ZAP. Scream! ZAP! Scream! ZAAAAP! Scream!
I am sort of used to being electrocuted but I don't scream when it happens. I grab myself and hang on to ME till it passes. I must look odd, hugging myself. Hell, it hurts.
The first time it happened I thought lightening had come through the window while I was sleeping and struck my hip. I was paralyzed for several seconds in shock from pain alone. I had not yet been diagnosed with MS so I had a hard time explaining that one. Most thought I was having a bad dream. "Dreams can be intense", I remember hearing. I don't know who said that. Probably everyone, in some fashion.
It was so intense I could barely walk to the bathroom when I was finally able to get out of bed. My neuro believed me.
This is something I must take up with the Neuro in March. Who else can I call, WireNut? =p =p =p
Zaps come every time I cough. I cough all the time. Why do I cough all the time? Because I have a chronic cough. Why do I have a chronic cough? Because I have MS. And why do I have zaps in my chest? Because I have MS. And what do we do about it?
Drugs, baby.
But there's that 50% renal insufficiency problem. Why do I have 50% renal insufficiency?
Drugs, baby. (Betaseron, Copaxone, too many to list hahaha)
How did I become deaf?
Drugs, baby. (antibiotics, you didn't think they were dangerous did you?)
And why do I have dry eyes? (side effects of current meds)
Drugs, baby.
Getting back to the topic of MS meaning Multiple Screams...
Treating zaps means drugs, baby.
The irony.
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19 comments:
Why do doctors think some people are susceptible to MS? Is it an inherited tendency? I don't know anyone personally with MS but I hear one of my second cousins who is only in her forties has been diagnosed with MS. I think from reading the accounts of people with MS that it is a very severe condition to have. Did you know anyone else with it when you were growing up? It must be hard to be hit with all these symptoms. I read Harrod's blog from time to time and it is hard to read about the deterioration of her health due to MS. What I got from the info I tried to gather on Nicole is that she was upset with the condition and you having it which caused her not to take her own symptoms of damage from alcoholism as serious. I think you have been very aggressive in fighting this disease and also have been informative about what it causes you to feel to deal with it. These electric shocks sound not good to experience.
Gerry, there are autoimmune problems in the family. Mom has RA, Sjogren's, "a broken DNA strand" and we could go on and on LOL but I only know one person in the family with MS and she isn't related to me by blood. Her husband did become quite ill with Guillian-Barre though...bizarre. She was the first MS'er I ever met. She has severe PPMS.
Not all of us are affected the same way. Romney's wife has MS and as far as we know she is doing well. Of course she isn't blogging and saying stuff like "oops I wet the bed last night..." and I did read she was treating her MS with "alternative treatments" but Romney is against medical mj.
Go figure.
Nicole was more upset about my MS than I was but that is how she was, she would soak in everyone's crap like a sponge and drink to it. Too busy looking after everyone else instead of herself.
Women sometimes receive a diagnosis later in life because doctors (haha) think they are making up symptoms. The first doctor I saw in my late 20's for what was actually an MS symptom handed me a script for prozac. He said I was depressed.
He sits on the local MS Board, he must be really smart. =p
My Neuro thinks it's a combo of genetics, the environment, and bad luck. In other words, he says "we really don't know what causes MS". =)
Zaps I am familiar with. Nasty hideous pain. What drug are you going to take? Just curious, the docs offered me neurontin, but I said pass. I just say no to drugs ;)
Karen, I've already tried neurontin. I puffed up like a blowfish. I take topamax for nerve pain but it does cause kidney stones. I've had two. Heh, fun.
Lyrica turns my brain into oatmeal. Hmmmm.
I don't know. =)
ah i'm too suffering with the zaps... it's as if someone is holding a cattle prod hot shot thing and hitting me with it time and time again... eek
chronic cough? yep
laryngitis from chronic cough? yep
bladder issues? uh huh
we are quite a lot aren't we/
Sherry, you were damned near poetic about a decidedly nonpoetic topic. Not that that makes you feel any better, does it?
Judy
I'm glad you post things like this.
I have a cousin with MS, and she's the stoic type. "Oh, don't worry, I'm fine," and it's not really my place to push it.
But I do want to know what she's dealing with.
I take topamax too! To prevent migraines (two years without one, used to have them SO OFTEN). Haven't had a kidney stone yet..
Tell Zeus from me to leave you alone or if he has to visit at LEAST show up in person. I would beware of swans if I were you. >P Hugs.
Usually I don't read comments but this time I did. I agree with Peace B. and it has inspired me to write about my experiences and how it feels to live with my disability and how it has changed my life.
Thanks for your courage and honesty. For real, not for play...
Such a cruel irony: iatrogenesis, I think it's called, the negative side effects of drugs and treatments that are meant to make you feel better, but in fact can make things worse. Commiserations.
Oh yes, electric shocks. Often. Muscle spasms. Often. Numbness. Pain. Difficulty walking. Difficulty remembering. Bladder issues (I not only know where all the public toilets are I know which ones to avoid). Other things too, but I forget. Lyrica turns me into a space cadet. And only takes the edge off the pain. Chemotherapy worked brilliantly. For three weeks. Give us this day our daily whinge. But isn't it nice to know that we are not alone.
I wonder what alternative treatments Mrs. Romney is taking. I hope you are able to get these awful zaps taken care of soon.
A real catch-22 for you.
Every one of those symptoms sounds hard to live with.
Is there much research being done on MS, do you know?
Light and Love. Thank you for sharing your stories and struggles- you are giving us a gift- sharing your life with us.
Be good to yourself. xo
The few people I know with MS all have such wide varying symptoms, and different progressions. I'm glad you write about it and give us this inside look at a very perplexing condition.
PS-I have hyperthyroid, and about 10 years ago developed Raynauds. Living in Michigan doesn't help that.
Sometimes those problems develop into Lupus or RA, but fortunately I never progressed to that. Autoimmune disease is still a huge medical mystery, but significant evidence exists for a family (genetic) connection.
I will say prayers for strength for your journey. I cannot imagine. But, it is good that you post and make others aware.
Sherri, thank you. Cattle prod. Perfect. (although I've never tried one, glad you went first. heh)
Peace, you're the poetic one. I'm the one that posts in draft mode. All the time. You rock.
Thomas, you gave me something to blog about. HA. Watch for it.
Elizabeth, I take it for migraines too. I used to have disabling migraines so this was a "two for one drug" and I have only had one migraine since being on Topamax. It is the one drug I would hate, hate, hate, to give up. If Zeus shows up I'll tell him his wife Hera is about to take over Mount Olympus.
Hey Santa Mark I will read yours for sure. =)
Yes Elisabeth - I am built strange, I am very sensitive to side effects. Even "natural ones". Couldn't even handle priobiotics (hahahaha) that the GI Doc told me to take for colitis. Yeah..right.
Elephant, heh - which bathrooms to avoid.... you mean ones like port-a-potty, gee why can't anyone figure out it doesn't work for MS'ers? I am not being a snob. I can't goooo (as in, equipment shuts down) in there even when I need to use it so if I get stuck on a mountain pass with only port-a-potties available, God help me.... TMI, TMI, but that's MS at work.
Anna, I'm sure it "vitamins and supplements". She does not have a severe form of MS (that is visible - I may be speaking out of turn here) or maybe she's a closet medical MJ user LOL, I do not know... if she becomes First Lady maybe she'll talk about MS. This is not an endorsement.
Jenny, I think research seems to being focusing on "disease modifying drugs" rather than finding a cure. There's more money in managing a disease than curing it. Suppose they found a drug/vaccine/treatment that cures MS... that means all the "treatments" go away. Copaxone was 32K a year! Plus add Topamax (it's $800 a month generic) and all the other crap I take and you can see it would make pharma very unhappy if I was suddenly cured. (multiplied by all the other MS'ers)
Danyell, thank you. I try. I do. =)
Lou, I'm hypo. Unless they give me too much then I'm hyper. =) Raynauds is painful. I don't have it but my hands and feet are always cold. I stick them in front of the heater to get 'em warm or grab the daschie and use her as a bun warmer. (she doesn't like that) Everyone runs around in short sleeves and I'm covered up like an Eskimo.
Hi Hattie, good to see you again. Thank you... I try. =)
Great comments. Oh, the zaps. Mine were worse in first year after DX, 21 years ago. They had no meds for it, not any clue what caused it. (except MS) People need to know everyone has unique to them symptoms because, well, just think about it--THE CENTRAL NERVOUS SYSTEM--that is what MS attacks and that is EVERYTHING that makes your body work from your head to your toes and anything with nerves. Sooo...the 'experts' are tired of us. They can't figure MS out and are tired. I can't blame them. I had/have NO ONE effected by immune systen disorders or MS, and I know LOTS of my family going back generations. A trauma to my head started my loaded (genes) gun to fire-MS. Side effects...sigh. Talk about between a sick and a sicker place.
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