MS Support Thread - Page 3

[oikophile]

Hello all,

I was really glad to see this thread. I am going in tomorrow for my third MRI in two years--that's how long I have had "possible MS." I had one episode seven years ago, when I was in my early twenties--lingering numbness like my leg and foot were asleep, but for days on end. I didn't think much of it then, and an MRI didn't find anything abnormal (although I didn't get to have the MRI done until after the symptoms had subsided). Since then, I have had more minor parasthesia occasionally. Most recently, I started experiencing Lhermitte's sign. The neuro wants a total brain/cervical/thoracic spine MRI, and I'm hoping that will help some with a diagnosis. I have declined the lumbar puncture in the past, and I still hope I don't have to do it. Last time (two years ago) there were lesions on the brain MRI but none on the spine, and my blood tests were normal.

My best friend has MS and she thinks my neuro has been too conservative and I should have been on meds this whole time to prevent the disease from getting worse. I am a little skeptical of aggressive treatment, but I do feel impatient to know what is going on and what I should be doing about it.

I am in my late twenties now and I am curious to know what the implications would be if I wanted to have a biological child (I currently have one stepchild). I am not dead-set on it (I have always been drawn toward adopting regardless of my own physical condition) but it is an experience I think I'd like to have, all other things being equal. Did anyone here have serious relapses post-pregnancy? I especially worry about fatigue, because I have some bad fatigue already and I'm not even a regular parent.

Thanks for reading and sharing your experiences.

[Mom2M]

Hi,
I'm so sorry to hear you are having problems. You have multiple brain lesions? If so, I think your neuro is too conservative also! Spinal lesions are much harder to see even on MRI's but brain lesions definitely fit the criteria for a dx. Latest thought is that the LP is really not necessary for a dx if you have lesions and clinical signs.

As far as pregnancy and MS, I wish I could just keep having babies! Seriously, I have wonderful remissions during pregnancy and for about a year or so afterward.
I have heard of relapses after delivery, however, I believe that most of those occur when the patient is not breastfeeding. My dr. thinks that the breastfeeding hormones keep me in remission.
There are trials going on right now for taking hormone pills along with copaxone and if I relapse I am going to ask for the estriol.

Fletchersmama, I'm so sorry to hear about your DH. I've had lots of IV steroid treatments and although they can work wonders, they are tough on your body long term.
After 2 years on SSDI, he will be qualified for Medicare and that will cover these costs much better. You'll get the info in the mail when he is eligible.

As far as doing the MRI's now, either he could ask the dr to wait till he gets Medicare or ask for help through the NMSS. They have a program where they help patients with MS pay for MRI's.

I do NOT use interferon drugs but I do take a disease modifying drug called copaxone. It doesn't have the side effects like the interferons and I have had very good results from it.

[oikophile]

Deb, thanks for your response and for sharing how positive your pregnancy experiences have been for your MS! From what I understand, my neuro wants to totally rule out other demyelinating diseases. I actually dropped the ball on getting my last follow-up MRI in a timely manner, so it's taken longer than it should have. So we are rechecking blood tests as well. I think with the new clinical symptoms, though, MS is looking more and more probable.

I will post back here once I've had my next follow-up. I was hoping to find an MS thread on MDC, because I know people here are more likely to have perspectives on holistic treatment and self-care as well as the usual medical treatments for MS. Thanks again.