Looking for answers in the WRONG place

[Farrahlicious]

I know i haven't been around in a while. This is due to all the wonderful things having not one but TWO autoimmune conditions, disorders, call it what you wish. I have been diagnosed with both MS and Ankylosing Spondilitis. Wheeee!!
I cope with it every day and so do all of us that HAVE MS.(and the ones who live in Limboland, without answers)
I know it's very scary, and a lot of you have been living in Limboland for a while. Living in Limboland, not because you have decided you're not gonna do a thing about it, but because you have gone from Dr. to Dr. looking for answers, for a diagnose...
What i can't understand are some people that think this is a forum that has all the answers with just a question from whoever. WE DON'T KNOW IF YOU HAVE MS OR NOT!
I am sick of reading "my hand is numb... is this MS????" without even making an appointment with a Dr. We have problems, we support each other. We pay our MRIs, Dr appointments, try this and that drug. And you come with a numb finger or a tiny twitch in your pinky and you immediately assume it's MS??
PLEASE, make an appointment. If you're 100% sure you HAVE MS (for some reason, some people WANT to have something as terrible and devastating as MS)
MS is not a reason for a Pity Party. Yes, mom can make you chicken soup and turn you into a baby that doesn't have to do a thing. Us MSies have to take the kids to school, clean the house, do the grocery shopping, check the kid's homework even if some of us can't even relate numbers and letters. But we try. We try every day. Some of us are disabled and live in a country in which Disabled Only parking is reserved for rich ladies and their Maseratis, so no one would scratch their precious belonging. You get yelled at, stared at, people push you, cut in front of you on the line, all the **** that makes you realize that for some reason, in their eyes, you're a third degree citizen.
So see, MS is NOT  ride in the park. If you feel some numbness in your hand once, well, maybe you should shake it a little so the blood stream will move to your "MS" hand.
It's ok to be scared about certain things. But some people ask questions that turn out to feel like a slap in the face for all of us that are either diagnosed or those who have fought for years to get an answer
If you believe you have symptoms that scream MS: FIGHT. Go see a Dr. Go see another one. MS is a very expensive condition, both for your pocket, your soul, your family.
You DON'T want to have MS. Trust me, it's slowly costing me relationship. You don't wanna be the sick lady with a bunch of cats, sitting in your porch like Clint Eastwood in Gran Torino. You want to move, dance, laugh, enjoy.
We're all fighting to get all these things back.
So, go to the Dr. Don't look for answers online, don't fill your head with stuff you may not have. This is a forum where we come to have fun and vent. We're no Drs, and we can't diagnose you from a simple post. Get your behind to the Doctor. NOW!

[Lulu54]

Hi again Farrah,

Finally getting around to answering your admonitions here ....

In my day job at a local university I deal with young adults as my customers regularly.  They come in and ask the most inane questions most of the time.  I expend mass quantities of energy refraining myself from giving irreverent answers back to them.  Most of the time they deserve it, but I don't go there.  Its not a chance I care to take.

Why?  Because among that population there is always the student or two who is at the breaking point.  Often times its not the question-answer that they want, but validation and contact with others.  I don't have the magic powers to know which one of my students is the next one who is going to snap because they need answers and solutions and aren't getting them.  And often I can't give an answer, but I can always stop what I'm doing at the moment and listen.  At times, listening is the most powerful gift we have to give.  

In the past 7 years we have had two student suicides, both young men, who I thought I knew pretty well.  To this day I continue to wonder what I could have done differently or done more of to have altered their decision to end their lives.  The one young man always invited me to go outside and play ultimate Frisbee with him on the lawn - and I think of him as these days bring warm weather and new batches of frisbee tossers outside.  Could I have made a difference if I had stopped and gone outside the week before and spent more time listening?  The other young man sat behind me in class for a whole semester, masking the deep, dark depression that had sunk in on him.  Even the roommates of these two didn't have a clue.  

The same holds true for me here - can I make a difference for just one person by stopping and listening to the same question for the umpteenth time and acknowledging them?  To me its not a choice - everyone deserves to be heard no matter how inane the question may be to me.

Now if you were to start a rant about the ocassional person who asks a question, then ignores our answers, only to come back and complain and question  the same thing again - I perhaps would agree with you wholeheartedly.   But that's a different post.

be well,
Lulu

[jensequitur]

Yum....  Around here, we have Cowgirl Fudge, which is chocolate with chipotle peppers.  Delish!

Well, Farralicious, I sympathize completely with you.  I think that it must be very difficult to be worried about a symptom, yet not have enough money to go to a neurologist.  I don't think the people that post on here are hypochondriacs, but the Internet and internet research certainly enables hypochondriacs to be even more worried about their symptoms.

Of course, I'm the type of person to write off my illness until it really becomes a problem.  I went only after the symptoms started becoming distracting.  I had written off the numbness and the fatigue as normal symptoms of overwork.  When the dizziness and the tingling/buzzing started, I knew that something was wrong.  

Many times, I don't respond to a question like the ones you describe unless the person is obviously needing some information that they can't find anywhere else.  If it sounds like the person is just reaching, I leave them alone!  

[Fluffysmom]

Candy? Maybe you're like a Xocolatl bar; sweet, but with some fiery hot peppers included!

Kathy

[Farrahlicious]

Dear buddies,
I'm sorry if i came off a little extra blunt. Most of you who know me, have learnt how to "deal" with my tantrums and dark sense of humor.
What i was trying to do, in my very own MSy way (which you know, you may have great ideas in your head and then it all comes out as a big salad) was just to tell some people that are alarmed by the smallest thing and become obsessed with having MS. They tend to read too much, and, say, if we're talking about "phantom cell phone syndrome" their brains can be tricked to believing they have all these symptoms.
I wanted to scream "Wait! don't go absorbing other people's symptoms. Listen to your body. If your heart tells you there's something wrong, go to the Dr!" i know some docs are "steroid happy". Or just don't give you any answers. Again, if your body is grabbing you by the neck, telling you "there is something wrong with meeeeeee!!!! don't ever stop the fight.
My sweet limbolanders, are those who own a big piece of my heart. I am diagnosed, so the "to be or not to be" phase is over. But what about all those who are still fighting?
If the symptoms are worrying you, than prepare to give the fight.

I agree with you, Essdipity. This post was meant for those who, for some reason seem to want to have something. I just wanted to shake them. Those who are really terrified and don't know where to start will always have our support and, in my case, my very ladylike "get up yer butt! you have stuff to fight for!".

I, as you, as Quix, as all the members of this forum are here to encourage others in their fights. To offer a shoulder in their bad days, to laugh and to keep our friends happy. I believe there's so much we can do. Getting the guts to make that appointment should come from within. We will be here to help in any way we can, but we need these people to gather and build up that energy that takes the first appointment. We can't be in the room with them, but we're an email or a post, or even a note away from them.

I'm sorry if i woke up on my eeevel side this morning. i have been up since 3. I need open heart surgery and it's way too dangerous for me. Plus, my ribcage is fused.
so i take it all on you guys!! Nah, not really. I just wish for those dying to have something as horrible as MS, to just go outside, enjoy their families and life.

You know me. I am like some candy. I might break one of your teeth at the first bite, but in the inside, i'm just a soft marshmallow. I'm a softie.
♥♥
Farrah

[essdipity]

Hi, gal. Haven't seen you here in quite a while, and now you're back with a bang.

I do understand where you're coming from. It's important to have bothersome or worse symptoms checked out, and doctors are the only ones who can do this. So yes, go to a doctor, and don't try to diagnose yourself.

But not everyone has your vivid personality and go-getter attitude. Some people need a nudge. And some people become fixated, for whatever reasons, on small signs that really aren't abnormal. Most of these folks have anxiety issues and state that up front. They need reassurance too. Even though this indeed is a MS forum, MS doesn't exist in islolation. We all, even the healthiest of us, have other issues, regarding our health, and regarding our families and personal relationships. These things tend to intermingle, and the net net is often a very upset person. Life just does us to that sometimes. So we all need support and comfort, whatever our status.

Limbolanders are a special category. It can be so horribly wearisome to go to doctor after doctor, MRI after MRI, year after year. I know, because I'm a limbo graduate, which didn't happen until after 8 years of symptoms (with huge remissions, thank God) had taken their toll. It's not surprising that many take a vacation from the endless tests and doctors, only to return when they once again are miserable. That's human nature.

I've seen a few, but only a very few, posters here who I think wanted to have MS. I don't understand that either. But the vast majority are just in here plugging like the rest of us.

So I don't want to characterize people with sweeping statements. That doesn't allow for nuances at all, and life is full of nuances.

Even though I disagree with you on this one thing, I always enjoy your posts and just wish you were here more often. There are lots of newbies who'd love to hear from you, I'm sure, and the rest of us could learn a lot from you. So stick around!

ess

[jdhecaj]

Good Post Farrah. But I do want to point out that people are often looking for validation before they can proceed. I'm someone who needs validation...I'm taking an expensive medication because I really do have a serious chronic disease?

Some people are posting because they need validation that they really do have a symptom that is significant enough to see a doctor  & maybe even 2 or 3 if the first is not able to identify the issue. I think they need their belief that they really haven't been given an acceptable answer by the first doc before the will screw up the courage to go to the 2nd....

I have so much difficulty with recognizing the need for validation and the need for positive support, that I often  do not sound positive enough when I'm trying to helpfully validate. It's a fine line to walk for me. "Yes it really sounds bad, I've heard of some people that had cancer that started that way" or something like that, then I forget to say "but it's not very likely & you will be okay" Often times hindsight tells me I should have kept my mouth shut & my fingers still.

But I'm so glad you posted this. There is a board with docs and we are not it. We should not have to start each reply with "I'm not a doc but"
That should be understood.We do not diagnose. We validate & support. I don't think the doc's on the doc forum diagnose on-line either.

I think a lot of times we throw a rope out for someone to start investigating further, when they had no idea where to start looking.

I was treated for depression once. I did use prozac for a while and I do believe I needed it or I would not have gotten out of the depression hole I was in. I thought the doc threw me I rope & I pulled myself out. Same thing with the info people get from a support board. We throw our info for them to consider and investigate. Then they dig their way out of the hole they are in.