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Mamamazz 01-21-2013 09:15 AM

Off meds for 13 months. Symptoms returning?
Hi everyone. I'm new here and looking for advice. I was diagnosed almost 15 years ago when I was 11. I have always responded great to treatment with the exception of tysabri which nearly killed me. Most recently I was on gilenya, but stopped taking it on december 18, 2011 after getting a positive pregnancy test. I am now a first time mother to a beautiful 5mo old boy. After he was born in august I made the decision to remain off my meds to breast feed. But recently I began having symptoms again, or so I think. I have had migraines for over a week straight (probably closer to 2) and have had nausea for about 3 weeks (have taken multiple hpts, and no I'm not pregnant again). i have also noticed that its sometimes hard for me to say something, and I have to try several times. I know I should call my neurologist to at least be evaluated, but I'm scared. I want to continue breast feeding, and my husband and I are trying for another. I guess I'm just looking for advice, maybe support.

MSJayhawk 01-21-2013 09:31 AM

Re: Off meds for 13 months. Symptoms returning?
:wave: Welcome!!
I used to experience severe migraines long ago which my neuro told me were probably MS signs (I was 14), but this was ascertained forensically. Depending on my pain location, I treat mine with either dark chocolate or diet Dr. Pepper. For me, thanks to my niece's gift of Belgian dark chocolate, know that there is a difference in types of dark chocolate which work. That is, some brands require more consumption. The Belgian dark chocolate required just 2-3 blocks.

Pregnancy can suppress MS in women due to the production of estriol- a hormone produced during pregnancy. Researchers are working on meds using estriol which seem to be promising, but only for women.

With great admiration, I applaud your efforts to be med free to allow for breast feeding. You are giving your child a great beginning.

You might need to work with your doctor and neuro both to determine if your migraines are MS related or not. For me, I know based on specific pain locations and the fact that NSAIDs are useless for this pain. You can have MS as well as suffer migraines. Your doctor and neuro can help you in this area. Many times when a new problem or pain rises up to introduce itself, I will check with my neuro to know whether it is MS or not. She is very good about letting me know what to do. About 90% of the times I asked, it was MS related.

I wish I could tell you more other than see your doctors. Again, I applaud your sacrifice to do the best you can for your child. You are in my prayers. :angel:

Mamamazz 01-21-2013 09:42 AM

Re: Off meds for 13 months. Symptoms returning?
After I wrote this it became more real. I just got off the phone and made an appt for tomorrow afternoon. I am scared, but I knew it wouldn't last forever. I was hoping for 6 months, but if 5 is all I can get, then I can find comfort in knowing that I gave him the best I could for those 5 months.

MSJayhawk 01-21-2013 10:36 AM

Re: Off meds for 13 months. Symptoms returning?
You already know you have MS and you know that you have made a good start for your child;therefore, you need not feel scared. If you look back you will see how far you have come. Looking forward, you have a long way to go. Lay aside your fears because they can rob your blessings. :angel:

MSNik 01-21-2013 07:20 PM

Re: Off meds for 13 months. Symptoms returning?
H there and welcome to healthboards. Congratulations on the birth of your son. As you have heard and probably already know, pregnancy can bring on remission, whereas delivery can bring on relapse. Having given birth, is probably what is triggering these symptoms. The fact that you want to wait another month for breastfeeding, shouldnt be a problem, because even if your doctor wants you on a drug, its going to take 2-3 weeks to get it can put it off a month if you wanted to.

Its time to start thinking of long term effects for you in the near future. In order to be a good mom, you have to be healthy. Talk to your doctor about COpaxone the safest of the drugs for pregnancy...or ask him about LDN - its not approved in this country, but widely used for MS. Its also safe for pregnancy. I am on LDN myself and really like it. Its an oral drug, which has been proven to be beneficial and is currently being studied for MS approval.

I wish you the best....

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