MS Epidemic?

Why is it that MS seems to be becoming an epidemic these days?  I mean, some people tend to jump immediately to the MS conclusion upon having any vague symptoms that could fit into several other categories?

Just curious...

Any thoughts?

[CtResident]

In Dec. I had vertigo, went to a walk-in clinic. I don't know if it was part & parcel of the vertigo, but I was in a really touchy mood, not at all my pleasant & polite public persona. (sorry, alliteration not intended!)

So when this gentleman started checking my reflexes, and noting hyper issues and mentioning neurons and neurological testing and MS or fibromyalgia, I was not happy at all.

When he left the room, I was downright rude about these suggested anomalies! I told my dh, "what is he, some kind of neuro-wanna-be?! If he flicks my fingernails hard enough, he'll get the response he wants. He's trying to MAKE it happen! Do things several times and you'll get the desired result!"

The next day was Christmas so I set this incident aside. (The vertigo was only a few brutal hours.)

The following day I researched this MD stuff. Umm, no. Not muscular dystrophy.

Oh yeah, MS! And low and behold, it really matched what I had been going through for many years.

As of now, I am not diagnosed. It doesn't get handed out freely, this diagnosis. There are many tests, many mimics to rule out.

I do wonder if it's the internet that makes it seem like so many folks have MS?

Suzanne

[monotreme]

There is something on a MS website (I believe the MS society) that says that in every hour of every day someone is diagnosed with MS.

We seem to live in an era of chronic disease.

Elaine

[ToughCookie]

Hi.

Thanks for your reply.  When reading it, I had to laugh because you sound just like me 10 years ago!!  I fought this MS thing tooth and nail, and they had to PROVE it to me.  We can be stubborn sometimes, can't we?  
I understand that it is a disease that mimics many others, but back in '98 when I was diagnosed, it didn't seem to be such a long, hard process.
I do agree that the internet could very well have a lot to do with it.  It is usually a good thing to educate yourself on your own health condition, but it seems that some people get 'hypervigilante' with everything that is going on in their bodies.

[spastic]

Hello and Welcome.  

There are so many mimics and for those of us who don't have a clear cut case of MS, we just want answers.  That is all I want at this point.  I am tired of getting poked and prodded.  I never even considered MS a possibility until my rheumy mentioned it.  What I have found in my quest for answers is that there are a lot of Dr's who will not even consider it until you have a certain amount of lesions in the typical area.

In the meantime, there are a lot of people who need treatment for MS but cannot get it because the Dr won't commit to a diagnosis.  This is just my opinion on the matter.  I might sound a little touchy and please forgive me, I have a hip in contracture and it is hard being a merry person when I am in so much pain.  I usually am pretty jolly.  Take care hon.

Spastic Ada

[ToughCookie]

WOW!   I didn't know the numbers were that high!

[ToughCookie]

Ada:

You say something very, very interesting....I have found, several times over the years, when speaking with many undiagnosed MS patients, that the doctor's were the ones that lead them down that road in the first place!!  Just to turn around (after mentioning MS multiple times) and not commit to a diagnosis!
I am so sorry that you are so frustrated and in pain. It really breaks my heart to hear about these situations.
I really hope you feel better soon and get the answers that you're looking for.

Samantha

[Rena705]

Hey Samantha...I was "diagnosed" in 93 with MS via MRI and LP and then last November had another MRI that was "positive for MS" and they are saying that it is "inactive" and therefore I am not eligible for the disease modifying drugs!

They diagnosed it twice but won't treat it!  What's that all about and how many of us are there out there I wonder?

Rena705

[ToughCookie]

That is just horrible!  First of all, MS is never 'inactive', if I never hear that comment again, I'll die happy!
Back in 1993 when you were diagnosed, what did they do for you then?  Were you ever on DMDs?
Also, have you been with the same Dr's the entire time? Do you have an MS Specialist in your area?

I believe that there are many people out there in your same situation and it's pathetic.

Samantha

[spastic]

That is funny how that happens when doctors mention it.  I will admit to researching it to death after being told about the possibility.  But I get so frustrated when you get referred to the latest and supposedly greatest neuro in the region to be told you have seizures judged basely on where your lesions are.  I had 2 normal EEG's so I was pretty bent when he told me that.  In the meantime I am seeing another neurologist.

I am glad that you are here, you opened my eyes to something I didn't notice before.  Thank You.

Big Hugs,

Ada

[wingnut19]

SO TRUE!  I was taken by the hand by my Neuro directly to the MS door many times--just to have him turn around and say...."I'm not sure".  On our first meeting, he mentioned it in the first five minutes and in every damn appointment since!

Ada:
Funny thing is (not funny, but ironic)---I had 2 'abnormal' EEG's and he said they were 'nothing'!!!   Confusion sets in, as usual....LOL

Tammy

[CtResident]

Oh yes, when I went to my pcp to get the referral to the neuro, the pcp said to be careful not to self-diagnose! I replied "you're right, I won't!"

Then I stewed about it for a few weeks until my post-neuro followup. I cleared the air right at the start and told him that, by the way, one thing he'd mentioned last time was to not self-diagnose; just for the record, *I* never thought of MS, it was the PA who used the phrase, it's not like I sat around looking for something to research. My pcp is a good guy and he was nice about the whole thing.

(And now I'm waiting for the Yale MS clinic to call me for an appt.; let's hope there is light at the end of this tunnel and NOT a train coming right at me, lol!)

Suzanne

[Rena705]

ha ha ha...are you related to Quix?  She gets equally upset when she hears the word "inactive"! ha ha

I presented with Grand Mal Seizures so they put me on anti-seizure meds (Tegretol 400mg/day), never even heard of DMD's!

I was with Dr. H. when I presented with Seizures, it was Dr. W. that diagnosed me and sent shivers down my spine, then I was under Dr. M's care until October 2006 when I had an attack of severe ice pick pain in my right temple and my left eye was drooping.  Dr. M. treated me with IV Solumedrol and weaning Prednisone as Dr. M felt it was a relapse of MS.

In Feb 2007 I had another attack and Dr. M said she couldn't see me for 4 days...I couldn't wait due to pain and went to dr. at my gp clinic and she referred me BACK to Dr. W. whom had diagnosed me with MS and still sent shivers down my spine.

Dr. W. diagnosed me with Paratrigeminal Neuralgia and stated that he would treat me for this if I agreed to not see anyone else regarding this.  I was in pain...I agreed...I needed the drugs...he treated me with IV Solumedrol and weaning Prednisone!  I was under this moron's care until Dec. 2007 when I was able to "brown nose" my way back into seeing Dr. M (she had her panties in a knot because I went to Dr. W when she said she couldn't see me back in Feb. 2007)

So I went to see Dr. M in December and she said that she feels that what I was suffering from starting in July 2007 is a drug overdose of Tegretol and Neurontin and that my MS is inactive so I do not fit the Criteria to Qualify for the DMD's!

That's my story and I am sticking to it!

Rena

[wingnut19]

My thoughts EXACTLY, Suzanne.....***Choo-Choo***

The more I think about that, the more it makes me mad......Why do 'they' lead us down that road, and then ask (ever so arrogantly)--"Where did you get the MS idea?"

[Nerve_Wrecked]

Here's my philosophy...

MS is the #1...number ONE neurological disease of "younger people". So people who are in the "usual age catergory" for MS, who have neurological symptoms aren't by any means, outside the realm of possibilty.

People who are ill with an unknown disease (of any sort) want people to connect with, people who understand how they feel.

I don't THINK MS, I don't SUSPECT MS, I'm not qualified to make that call. Two doctors have said the words "Multiple Sclerosis" to me, and since having done my research, I realize they share some symptoms in common with me, so I hang out here, until I know what IS the problem.

It's always nice to find someone who understands the weird or painful or outright scarey sensations that go on when you have a neurological condition.

Christine
(un-dx)

[wingnut19]

AMEN!!!

[Quixotic1]

MS is estimated to occur in about 1 in 750 people in the US.  But, it varies largely by region.  The incidence is now stated at 1 in 400 in Maine, as high as 1 in 250 in parts of Canada.

It is really quite common.

Quix

[ToughCookie]

bumping this topic up once again

[jensequitur]

I'm going to plug (again) this cool article I found on a book about the auto-immune epidemic.  At first I thought the internet just enabled us to identify these weird symptoms... but experts are saying there's a growing epidemic of auto-immune diseases, like diabetes, Crohns, myasthenia gravis, MS, and others...

"Norwegian epidemiologists, for instance, argue that rising rates are "due to a real biological change of the disease" rather than being caused solely by better diagnostics and are concerned by the higher occurrence of autoimmunity in urban than in rural areas. Swedish and German researchers concur that enhanced diagnostics alone cannot explain today's significant increases in MS."

http://www.****

[Want to feel well!!!]

I just started reading the book this article comes from  (The forward is written by
Dr. Douglas Kerr, Associate Professor of Neurology, Molecular Microbiology and Immunology, Director of the Johns Hopkins Transverse Myelitis Center and the forward alone is interesting.)

What I've read so far is very compelling.  It's like the "Inconvenient Truth" of the medical community.  

Of course, there are other opinions, but somehow the dots conserning autoimmune disease need to be connected.

Wanna
    

[HARRYBEADS]

  I was Dxed with probable progressive last month and after asking how come you can say that after just a neuro exam he said did you see your responses to it, ya wanna see them again... plus your history?
  Now I live in the sticks and 5 people in one mile of my house have been Dxed in the last few years plus the person I bought the house from wife died from it.
Dx has been a long four year process now for me, happy they have a name for it now, maybe.

Harry

[ToughCookie]

My heart goes out to all those in this forum who are diagnosed, undiagnosed, almost diagnosed, and trying too hard to be diagnosed.
I understand the true epidemic and believe in the studies, but somehow am still extremely uncomfortable with those who are "looking" to have MS at the very first tingle, buzz, dizzy spell, and so forth....
Trust me, the lines have been extremely blurred and its a shame because people that really need the diagnosis get overlooked due to others that actually "look" for it...

[essdipity]

Hi. I've never come across anyone 'looking to have MS.' I think that's kind of harsh. The big majority of people who post here have long histories of unexplained symptoms and have had the runaround from a bunch of doctors, some of whom have been downright snotty. The folks here may not be representative of the MS community as a whole. No doubt there are huge numbers who have some kind of symptoms, go through a few tests and receive a straightforward diagnosis, and these people may not be motivated to seek out an MS forum.

Others, including many here, are totally frustrated. They have the advantage of some computer savvy, so take advantage of the Internet to find out more when the medical system isn't helping. A very few latch on to a single tingle or buzz, but most of such folks acknowledge up front that they also have some sort of mood disorder going on, which leads them to worry about everything. Nevertheless, even some of those people turn out to have MS as well. It's certainly possible.

Are you saying that people who do have MS can't get a diagnosis because of others who don't? How is that possible?

ess

[Want to feel well!!!]

Let me be devil’s advocate here and comment that what I think TC might mean is that once a patient hears a doctor mention “MS” he/she is justifiably frightened, and once a doctor rules out MS, the patient is scared the doctor is wrong.  (TC, correct me if I misunderstood.)  

But, as we see by many here on this forum, this CAN be the case.  Because the symptoms and testing might still point to MS, a patient is fearful that it is MS and continues searching for a doctor who will help.

No one wants MS, or any of its mimics, but I believe many of us (myself included) are driven by the fear that if I do not get treatment now, how much more damage is going to occur within my body.

I am confident that I do not have MS (Praise the Lord) but I do have something wrong with me.  Once MS was ruled out, on to the next possibility.  One doctor asked me, “What do you think is wrong with you?”  I said if I knew that I would not
have see you.

If the lines have been blurred between a diagnosis vs limbo, I would not blame the patient sector.  Personally I believe the lines have been blurred by a medical community that does not look at the big picture the obvious rise in autoimmune disease.  

Okay, I’m getting down off my soapbox.

Wanna

[cjacks]

Wow  ,  

I haven't been feeling very well , so don't respond much . This brought me to tears..

Are you ******* serious ??  So I shouldn't be searching to get the answers to this very debilitating illness I have because  I'm taking up space in the dr.'s offices and muddying the waters for THEM...  And the TRUELY sick people aren't getting the proper attention.

  Let me get this straight ...  It's my fault that there are so many incompetent dr.  There are just too many of us mellingers around , probably wearing the poor doctors to a frazzle ...  

Guess it's time to get off this train and find my own ice flow....toot  toot

Should we find a new forum    Just the purest ( true MSers ) for MS Forum , documentation needed..  

(((H  j   U   o   G)))    <----- giving myself a hug

[Want to feel well!!!]

Who's post are you referring to?

If you are referring to my post, you didn't read it correctly.

Wanna

[Want to feel well!!!]

And as far as finding a new forum, I think you know this is one of the most caring bunch of people ever!

So sorry to hear you are not feeling well, but glad you have been hanging around.

Wanna

[cjacks]

Wanna

No it was not your post it was TCs ..  I don't type fast enough to to have responded to you .  TC got my dander up,  I could not stay polite and quiet.

Jo

[Want to feel well!!!]

What I mean by "But, as we see by many here on this forum, this CAN be the case," the doctors HAVE been wrong and the patient continues to look for a doctor who finally gets it right and accurately diagnosis MS.  I blame the medical community, NOT the patients.

Sorry if this confused you, but I certainly would never take a stand against the patient!

Wanna


    

[Want to feel well!!!]

Phew...

Again, sorry you have not been well.

Wanna

[wingnut19]

Good Morning!

I sent toughcookie an email last night, because frankly, I WAS P-I-S-S-E-D!!   It seems that we all misunderstood what she meant by her last post......
***Because there IS an MS "epidemic"which is proven by factual data all over to world that people are fearful that they DO have it---and it's usually their FIRST fear.
For example, Jane Doe wakes up one day with a tingly feeling in her right arm, perhaps accompanied by a little numbness in her shoulder---- she goes "ONLINE" to do some research....types in her symptoms and BANG-MS pops onto her screen.
She then reads through the other symptoms and says to herself, "Wow, I had some major blurred vision a few years ago, and vertigo"....Her fear heightens.  
She continues down the list and finds the "pins and needles" symptom, and thinks, "Gee, I had that 6 months ago, too!"
Jane Doe goes to her doctor, is subjected to a battery of tests and finds out that she has borderline diabetes, a bulging disc in her neck and chronic sinusitus and she needs glasses.
Yes, it's a possibility, and yes it's a terrifying one, but even BEFORE going to a doctor
a lot of people automatically think they have MS.  ****
She was just trying to say that as much as the Internet helps, it can also hinder.
Honestly, everyone---some of this is true--I've seen it in the Neurology Forum....Go there some time and read some posts and you'll understand where she's coming from.
Now please, DON'T get mad at me for using a female as an example, I just did that because most of here are that....  :)
I still don't know if I explained things right, but she asked me to try because she probably won't be coming back here anytime soon....if ever!

[Want to feel well!!!]

Given that most, if not all of us, have Cog Fog and sometimes our written words don't necessarily reflect what we really feel, misunderstandings arise.

TC is here because she is looking for answers and support.  I hope she doesn’t leave.

I for one am certain I have unintentionally put my big ol’ foot in my mouth at some point here.

Wingnut, you are a very sweet person, and your above post proves it.

Wanna

[wingnut19]

Thanks honey bunches!  You're awesome yourself!  

I was afraid I would be banned for posting that!  :)


Tammy

[essdipity]

If TC actually meant what Wingnut says, her posts sure don't support that interpretation.

In any case, we are left with no explanation for her conclusion that MS wannabees keep real MSers from getting a diagnosis.

ess

[wingnut19]

I would just like everyone to kindly remember that I am not ToughCookie, I was somehow 'nominated' to try and clear things up.....

How about we put this issue to bed?   I know my body and what I've been through and so do all of you, and nothing or nobody will change those FACTS.

Tammy

[essdipity]

I'm certainly not blaming you for TC's thoughts as expressed here. If she wants to clear this up on her own, that would be fine.

ess

[nette573]

Are you diagnosed?  Right now I cant hardly understand the question!  It just seems very ugly  to say it the way you did.  I have been wondering what in the world happened to me a year ago may.  They thought I had a stroke but...it is on the wrong side. I have been going thru a bunch of testing.

Do you have ms or are you wondering what is wrong with you?
Lynette

[Want to feel well!!!]

Thanks to Jens I bought the book and it is wonderful.  Highly recommend to everyone!  Jensequitur hit a home run finding the article and telling everyone.

I hope this book gets mass exposure.  It is an eyeopener.

Wanna

[peastalker]

Poor way to post your question! You make it sound like you want MS all to yourself. Well, you can have mine. The worlds population is growing at a rapid pace and with the advancement of the internet and telecommunications technology, more information is bound to reach the millions who have wondered What the heck is going on with me.... What would you consider a vague symptom. Spasm, numbness, double vision,   pain, loss of balance, hearing loss I could go on but MS has a shopping list of symptoms.So if someone is searching for answers, let them come to their own. Remember there is no definitive test for MS, only speculation based on a Medical Community that states it is not an exact science.

[HARRYBEADS]

tough cookie

  I'll appologize for taking time from the Medical Service, but for the last four years I have been having extreme pain in my legs accompanied by weakness, issues urinating, crapping, balance, recalling yesterday, staying awake etc. so my GP sent me to an expert in neurology that tested me and then said probable MS has it wrong. But first please allow me to spend some more time that you feel should only be available to those that are already diagnosed and have the proper testing, that may take years to complete if it is first not obvious.

  say it the wrong way and bang we'll jump on ya .LOL


Harry

[Quixotic1]

Well, this has certainly touched on a topic that hits many of us in a very sensitive spot.  I actually understand Toughcookie's point that Neurologists may become jaded when they come across a very anxious person who seems firmly convinced that they have MS, despite very few symptoms.  Health hypervigilance does occur and will ruin the quality of life for the person with it.  For those of us with increasing disability it is sometimes difficult to listen to someone with a minor tingling somewhere, perseverate on having MS.  But, the reality IS that the person with a minor tingling somewhere MAY INDEED have MS.

I don't think these people - who do exist - are the cause of the difficulty others have with getting a proper diagnosis.  I don't believe this causes the jaded and dismissive attitude of the neurology professional and I do not believe that these people use up resources preventing others from getting to good care.

I think this topic is pretty well-done.  I hope TC did not mean it in quite the way it was perceived.  However, it does show what a painful topic it is to those of us who have struggled for validity and for an appropriate attitude (read that "work up") of our symptoms.

I would like to see this closed, as emotions are running high.  But maybe restart another thread discussing the article and book mentioned above on the struggle of so many with autoimmune diseases to get creedence from the medical profession.

Deb61 - would you start of new thread (Post a Question) and Copy and Paste your post from above to carry on this part of the conversation?  I do have to ask that you not bring over whole paragraphs of something written by someone else, even though you fully credited it.  If you could give the site/cite and paraphrase the info it would be better.  This is by request of MedHelp to avoid copyright infringement issues.  Then MedHelp will delete your post above to avoid the problem.

This is truly a discussion worth having.

ToughCookie - I invite you to stay with us.  I doubt you intended to say what many people here understood.  We would like to hear your story, too.  You sound very frustrated.

Quix

[Heather3418]

I agree with Quix.  This thread should be ended NOW.  Please...

[Deb61]

Please see my new thread with the same name "MS Epidemic".  Quix wanted me to repost my response with some revisions for positive discussion.  

I agree with Heather.  Let's close this particular thread NOW.  We're tearing each other apart instead of building each other up!

Deb