This Is MS Multiple Sclerosis Knowledge & Support Community

I am writing this note because 20/20 is hindsight, and if what my experience is teachng me might help someone - I would be grateful.

I was diagnosed n 2005. My husband and I had two healty children. My Ms came on quickly and strong, but settled down and was responding well enough to copaxone when we decided to have our third child. I stopped all meds in mid 2007, and we concieved our baby quickly. Our pregnancy was perfect. I was so strong. All of my symptoms resolved themselves. I lived for 18 months, a life before this crazy awful journey with MS began. The time including the pregnancy and the entire time that I was nursing my baby I was completly symptom free. After he was born, and while I was nursing, I was being treated with monthly infusions of IVIG. However, I was sure that it was just a precaution and somehow I was in a deep remission. When my son started to self-ween himself at 9 months, I just let him. I did not immediatly begin any other therapy.

Within two weeks of not producing milk I had my first major flair. That was in October 2008. Since then there have been at least two more, which did not responding to steroids. I am grateful that I came home from the hospital before Christmas to be with my three beautiful and healthy children. We did plasma exchange that seems to have been somewhat helpful - but not without complications.

I guess I am sharing this story because I wish that I would have had the foresight to have kept my own horemone levels up, by expressing milk, while I began therapy sooner. Something, anything to have prevented, or minimised the current situation that I am in now.

Warmly,
Kathy

Kathy,
Welcome to the boards and thanks for sharing your recent experiences. ( I also appreciated your mention of your gadolinium experience in the other thread. ouch) Sorry for your difficult time now.
Alot of women are discussing the importance of hormone levels on the regimen thread. Perhaps you might be able to get started on a hormone replacement program?
http://www.thisisms.com/ftopict-4551.html

wishing you a healthy new year-
AC

Kathy

Welcome--I too am so sorry you're having such a go of what MS has to offer at the moment.

If you're at all interested in considering the hormone angle as a way to help manage symptoms, I'd also highly recommend the book, "The MS Solution: How I Solved the Puzzle of My Multiple Sclerosis", by Kathryn R. Simpson--brought to my attention by Cojack and Cheer.

Among other things, the author recommends that people with MS, men and women:

Evaluate endocrine function and replace any hormones that are low or out of balance.

I heartily agree with her on that and guys, there's a whole chapter dedicated to "Sex Hormones and MS for Men". Worth the read for everyone I think.

Best to you

Sharon

I'm sure that Shayk will forgive me for appending this bit of information: Insulin is also a hormone. I think its level needs to be checked as well--fasting serum insulin test or post prandial (after eating) serum insulin test. These tests should not be confused with "glucose" testing--insulin and glucose are two different substances.

And, by the way, (in respect to the "vascular" line of thought) insulin promotes blood clotting.

LC

No need to forgive you for bringing up the need to evaluate insulin and glucose levels.

In fact, in her book, Ms. Simpson makes several references to insulin and insulin insensitivity (from p. 151).

It is thought that insulin resistance may exacerbate cognitive problems and inflammatory responses in MS. If your levels are elevated, work with your doctor to follow a diet designed to lower insulin levels (specifically, cut out simple carbs).

Research suggests that insulin is vital to normal brain functioning and that insulin problems are implicated in memory loss and neurodegenerative disorders....

One of the things I really appreciate about the book is her holistic and integrated approach.

As an example re:vitamins and minerals (heads up JL), there's this (from page 181):

Take a good quality vitamin and mineral supplement daily. Get levels of key vitamins and minerals measured and supplement any that are low. Adequate and balanced magnesium, calcium, and zinc are critical to symptom resolution in MS.

She also plays particular attention to thyroid problems, which hasn't had much discussion here.
Association of MS with thyroid disorders

A controlled prospective study was conducted to determine whether thyroid disorders are present with increased frequency in patients with MS. We found that thyroid disorders were at least three times more common in women with MS than in female controls.

Thyroid hormone has actually been under development for remyelination for some time, here's some recent research:

Recovery from Chronic Demyelination by Thyroid Hormone Therapy: Myelinogenesis Induction and Assessment by Diffusion Tensor Magnetic Resonance Imaging

Anyway, I think it's a good read with lots of different perspectives--not just the traditional "sex hormones" that I've tended to focus on.

Happy New Year all...

Sharon

;) thx shayk
the zinc is good for your sex hormones too pardon me while i go take some LOL

Thank you all for your thoughtful comments. This community is made up of such caring and wonderful people. Seems that we are not alone after all. Thanks - I will follow up on each suggestion !