Welcome to the MS Blogging Community

New folks discovered around the MS neighborhood. Welcome to the shortbus.

• My Dwennimmen: The Voice of My Lesions by Krista

"My name is Krista. On April 14, 2009, I was diagnosed with Multiple Sclerosis. Within a few hours of the diagnosis, I got my first tattoo--a Dwennimmen. This is my forum to toss out thoughts and information about these and other elements of my life as a 34 year old, active, tattooed, diagnosed dame."

• Living with MS 38yrs by Suejan

Suejan describes herself: "I feel old now, am retired, used to be PR journalist. Have autistic son 36 & identical girl twins 33. Interests: art, gardening, antiques."

• Learning to Live with Multiple Sclerosis by Jeff

Jeff describes himself: "I was diagnosed with Multiple Sclerosis (MS) officially on January 22nd, 2009. This is what I live with on a daily basis."

• In the Company of the MonSter by Luis

Luis describes himself: "I am 67 years old, progressive MS since 1989, dx'd 1976, use wheelchair in the apt. and outside. Considering giving up driving."

"How miserable can Life be!" I read the other day, in my case the adjective "miserable" is not the appropriate one, I have a wife worth her weight in gold, she bend over backwards for me, I have two sons and a daughter that always call or come over just to talk with me for a little while, I have read horror stories of MSers just abandoned by their family, wives that run away from their partners just because the sexual life is non-existant! and is when I read about those terrible cases that I say proudly and as loud as possible: "I HAVE A BAD DAY BUT I ALSO HAVE A WONDERFUL FAMILY!"

• Life as a Mom by Laura Q
  

Laura describes herself: "Mom of 3 plus 2 amazing grandchildren. Live a double life. One in Canada, the other in the US. Just your basic ruckus causing mom."

My son was just informed that he is laid off from his job at a lovely (not) company in Calgary. We believe it is due to the time he had to take off due to his last two MS relapses. He was sick with the flu on Monday and when he returned to work today, they gave him the news. Sure wish I could prove this one but companies are so good at covering the behinds. The stress was just beginning to lift as he had moved with his friends into his own place and life was beginning anew for him. I know they say things happen for a reason but this one is hard to find the reason for. He finally found a job he really enjoyed doing and was looking forward to a future with them. I guess we have to believe that when one door closes, another opens. It's just all so frustrating for a kid who is trying to get well. This mom wishes he's just move home and take a long rest from it all before trying to begin again but I have to let the birdie fly...I have to let the birdie fly...can you tell I'm trying to convince myself?

Primary Sexual Dysfunction in MEN with MS

The most common problems experienced by men are difficulty or inability to get or hold an erection, decreased genital sensation, rapid ejaculation, and difficulty or inability to ejaculate. Difficulty acquiring or maintaining satisfactory erections seems to be the most common male complaint in MS, with frequencies ranging from 25 percent to 75 percent of those surveyed.

Erectile Problems

In some cases it may be hard to tell what is causing the erectile difficulties. Demyelination may directly affect erectile function. Medications may also be factors. Stress and anxiety produced by living with MS may contribute to or even be the primary cause of erectile dysfunction. Understanding the mechanics may help you and your partner.

In the presence of sexual stimulation, nerves in the spongy tissue of the penis release the chemical nitric oxide, stimulation the production of something called cyclic GMP which relaxes the smooth muscle in the penis, compressing the veins. When this happens, blood flows in but cannot get back out, and an erection occurs. Drugs used to increase GMP include sildenafil (Viagra®), vardenafil (Levitra®), and tadalafil (Cialis®) All three drugs work by allowing an erection to occur when a man is adequately stimulated; they do not produce an erection in the absence of stimulation.

Additional Options Available

The vacuum tube and band device can be an effective alternative to medications. It consists of a plastic tube with a pump and band for the base of the penis. The tube fits over the penis. The hand pump produces vacuum pressure, and the band constricts the veins. This makes the penis fill up with blood, producing an erection. The tube is then removed. Because of its effectiveness and availability, the vacuum tube and band are widely used by men with MS.

Rest this post in its entirety:

Sexual Dysfunction in Men Living with Multiple Sclerosis

Multiple Sclerosis has 1000 Faces

In a virtual hands around the globe, today is World MS Day as national MS societies led by the Multiple Sclerosis International Federation join together to spread awareness, promote research, and improve the quality of life for those living with MS.

Together every individual, group and organisation in the world can fight to improve the quality of life of all people with MS and the many more people affected by it. The global MS movement:

• Undertakes research into treatment for, and an end to, MS
• Develops the capacity of MS societies to support people with MS
• Communicates information about MS
• Advocates and campaigns for the rights of people with MS
  

Join the Global Movement. End MS!!
worldmsday.org

My RA and MS Diagnoses: The Autoimmune Diseases Jackpot

It is hard to know if symptoms of multiple sclerosis or symptoms of rheumatoid arthritis delayed the diagnosis of either disease in my case. My journey reached a diagnosis of multiple sclerosis in October 2005 with the diagnosis of rheumatoid arthritis in April 2007 -- 18 months later.

But it was in 1993 that I first experienced symptoms now believed to be related to multiple sclerosis. These symptoms included impaired vision, headaches, and depression in the months following a minor whiplash event. The doctors at the student clinic in the School of Optometry at Indiana University suggested that I have an MRI. Basically, they wanted to make sure I didn't have a brain tumor. I did not have a brain tumor. Any inflammation of the optic nerve that might have been present had resolved by the time I had the MRI. Eventually my vision problems and headache went back to normal leaving me with a mysterious, unexplained event.

In 1995, I tripped on the way to a concert by the Evansville Philharmonic. I don't know what I tripped on, but I trashed my french horn, sprained my wrists, and broke my left arm just above the elbow (hairline fracture). After this event, I developed an achiness in my left arm and wrist that I simply became accustomed to over the years.

For the next five years, I had several random and vague complaints which centered on my hands, which I wrote about in "Carpal Tunnel Syndrome or Not?" Being seronegative certainly delayed my RA diagnosis, but likely reminding the doctor that “I had optic neuritis in 2000 and my mother has lupus” probably didn’t help either. During these years, I also experienced fatigue, weakness, and walking problems. But I still didn't have a diagnosis of either disease.

Read this post in its entirety:

Which came first, a diagnosis of rheumatoid arthritis (RA) or multiple sclerosis (MS)?

Bigger is Better, right?

Carnival of MS Bloggers #36

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"Without Darkness There is No Light"

Photos by Nina

The Shadow Self
by Nadja Yse Stringer

I long to be only as I am--
To let the voice of doubt in my mind
Quiet.

I swore I would give up this addiction--
My desire to find chaos where there is none
My willingness to see obstacles where none exist.

Shadow self,
Nemesis
Catalyst
Anarchist in my mind.

I am not you
I am not my fear
I am not just my shadow.

But you are real
Not to be ignored or denied
You will have your say--

There's darkness
But there is also creativity--
Layers of my being only revealed
In the mirages with which you fill my mind.

I am not you
But you are me
Something deep in my soul that stirs me
up--

I never was silence
I never was tranquility
That too is not my nature.

I am bursting
But I cannot create without catharsis--
You are my catharsis.

I long to shrug you off
But you too have a place in my being
I cannot ignore your pull
You are a parasite
but one I need for growth.

So I battle you,
I resist,
I let you fill my mind with whispers of hate--
For my weaknesses

But you will not be denied--
Alone I shine briefly
But then go out--

Struggle as I may
I create nothing,
Grow nowhere without your shoves.

Without darkness
There is no light
Without either,
All things are cast in shadow

I can fight you
Or I can use use you--

Diary of Trying to Walk Again with Multiple Sclerosis - Day Four
by Diane J. Standiford

After 19 years of allowing medical types (that means doctors, therapists, and such) to direct my MS therapies I have decided to do what I have had to do all my life (those who want to argue this point---BRING IT): GO IT ON MY OWN.

I know how I got to this point in my non-walking/standing life. I alone watched it unravel before my ON (that's optic neuritis for you non-MS readers) eyes. I know the moments where changes began, I know what kept me down. My big idea is this----(Wait. Understand I am full of big ideas, some say full of something else, but constipation has never been a problem for me, though I never used a public toilet in over 25 years, unless you count that hole in the ground at some stupid park my mom just HAD to visit...now looking back I don't know how I did it, but I also rarely drank water...I must have been dehydrated all my childhood. Seriously, I'm surprised I made it this far with only a touch of cancer and slap of MS!) I will work in reverse to regain what I lost. Not much different from using psychology to help someone confront their demons or find their lost keys.

First up: rebuild muscle in left leg. Start standing on it every morning a little longer each time. Get an exercise bike I can use from my power chair. Shave my legs. Buy some shorts. I have exercises for all the muscles. I have cuff crutches, TWO quad canes, a gait belt, a rollator. Must eat protein, up vit D and calcium. Buy the "Rocky" theme song for my Ipod.

Then I will need people. Think Diane, think....where to find people to help me walk, hold onto my core/back...people people...

Day Nine:

Today I walked. I WALKED. Just 6 steps, but it brought the house down! There were tears of joy (partner) laughter and wows (friend) and "Yes I Can." (Moi)

Friend wrapped a gait belt around my upper leg (the dead zone leg) and as I stepped out I would shift my weight right to left telling her when to give a yank. We all agreed I could have gone farther, but we were all a bit overcome and will regroup tomorrow.

This all came after we fixed the printer, I did my mini exercise bike, my arm weights, dealt with my dental insurance saying I didn't exist, snacked on leftover salmon and fresh brocolli and sat in a moment of sun on the balcony. (Next week is supposed to be fantastic!)

Did I mention I WALKED??!!

Day Eleven:

This week was hard because I have an aide who is young and not very skilled. I manage my day so as to be not in need of her; she leaves early. So, I can't try the walking on Friday or Sat., at least until I get my helpers aboard. My laptop typing wears me out, so I must avoid it on those days.

Today a friend came over and after I took a spin around the new digs, we did exercises---the mini-bike, weight bearing (standing without holding on to anything), arm weights, ROMs (Range of Motion---she moves my legs through natural use movements), yoga (In my lift chair, lying flat I do positions.) and then she strapped my left leg and we took off---four strides out and back. Using the walker does strain my arms though and I had to schedule my Dr, appt. for late next week. He will just suggest PT or sleeping in my bed.

Did I mention I WALKED FOUR steps out and back? It always feels so good, so right. I must make my brain build a new pathway. If only I had Montel's people and money...LOL. No, this is MY life, MY MS, MY path.

Tomorrow is visit to new dentist in my new neighborhood. My visit to my neurologist last Friday was ridiculous; if I hadn't gone with a friend I would have thought it was all in my head. Oh well, another post.

Did I mention I WALKED??

This concludes the 36th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 4, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 2, 2009.

Thank you.

Comments for this post.