Genome Study for MS

Genome Study for MS

I'm Back!

I'm back. Almost a year later. I plan to blog more instead of using my facebook page for anything other than "fun" stuff. I will post an update soon!

New Anti-Inflammatory Agents Silence Overactive Immune System

The discovery of a new way to fight inflammation offers a promising new approach to treat inflammatory autoimmune disorders such as lupus and multiple sclerosis, which are marked by an overactive immune response. Read HERE

Can You Pass The Salt?

1. Bladder Spasms started today. Thank God for Vesicare (can't you just hear the commercial now?!...Come on I know you can...telling you in a smooth, sweet, soft voice how they are going to help you with overactive bladder...well get to it!).

2. Had a Massage Tuesday Started having MS Hug Symptoms Wed and Thurs. No more Massages..who cares if they can release the toxins in my body to help me get rid of them. Apparently they do better bottled up in my joints and spine than released into the depths of my body.

3. BP was a perfect 120/84 at Family doc today...so when I asked if I am craving Salt because of my BP meds she JUMPS up and yells out to please get me a blood draw to check my electrolytes. In short, no you don't crave salt because of them but apparently they can screw with your electrolytes to make you want salt so you don't pee it all out...which works SO well with Overactive bladder when u pee every 1-2 hours. She never did tell me what to do about it but told me I could have salt and stay off my 1 BP Pill a diuretic until my bladder calms down...at most 2 days. WOW...2 WHOLE DAYS and eat all the Salt I want? I will be bloated by sundown.

4. I was full and bloated by sundown. Took BP...High...155/105...back on pills uh...NOW.

5. Insomnia for several days now...from what I have NO IDEA. I just want to sleep during normal business sleeping hours. Not during the day ... which just leads to me having Insomnia at night!

6. I'm not sure if Hell is anything as Hot as TN is in the Summer, but, if so I feel really sorry for those poor bastards! Right now I want to move to Iceland...it appears my optimum feel good temp is less than 95+ degrees...who knew?!

7. I'm BORED...with a capital B. But when one day you feel satisfactory and the next you feel like you lost the BIG FIGHT with Muhammad Ali you're kinda screwed to try to plan anything. I hate that most about MS.

8. A young man (27) my husband works with was told he may have MS. What does my husband do...immediately tell him about ME. Uh DUH...didn't we have this conversation like 20 times...you do not tell anyone at work that I have MS it could affect your future with the company negatively...oh wait...he promised not to tell a soul...the same guy who ran into work to tell you he went blind in one eye last week and they think he has MS???? And then ran to talk to all the Nurses at work (Because we know that if you have RN behind your name then you are qualified to advise on MS)...yeah that secret will get kept.

---- Rant over for now....stay cool peeps...it's HOT HOT HOT out there...at least my body is telling me it is!

Heat, Fatigue & MS

I've decided to post about how Heat affects some of us with MS. As I've had to spend the last 2.5 days without AC in 90 degree temps.

What the MS Society Website tells us is "Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. For example, some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses."

For me and many others Heat = Exhaustion or Fatigue. I find this the most debilitating symptom for myself during the summer months. The Heat also increases my spasticity during the summer. Here's the kicker for me...I'm not even outside and it's like my body knows it's hot out there and Exhaustion sets in. This is what does not make sense to me.

Fatigue is one of the most common symptoms in 80% of people who have MS. For those who don't have MS I describe it as it's not like you've worked all day and your drained and tired. It's like you've slept all night and you wake up exhausted like you haven't slept for days. I've learned Fatigue and Tired are two very different words. My fatigue lately has me contemplating moving to Alaska. Frustrating because as I am in a 70 degree house and comfortable my body knows it's in the 90's out there and it doesn't want to move. Sleep is the key word during my summers. Upsetting because I used to love summer.

Heat I've found most affects existing symptoms or ones you had in the past and they come back because of the heat. Lately my vision has been blurry in my left eye because of my Optic Neuritis history. My leg muscles are tight due to spasticity, my balance is off and the big one I'm Fatigued or Exhausted frequently. What's a girl to do. Some days I press on, but some days I can't. It's a fine balance.

So if you are struggling with the Heat this summer I understand. A few things that HELP me are taking showers in Tepid water, sometimes even Cold. I LOVE my Arctic Neck Wrap! It lasts for hours and covers the carotid arteries just perfect to cool you down fast. I wear it in public all the time, who cares, just looks like a neck brace. I hear the misting fans are good as well. And of course drink lots of COLD fluids!

How do you deal with your MS and stay cool during the summer?

Become an MS Support Group Leader? Me?

I'm a natural born leader. I know this about myself. Every job I've ever had they always asked me within a short amount of time to lead or be in Management. So after my Nashville MS Walk Team raised the most money of all the Mid-South Teams by Double what everyone else did I was elated and also knew they would ask me to do it again next year.

What I wasn't planning on was to be asked to be a Leader for the Nashville MS Support Group starting next September. I have mixed feelings about this request. I am honored they would ask me to do so. It would give me something to do since I am not working and allow me to network with Many local MS Physicians, Nurses, Drug Reps and fellow MSers.

The big question I feel stuck on is do I want to have to be responsible for bringing good topics to the table, setting up speakers, organizing food donations (lunches) from Pharma Companies, Scheduling the Meetings and then field emails to/from 200+ people every month from September to May? Sounds like allot of work when right now I'm not 100% yet.

At the same time I am bored to death at home but would rather do something that would bring in some income until my SSDI is approved. I'm also not sure I want to put that much focus on MS. The current volunteer leader is always at the MS Society doing something. I don't want to think about my MS all the time. I don't.

And I'm unsure about working WITH the local chapter of the National MS Society. I would need to know their expectations. Has anyone done this before? I'm trying to weigh this from every angle so please give me your thoughts/input. Those of you who are greatly involved in the MS Community do you ever just want to forget about it or do you find it rewarding and beneficial?

What are your thoughts or insights?

Could the cure to MS be as easy as Chelation?

Read this local newscaster's story regarding her fight against MS. There are 3 parts make sure you watch them all. Have any of you taken any of the steps she is taking in her treatment?

Read Story HERE