L in the Southeast

L in the Southeast
Location
Atlanta, Georgia, United States
Birthday
November 04
Title
Retired PR Director
Bio
I am a retired Public Relations professional who now writes purely for fun and catharsis. I covered most of my memoir-type pieces in the first three years here. Lately I have dabbled in politics, current affairs, pop culture and movie reviews. Life is my muse.

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MARCH 4, 2013 8:27PM

It's All In My Head

Rate: 38 Flag

 

Brain with MS

 

Those who know me well understand I spend the vast majority of my time inside my own head.  It’ not, I don’t think, because I am self-absorbed so much as I am self-curious and self-driven.

Last week I received the news that there is an 80 percent probability that I have Multiple Sclerosis. It wasn’t exactly unexpected news, albeit news I would prefer to have never received. MS tends to run in families; my mother has MS; her first cousin died from complications of MS; and another first cousin’s son was diagnosed five years ago.   

For years I have pursued the cause of a laundry list of seemingly unrelated symptoms, a journey that has sent me into the hallways of far too many medical specialties.  Daily headaches. Nerve pain in first one leg, then the other…seven years later.  Both disappeared.  Both feet have been totally numb for the past seven years.  Sometimes the numbness climbs its way all the way to my knees…once all the way to my thighs.  And before I could get the scheduled neurological tests done for that, the numbness traveled to my arms and hands.

As crazy as it may sound, I was relieved to finally hear that the problem is all in my head.  My brain is misfiring, failing to get complete signals to my limbs and sometimes my optic nerves. That’s happening because an auto-immune disorder is causing my body to destroy the covers of my nerves. Nobody really knows exactly why that happens.

 

MS diagram

 

So, I did not fall apart from the new diagnosis.  I have watched my mother cope with her crazy quilt of “episodes” for 44 years.  I knew I had no choice in the matter, that I would have to do the same.  And I am a tough old bird who refuses to allow much of anything to get the best of me.

Or so I thought.

I wasn’t prepared for what has been happening in the six days since I got the news.  Before the diagnosis, when I was at my workout class and the muscles in my thighs seemed to be weakening, I gave myself a bruising self-talk that included words like wuss and sissy.  When one week a few months ago I could barely walk a block without stopping because my legs felt like I was wearing concrete blocks on my feet, I remember being a bit concerned and wondering if, in fact, I could no longer stay in denial about whatever it was going on in my body, but I still forced myself to keep on going, telling myself “it was all in my head.”

Now I have another problem.  Now I KNOW why my legs are not working properly, but I still don’t want to give in.  I still feel like a wuss unless I force myself to make it through the dreaded stand-and-sit-in-the-chair-40-times-in-a-row portion of the rigorous workout designed for seniors.  Is that a good thing or am I being unreasonable?  If I accept the illness and allow myself to do less reps, will that be laziness or simply reality?  If I don’t fight every step of the way, might not the disease progress even faster?

I wasn’t prepared for this dilemma at all.  I seem to be more tuned in to the symptoms than I was before.  Well, before, I was trying to convince myself they weren’t there!  That they were all in my head.

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Thanks, Frank. Your encouragement really works.
I know a bit of what you speak of... my husband has nerve damage and he never knows whether to give in and rest or fight it... it is an everyday decision. Depends on the day. Hang in there sunshine!
Don't be tempted to roll over. No disease today is what it was five years ago. We know lots more now and are learning every single day. Hang in there - never give up, never surrender!
Well you know me by now. I rarely force myself to do anything. I like to relax. I do just enough walking and admiring nature to feed my soul. Stress seems to me to be the real culprit. My heart goes out to you. Take it easy and do whatever you want to do whenever you want to do it.
If nothing else, not giving in keeps the will strong. Doing that extra exercise gives you a measurable accomplishment against this disease. Hang in there and good luck. R
Let me put it simply: Fight thatg bitch every step of the way.
I think you're supposed to think whatever it is that makes you feel better. And that might change from day to day. Be kind to yourself.
Keep pushing hard. It's all you know, anyway so why change your game now? Let us know if you need a cheering squad, we'll be here.
Gayla: I guess I’ll have to take it a day at a time, like your husband does. Sometimes, I have no choice but to rest, but most of the time it is mind over matter.

nilesite: Good advice and the kind I am most comfortable with.

Z: I love your laid-back attitude.

Gerald: I like your way of thinking. Thank you.

David: Message received, good buddy. :D

Bellwether: That sounds right, too. It’s good to see you!
Caveat- I would also ask the doc what he recommends and make sure that you won't hurt yourself if you push through. I wish you the best in fighting this, and hope that today's therapies help you to hold it at bay for a very long time.
Keep on truckin. Ok that was obviously a lame statement.

Be pissed, and do whatever YOU need to do.

Is MS still one of those areas that they have made no new discovery in curing?
It's a tricky psychological adjustment now Lezlie. You'll be tempted to attribute every malady to MS. From a distance I'd say that the best approach is to keep on keeping on. Do what you can but recognize that MS or no, age itself will slow you down. I've had the experience in the past couple of years of having certain body parts weaken or malfunction for a while. Nothing serious yet but that's bound to come. I know it's easy to tell you to keep your spirits up but really, what's the alternative? Good luck and I'm still hoping for the 20%.
I can't think of anything that works out better for taking it easier and not fighting it - though I think I may have heard of something like that once.

I wonder if it would be a good idea to find a support group or other kind of group of people who are surviving with the same thing. Somehow I seem to think that's a good idea for everything but it just seems like it's a way to get first-hand information from the most direct source.

Whatever you decide, I'm sure you'll do the best.
onislandtime: You know me well. lol

just phyllis: I am saving all these questions for my next appointment. He seemed to support as much activity as possible.

Diane: Actually, there has been a lot of new research in MS in recent years, and several new medications, but still no cure.

Abra: Yes, there is that age thing, too. You are right; I’ll probably ignore the aging and blame MS for everything. Either way, I’m going to slow down whether I like it or not, but I don’t have to be too cooperative about it. :D

nerd cred: I have to admit to having an aversion to groups anyway, but in this case I don’t know how helpful it would be because of the unpredictability of the disease. No two cases are alike, I’m told.
L....I agree. Don't give up the reps. Or anything you don't have to.
Watch TedX talk by Terry Wahls, MD. Plus she's written a book called "Minding My Mitochondia," about her recovery from Secondary Progressive MS. It's not a fun disease, but there are things she had done that work. It won't hurt to check it out. My best wishes are with you. Carol
What C. Berg says. I've seen enough to know that mind has more power over matter than we *ever* give it credit for. Not denial, but in other ways. Hit the library. Read some good metaphysical stuff. Double check things that are adjustable, like food and vitamins that our fantastic bodies use in fighting disease and to create health in all of our cells. When you're doing what you can control, then you can do what you feel like doing without any worry at all.

Carpe diem! and here's a little gift for you: http://www.quotegarden.com/carpe-diem.html xoxo
My dear, strong, intelligent, extraordinary friend, you've been dealt literally a body blow. Suspecting is one thing, knowing for certain is quite another. Still, you're the same person with the same issues before they were named.

So pull these excellent questions into a list, review with your doctor, specialist, physical therapist... everybody who is participating in your care. Make a plan about how best to fight when you can and how important it is to rest when you must.

It sucks and you're allowed to be angry, but not to live angry. Find out how to live productively and count on your friends, there and here, to give you whatever support you need. xoxo
It's so hard to know how to deal with illness. I have a very different situation than yours, but I so identified with this post. Every day with IBS I wonder how much I have to just shake it off and say "It's in my head", and how much I have to listen to - and sometimes stop doing things because of - physical symptoms. I think you've made it this far by being strong and pushing yourself, so if you can, it seems like that would be the best way for you. Of course, if there's too much pain or difficulty, take it easy. But if you can surpass them, you'll probably feel a lot better. I love what toritto wrote, on that account. Good luck to you, Lezlie. You are wise and strong and determined, and I know you'll do what's best.
If I know anyone in this world.. you can fight this.. I know there are no cures.. but you can do this.
HUGGGGGGGGGGGGG
When stuff like this happens, you come quickly to the understanding that our containers are a meat circus, just full of surprises, you learn to do what you are able to do with the meat.

Never, as others have said, give up on the meat circus. It's just a different act in the ring.
That you know what you are fighting will click and you will know how far to push, when to back down but you are far from a wuss!
Give yourself time to adjust to the knowing and you will be back to your old self in no time...
I am encouraged by my doctors to exercise every day of my life to keep Parkinson's manageable. Some days I feel like a tri-athlete and tear up the treadmill and the free weights like I am 18 again. Some days I feel like I am at only 20%. It can be depressing but on those days just do what you can. I was told that when I felt tired or began limping or a limb would go rigid, to keep on going safely but don't push. Keeping my muscles strong helps me sleep at night better, gives me a better appetite...
David Spero, RN provides pretty good and sensible advice about figuring out how to deal with something chronic like MS. My library had his book, maybe you will find this helpful.

http://www.art-of-getting-well.com/

http://www.art-of-getting-well.com/
To you we offer that if we could take shifts and bear that fighting burden, we would do so. You are worth keeping. My mind searches for a way for that to be so, but it isn't so. For you, and for us, you need to do all of that fighting. Yep, this is selfish of me for saying so. You're worth keeping. I don't know what else to say. Fight!
Push through it but give yourself a break from the psychic whipping. Your learning to deal with the news. I swear....with Marty.....the best thing we can to is do it one day at a time, try not to get to far ahead. Best to you....you will do well.
I am in a place of telling myself things like you did. I get it. But I also know that what Frank said is right. Just keep keeping on. It isn't over until its over. I have a new motto, "Live it until the last." My best to you, sending love and light. Sheila
It takes some time to digest a diagnosis. And then more time to learn how to live with it. You will, Lezlie. You'll do it beautifully. ~r
C Berg: Thank you for the references. I will definitely check it out.

Cranky: Yessir!

Gabby Abby: Thank you for your wise advice and the gift of great quotes.

Sally: At the moment, I don’t feel like the same person, but I know she’s in there somewhere. Anger is not part of the picture, however. I’m just a little disappointed. Thanks so much!

Alysa: Let’s make a deal. Let’s you and I promise each other to live our lives as if we never got these illnesses – except on the days when that’s not possible. Deal?

Linda: Thanks for the encouragement, kiddo. That makes two of us.

greenie: Meat circus. No that’s a description I’ve never come across. :D You are one in a million, my friend.

LL2: Thanks for your vote of confidence. I won’t let you down.

Linda: Exactly. That’s what’s been happening to me for the past few months. One day at my peak, the next day, barely able to make it through. I will always exercise – it makes whatever’s bothering feel better after I work up a good level of endorphins.

another steve s: Thanks so much for the reference. I will definitely use it.

Gary Fandango: Thanks! The doc says there are a couple of drugs that have been successfully used to slow the progression. Let’s hope they work for me as well.

Bill: What a sweet, sweet comment. Thank you so much.

Husband: Great advice from someone who really knows.

Seer: I had to Google CMT. Sounds very much like the journey to MS. Good luck.

Sheila: Thanks so much. Let’s both listen to Frank. He knows.

Joanie: You know, my dear, I wasn’t aware before now of just how well you know this. Thank you.
I am happy to tell you that Multiple Sclerosis is not so mysterious anymore. There are so many legitimate and wonderful sources of information available these days and a lot of resources for patients, family members, friends, co-workers and others in your life.

If your doctor decides that yes, MS is the reason for your symptoms, I encourage you to visit www.nationalmssociety.org and www.msassociaton.org for starters. I also hope you will work with your doctor to select a drug therapy that works for you so you can get on it as soon as possible and stay on it instead of waiting to see how MS might affect you. No, then the horse is already out of the barn and you don't want that. In the medical community the consensus is clear on using disease-modifying drugs, but the educated choice of which to use should be yours.

As others have indicated, it is a whole different world for patients than what is was like when your mother and other relatives were diagnosed. There is still no cure, true, but there are all kinds of disease modifying therapies that can as many say, basically stop MS "in its tracks."

I was diagnosed in 1989 after five years of on again, off again symptoms that seemed bizarre. Various doctors guessed that my issues were due to stress, sleeping wrong, and the most memorable, "breathing incorrectly." Really?

My first exacerbation (flare, attack, episode or whatever you wish to call it) occurred when I was 19. When I finally knew what was going on at age 24 when MRI technology made it very clear, one of my first feelings was relief. I thought, "Okay, this is not a brain tumor and I am not crazy. This is something I can deal with. "So, I am Natalie v. 2.0 and because I am on a drug therapy I have taken back that sense of control anyone with a chronic disease loses when diagnosed.

During all these years most of my life has actually been normal. There have been periods of ugly MS "stuff," but am still going. After nearly 30 years MS has chipped away at me, but I am still walking, cooking, driving and avoiding dusting. I enjoy life and am accomplishing goals because I am not done yet. For example, I am a MS peer support advocate and enjoy contributing what I can to the MS community. I also write and do other entertaining things.

As your learn about MS, I think you will be impressed by current statistics about quality of life, longevity in the workforce, parenthood, grand-parenthood, etc. I am not a trained medical provider, and certainly not "Dr. House," but at this point it is my understanding that for the greater percentage of people with MS, this disease is mostly, if you'll forgive me, a pain in the butt -- more at some times than others. You can handle it. You can.

Warmest regards,
Natalie

R
Despite my best efforts I need to make a correction:

The web address for the Multiple Sclerosis Association of America (MSAA)is www.msassociation.org

I left out the 2nd "i" in association the first time.

Also, since I'm back, do look into personal energy conservation. I have learned that living successfully with MS also involves learning to listen and pay attention to what our bodies are telling us. If I am feeling too hot, I do what I need to do to cool off. If I am tired, I do what I need to do to rest. Then I get back to it!

Please feel free to PM me with any questions and I'll do my best to provide answers, refer you to where you can find them - or just listen. -- Natalie
Also, I take Copaxone, one of the injectible disease-modifying drugs. I feel it has really stablized my MS. It is sub-cutaneous, under the skin, uses a small needle and I take it daily. I also like the lack of side effects, though my skin needed a few months to adapt.

I was always terrified of needles, but taking my shot every night is automatic, like brushing my teeth. Amazing, to family members who knew me way back when, but true. :-)
A parallel situation here . . . I'm getting a shoulder replacement next week. I really only allowed myself to feel the pain AFTER the specialist told me that, based on the films, she wouldn't be surprised to see me for surgery soon. You're dealing with a moving target though, which makes it harder. My thoughts are with you, HB
Natalie: Thanks again for your great comments. My doctor and I have already discussed drug therapy, and I have indicated I have no problem with needles -- I give myself B12 injections already. My second MRI is scheduled for next week and my follow up appointment is in April. I have already visited the MSAA web site and found it to me most informative. Trust me, I will know everything there is to know about this disease shortly. That's the way I roll. :D Thanks for your generosity.

HB: Actually, there is a psychological term for the phenomenon - reticular activation system. Good luck with your shoulder.
L.

While you may not be a spring chicken anymore, a tough ol' bird was that chicken I got from the store the other night.

On with the tale of two grandparents. Being from the south tell me you don't know both sets.

My mother's parents they just kept going. When my grandmother was in her 80's, in the 70's, my uncle came to get her car to change the oil. He did, he just didn't bring it back. See she thought it was nothing to drive from SW VA to FL to see her brother. Mom's side of the family just kept going until they died, at an old age.

My dad's parents got to retirement age and they did. They set in their rocking chairs and quickly got old and died.

So why would you want to be like my dad's parents? Granted you have to do what your doctor says, and from someone who has had his hips rebuilt, what your body says.

So the question today is what was different the day after you were told what you already knew other than you knew for sure? As far as the pains go, nothing.

Chin up. After they rebuilt my hips (FVFG) I sat in a chair for almost two years until I could put full weight on them again. When I allow it to get me down I was out until I could pull myself up again.
Warmest thoughts, L. My auntie was diagnosed with MS probably a decade ago, and she battles with it every day. :hug:
I like that, Lezlie. Let's say - deal!
All you need is within you and surrounding you. Love.
All you need is within you and surrounding you. Love.
Hola señora L..... I am so sorry for these news but it is obvious that you are a tough one so... yes, accept this new health condition but don´t stop doing the same work out you have been doing... do not let your mind get ahead and bomb your body ..... keep it up with the work out and delay MS as much as you can....
I love you very much and I am sending you my best wishes and energy
Rated and shared
ANd don't you dare give in! You can do it, girl. R and hugs.
Hang in there, Lezlie. You are a strong woman. ... I've always been bewildered by the fact that Colorado has one of the highest MS rates on earth. I always wondered if it was related to altitude.
I just read a news story about a Colorado doctor who says MS is prevalent in people from northern Europe. Also, it is linked to genetics, and a lack of vitamin D. ...
Keep on keepin' on....
L-Wow. I am painfully aware I could be next to have such a dignosis. I have a close female friend afflicted with MS. She was a poet and translator and kept it up over the years despite the growing affliction. I will use her as an inspriaton if and when it happens to me. I agree with Toritto--"don't give anything up until it's taken away." Death will inevitably take it away but we must use the gifts we have as long as we can. You are in my thoughts.
There will, I pray, be many constructive things that will help you on this journey. As many others have said, considerable progress has been made during the past decade. That does not take away the sadness or the struggle, but it does offer some hope. Just as important - perhaps even more important - Try to do something YOU ENJOY
My comment got truncated - Try to do something YOU Enjoy; something you look forward to each day.
Always,
Ranger
I don't know much about MS but if it helps you a wee bit I hope you know you're respected and admired by so many for your courageous spiritedness. Whatever you do decide to do with treatment options will also allow your willpower to kick in when you need it most.

There are so many mysteries surrounding the mind and the diseases whose afflictions cause many memory and motory skill losses and while I'm certainly not a medical provider, I know you will make sound decisions concerning your present and future medical care and treatment plans.

Fibromyalgia is another relatively new disease which has been discovered recently and while scientists and health care professionals are treating their patients for the symptoms, they should also consider pain management techniques that include patient support groups where counseling sessions help provide updated info on research and developments in homeopathic/alternative medicine fields that can also alleviate overactive nerve pain and further nerve tissue damage that leads to muscle atrophy, etc.
A lazy broad like me would lie down and wither away at the first sign of trouble. Seriously. The fact that you're strong-willed and active in spite of your symptoms...this is a gift. Be thankful for your fortitude and psychic health. Oh, and sit your ass down sometimes.