only prescription med I take is an oral contraceptive for something unrelated to MS - bad menstrual problems, I'll spare everybody the gory details - that is something that has been a problem for me all my life (well, the first few years exempted). The OC doesn't eliminate my problems, but it does help a lot.

No relapses since my diagnosis, so the OC might be part of that, and I may not be giving it credit.

The stuff you take, you indicate you take it every day. I cycle off one week a month for the obligatory event and notice I feel bad on the off week and almost immediately better when I start it up again.

I am curious how your med works, cycle wise. I realize I'm jumping right to the really personal and you can PM me if you like.

Welcome to the site! Look forward to hearing from you -

Lisa

goofygirl · Newbie Joined: Oct 10, 2007 Posts: 4

Hi Lisa... my name is Lisa also by the way! I had to have a hysterectomy when I was 24 due to endometriosis. They didn't know what else to do back then but take the uterus out and when they told me I had a better than 70% chance of ovarian cancer if we left the ovaries given I was so young.....I said take them out too! I was on premarin for a long time and took several months off here and there.

I don't know if you are aware of the study. The estriol study showed a 75-82% reduction in lesion activity. It has been used in other countries as their hormone due to it's SOOOOOO much better than anything here in the states. It's record for any of the cancer issues like the premarin we use here is significantly much smaller if at all. I still can't find the answer as to why women weren't given it here in the states. It takes care of the usual menopause symptoms.

So, to answer your question... bc is not an issue for me. Getting personal...don't worry about it. How else can we really talk about things! Have you been on www.healthboards yet? It's another good board.

REDHAIRANDTEMPER · Posted: Thu Oct 11, 2007 7:52 am Post subject:

welcome to the group,
there are wonderful people here with a world of information.....and we all have senses of humor.....always good to talk to them cause it always makes me feel better.....

chris
_________________
waiting for answers

LisaBee · Posted: Thu Oct 11, 2007 7:56 am Post subject:

Thanks for the reply - I need to look into this more!

I often wonder if conditions related to hormonal imbalances make some people more susceptible to MS. You had your problems at a young age, and I was never "right", cycle-wise. I don't know if there has been any epidemiology studies on this particular link, although I think there have been some studies where different hormone levels were measured in MS patients.

I'm still premenopausal (there has been plenty of times I WISHED I had a hysterectomy, given my history) though I get closer to the finish line every year. I have fibroids, but the Pill seems to help with those, at least symptom-wise.

I don't know how the estriol is related to the forms that are in the oral contraceptive that I take. I see ads for the newer generatation OCs that provide a continual dosage, essentially shutting the cycling down, and thought I would look into them as an alternative to what I am taking now. I need to get with an informed, open-minded doc.

Shayk is one of the posters on this site that is particularly knowledgeable about all the hormonal related trials and research, and there are some other frequent posters on the topic, too. A lot of people posting have particular areas of MS research they follow closely, and they will often post if a new thread on their focus is started in general discussion or elsewhere. Feel free to start a thread or pick up on a related one!

Lisa