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.
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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Warm thoughts and regards,
Frank
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!
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?
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.
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.
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
Carpe diem! and here's a little gift for you: http://www.quotegarden.com/carpe-diem.html xoxo
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
HUGGGGGGGGGGGGG
Never, as others have said, give up on the meat circus. It's just a different act in the ring.
Give yourself time to adjust to the knowing and you will be back to your old self in no time...
http://www.art-of-getting-well.com/
http://www.art-of-getting-well.com/
I know this waiting game.. CMT runs in my family.
Rated for go ask Alice (Oryoki for her thoughts).
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.
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
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
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. :-)
HB: Actually, there is a psychological term for the phenomenon - reticular activation system. Good luck with your shoulder.
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.
I love you very much and I am sending you my best wishes and energy
Rated and shared
Always,
Ranger
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.