Reposting: Secondary Progressive MS, What Your Doctor Won't Tell You

Diane wrote such a good post at A Stellarlife that I had to re-post it and share!

http://dj-astellarlife.blogspot.com/2010/04/secondary-progressive-ms-what-your.html

Our Trip to Homosassa Springs Florida

Mini Flare?

The warning signs are here...I'm having what I like to call a Mini Flare. Flare Up the past 2 weeks of previous symptoms. With...a new and unusual symptom...Calf and Feet swelling. Can swelling be an MS Symptom? Other than when your on steriods? My legs were so swollen my doctor had me go for a leg ultrasound for a DVT. Which was negative. So...low dose steroids...for now...the problem with Roids..as many of you know is that they have horrible side affects.

I forgot how many I get, overheated, insomnia, spasticity gets dramatically worse, blood pressure goes through the roof, headaches, upset stomach etc... The roids actually make me feel worse I think. But, is it worth it in the long run. One never knows.

It's been almost 2 years since my last flare (July 2008) and that was a bad one. I don't want to go there again. I have not been the most healthy since going back to work FT last July and even though I am flourishing professionally, I am working long hours, living with the in-laws currently (until next month) and not eating right or exercising. I'm done with all of that...I honestly believe the healthier lives we as MSers lead the better our disease progression and outcome.

This week I will begin to watch my calories, fat and carbs. After my legs improve from this Mini Flare, I hope to move more than I have been and loose enough weight and get strong enough to start getting healthy again. Before each Major MS event in my life I was unhealthy. I'm there again and I have to take action immediately. Does anyone else notice a link between how healthy they eat and exercise and how their MS Flares up?

Scientists Find There May Be 2 Forms of MS

See the CNN Article HERE


What do you think?

Happy Spring Everyone!

Life's a Gamble

Hello Readers! Long time no contact! :-)

Well it's been 2 month since I last posted and with good reason. See the chart of my life's events below.

Sept 30th - Had to move in with in-laws as husband was out of work since Mid-July.

Oct/Nov - Working hard at my contract job so as not to loose it because it is our only income.

November - I am hired on Full Time and get Health Benefits, as we had been without them for about 18months.

Early December - Matt starts going to his Endocrinologist (Diabetes) and getting his blood sugar under better control.

Dec - Mid-Dec - Matt gets a job! Not a great job, but a job.

January - First month of Matt's job he is traveling and traveling for his job and sometimes coming home after working 20 hour days and only getting 5 hours sleep.

January 21st - Matt comes home from work around 6pm and is not acting "normal". He eats, laid down at 7pm because he didn't feel good and woke up 2 hours later talking like he was drunk, slurred words, unable to move, felt exhausted. I thought it was his Diabetes and gave him sugar to bring up his blood sugar. He eventually felt slightly better that night, but, never right and kept saying this doesn't feel like low blood sugar. The next day he stayed home from work and seemed fine.

January 23rd - Matt feels the same way again - we go to the hospital - come to find out that at age 41 he had a Stroke! He had a Stroke because his blood sugar had been out of control for about the last 18 months. Many diabetics have Strokes and Heart Attacks. We immediately go see my Neurologist, his Endo. Doc and a Family Doc. He is now on a baby aspirin a day and all the following tests he had came out fine (Echo for his heart, Doppler for his Carotid Arteries, 3rd Cat Scan of his head for blood flow testing). So we have no cause for the Stroke other than his Diabetes. They do call it America's Silent Killer.

February 11th - 3 weeks to the day of his Stroke, his Boss calls him in his office and says we are going to have to let you go as you have been seen answering emails on your personal cell phone. Oh wait....you mean the personal cell phone that contains my WORK email?! Bottom line is they wanted to fire him because he had a Stroke and he drives their vehicles for work and well "what if" he had another Stroke while he was driving their vehicle. HIGH RISK. In the State of TN there are no laws protecting the employee from such a dismissal. It took them 3 weeks, but, they tried to find a way to get rid of him. So he is now unemployed AGAIN.

We filed for unemployment if he gets it...it's a whopping $275/week. That is the maximum ANYONE can get for unemployment in the state of TN! Crazy! That won't even pay rent/mortgage.

Now you'd think that living with his parents would be a cost savings for us, but, because of this cold winter and their 1950's house that just leaks heat (I see $$$$ signs coming out the roof every time I drive home) we pay them about $550/mo in Utilities, then $150 for our storage unit and another $350 in gas because we live so far from my work, plus the car repairs I've needed. You do the Math...we are saving squat by living with them.

On top of all this, work is so stressful, I am having to take daily Xanax and biting my tongue daily as to not tell my boss off...my boss who wants me to become a manager so I can deal with the daily crap he is trying to deal with..and failing. NO THANK YOU! I am on a sinking ship. Working 50 hours a week, sometimes 60.

So between Hubs not working again, his being depressed because of all this, his Stroke, Nagging him to care for himself and his Diabetes so as to not have another Serious Stroke, Trying to get along with the inlaws, running constant numbers in my head trying to figure a way "out" of this whole situation - I am feeling hopeless. And Oh Yeah, we have to be outta here by May for when his Sister and Nephew move in...a whole other long story.

Many of my friends and family are having similar job/money/health issues. All I hear is bad news anymore. I really need a vacation...alas...I cannot afford one...

Oh well, what's new with you all? Tell me something good! :)

** I should mention my husband is fine after his Stroke - it was a "warning" Stroke, he did not loose any bodily functions**

Hormones and MS in Women

Last time I saw my Neuro about 6 months ago, he mentioned to me that I should probably not have serious MS progression until after I hit Menopause. Not that I won't have flares or that he was determining my disease progression, because we all know that's not possible, but that I may experience the more debilitating symptoms after I begin Menopause. After hearing this at that time I took pause and thought, it makes sense. Part of what may control our disease could very well be hormonal.

I remember thinking of my mother who had MS and while she was pregnant with my younger brother and sister (10 years my junior) all of her symptoms went away and immediately after the "twins" were born, naturally at that, she came home in a wheelchair and never got out of it again. I won't rehash my mothers story as it is not my story. But it has most definitely influenced my choices and how I live with MS. One of those being mindful of hormonal levels and preparing for when my hormones start to change.

While I could be 10-15 years away from beginning Menopause, my mother went through it early, in her late 30's. Which is exactly the same time she began the progressive track of the disease. So, while at my Gynecologist this past week I mentioned what my Neurologist had said and asked about how Pregnancy Hormones influence our bodies. To my surprise, my gyno completely understood what I was speaking of and was familiar treating women with MS who are pregnant.

The hormone believed to make all those pesky symptoms go away during pregnancy is Estriol. Estriol is one of the main 3 estrogens produced by the human body. I've been doing some research and found that studies regarding Estriol and MS are and have been underway and for that I am thankful. My Gynecologist mentioned to me of some self-pay hormonal treatment centers that are in my area and some of the Synthetic Compounds of Estriol that are becoming available. While she said it isn't something she would recommend for me yet, nor was she promoting them, she did want me to know about it. But also that it is quite expensive.

Some of the results I read about from the MS Studies included up to 80% reduction in active lesions and improved cognitive function. I'm not going to write a complete paper on Estriol and MS, but, I want to make sure women with MS are aware of the link. I had already planned on taking replacement hormonal therapy when I am menopausal, this is just one more reason to consider it.

Please do share any knowledge you have about this topic in the comments section!