Health Rant (MS)

[Dayanara]

Not related to deals or shopping, but just need to rant about this.

I have multiple sclerosis. Was diagnosed abour 5 years ago. Started on a medication right away, found out about 2 years later and many relapses later that it had stopped working for me. Got switched to another medication, pain in the ass to administer because it is an infusion for an hour and need to leave work early, but worked and everything was going good.

My husband and I are now trying to get pregnant and I could not be on that medication any longer. Gone to another medication that is safer to us during pregnancy. Great right? Nope....my symptoms have been flaring up and I think I am going into another relapse. Not sure this new medication is working.

So now I have a decision to make, go back to the medication that worked and not get pregnant, or wait it out and hope to get pregnant really fast (women with MS while pregnant tend to be fine during pregnancy, body protects the child, strange eh?). But I am scared, it is getting worse and worse by the day.

My specialist is not much help, his suggestion is to not get pregnant at all.

[saveadollardiva]

First off I am sorry your having flare ups again and going through this. Personally, you have to do what is best for your health. You don't want to get to a point were you get worse and could seriously hurt yourself health wise. I know you want a baby and want to work towards that goal, but I would go back on the medication you were on before for now. I would have your specialist maybe send you to another specialist that maybe deals more with this issue your going through, wanting a baby and having MS and see what other medications you can take. I know this is a hard choice to make, but take your time and see what your options are. Just because one person says no doesn't mean there are not others that can help you reach your goal. Good luck and I wish you the best!

[hollyquaiscer]

I'm sorry to hear of your medical issues. I have a friend that also suffers from MS and some years ago, she was in the same predicament as you are. She tried a few different meds, but the only one that worked well for her was one she shouldn't take if she wanted to get pregnant. They looked into several options. First and foremost her health was the most import as if she wasn't healthy, she wouldn't be able to look after anyone. She stayed on the meds that worked for her.

The options they looked at, we using a surogate mom, not having a child at all, and adoption. After much research, they decided to go the surogate way. For them it worked out fabulous as their child is 100% from them, and it was her sister that carried the baby to term. I'm not sure what options you have available to you, but your health is of the utmost importance.

Please look after yourself and research the many options available to people today. I wish you all the luck in the world.

[SASHA22]

Hi, I too was diagnosed with relapsing-remitting MS over 12 years ago. I know what you're going through. Been in your position.
At that time, I also wanted to become pregnant. For as long as I can remember, all I wanted was to have a child. I was told by my doctor two things. One, if I go off the medication, my condition could worsen and; Two, that I stood a 70% chance of becoming wheelchair bound after giving birth. During pregnancy apparently the body really does protect the baby and from what I know from others, you feel fantastic, just like you did pre-diagnosis.
For myself, I made the decision, not to have children, but to put that energy into helping others.
Thankfully, I'm doing well and the medication has truly helped.
Hope everything works out well for you too. Good luck. Just be true to yourself.

[SavenRaven]

I'm sorry you are going through this. This is a very tough decision to make. Perhaps you can discuss it with another specialist? Let them know that you want to be aware of the options you have if you decide to have a baby. Maybe there is another medication you can try.

[Dayanara]

Thanks for the input. I appreciate it.

I have already been to a few specialists and am now seeing one of the best at the MS Clinic in Toronto. His recommendation is to just not do it, but said the choice is mine in the end. Others pretty much have told me the same thing, don't do it.

I am going to give this new medication a bit longer but scared I will end up doing more harm than good in the end.

We have looked into a few other options (surrogates/adoption) and we are not opposed to them just wish there was an easy way.

Just so confusing! Wish I could wake up tomorrow and there be a miracle cure. *sigh*

[torontogal12]

Oh hon I am so sorry you have to go through this. What a terrifying choice to make. You should check if there is a specialist who deals with MS and pregancy. My sister in law nearly died and had to have her colon removed 5 years ago. She is pregant right now and goes to a doctor who only deals with pregnant women with her exact condition and no one else. I bet there is a specialist who can help you. Everyone deserves a family of they want one. I hope this can help you. A female doctor may also be more sympathetic

[walkonby]

That is a huge decision, when it comes right down to it, you and DH are the only 2 who can make that call. So sorry for your situation. Best of luck.

[kashkoush]

i wish u the best of luck , and it's really not an easy dicision to make

[Judyhill]

Hi, I am so sorry you are having such problems.

I too, have MS. I am just wondering if there might be another medication you can try. For me, I have been relapse free (knock on wood) since early 2001. I was diagnosed in 1999 and in the first year and a half I had 5 relapses. I was then on Avonex. My neuro just told me to pick another as if I was suppose to know but I did read some good results about copaxone. I decided to pick that one even if it was a needle every day but it is only short. But since then I have not had another relapse.

I just wonder if you maybe give yourself a little time to try some of the different ones and maybe you will find one you can take while pregnant. I am not familiar with what is safe to take while pregnant and what is not.

My heart goes out to you because it is one of the scariest thing that ever happened to me. And even after all this time, I am still scared. I was diagnosed later in my life at age 39 so wanting a baby was not an issue for me.

I wish you all the best and will say a little prayer for you. Take care of yourself.

[Dayanara]

Judyhill - I started out on Rebif and then developed the antibodies for it, so it was no good for me (nor Avonex, Betaseron, etc because they are the same type of medication). I then went to Tysabri but I definately cannot be on that while trying to be or pregnant.

I am on Copaxone right now (daily needles) but I do not think it is working. It is the one MS medication that most doctors will say is okay to be on while pregnant. They will of course suggest not to be on anything, but it is the safest of them all.



We have decided to give it another few months and pray I do not get any worse than I am now, my next appointment is scheduled for October so unless it gets a lot worse I will just keep it for then. .

Just want this heat wave to be over, it too could be the cause for this flare up. Will never know though sadly.

Thanks for listening everyone/

[sueshe]

You are having to make a difficult and life changing decision,and under pressure to somehow make the right choice for your future. It's like trying to find the answers peering into a crystal ball. Please don't be hard on yourself. The right thing is to take care of your health,as others have said.I was diagnosed with ms 11 years ago,and remained in remission after that first episode. A diagnosis only took weeks,thanks to MRI and managed to keep med free for all that time. Until this spring. I am off work for a few weeks as I cope with new symptoms and meds. However,my children were teens when I was diagnosed,I don't know how I would manage to raise a family now that I'm in relapse. Are there other things you can cut out of your life that might contribute to not feeling well? How much do you work? Can you hire help in the home?anything that can alleviate stress might help your body to adjust to the current meds.You will make the right decision for you. You are in my prayers today.

[Dayanara]

Just an update...bad one sadly...

I have lost use of my right hand/arm (being right handed this really sucks). Developed a bit of drop foot as well. Went into the hospital for steroid treatment and sadly has not worked bringing it back....

The kicker? My specialist is on holidays until September...