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My doc tells me could have multiple sclerosis

heidiho
March 9th, 2005, 09:45 AM
So my doctor calls me at work to go over my mri and tells me they found fluid in my spine which could be m s,i am freakin out,does anyone know about ms???????????I know nothin about it,i have to go to a neurologist..

raingirl
March 9th, 2005, 09:48 AM
I was tested for it, but turns out I had scoliosis actually, which was compressing my nerves!

Here is a website that I found had lots of info when I was freaking out about it. http://www.nmss.org/

Schwinn
March 9th, 2005, 10:16 AM
I know little about it. My aunt has a neighbour with it. But also keep in mind your doctor may be giving you worst case scenario, so keep your hopes up. It may not be that. You don't want to worry yourself sick, either.

sammiec
March 9th, 2005, 10:17 AM
Oh Heidi! I am sorry to hear that! ((((HUGS))) hopefully everything will turn out once you get a visit and see what's going on.

A dear friend of mine, her younger sister was diagnosed with MS 2 years ago when she was 21. It's something that you can live with for a long time. It may require that you have loved ones close by that can help you should your condition deteriorate to the point where it's difficult for you to control your limbs. I don't mean to freak you out, sorry if I am.

Montel Williams has MS. He's been living with it for a number fo years and you would never know. There might be some information on the net about it and what he's done to overcome his battle. I will look for it for you!

Please, keep us updated! :)

Schwinn
March 9th, 2005, 10:21 AM
I forgot about him. I think he was diagnosed in the late '90's, and so far he's only had bad ratings. His production company is called "Move Mountains", or something like that.

sammiec
March 9th, 2005, 10:23 AM
K, here's the Montel Williams MS Foundation hompage. They have information on what MS is, and a bragging section of what awards he's won for his work.... :rolleyes: The information part is good...

Montel - What is MS? (http://www.montelms.org/about_ms.asp)

Here's the MS Foundation (http://www.msfocus.org/). There is A LOT of information in those pages.

Please, don't overwhelm yourself. You need to concentrate on the fact that this is more then likely the worst case senario, just like Scwhinn said... but it's best that you know some facts when you go and talk to the doctors about it.

I'll be thinking about you Heidi!

Princesss04
March 9th, 2005, 10:35 AM
Heidi you will be in our thoughts and prayers. That is what the doctors always do they have to give you the worst case because if something was to happen than they would be in trouble. So do not get to upset over it until they are 100% sure that is what you have. There is nothing that will change if you worry about it if you have it than you do and go from there. Worrying will only make everything worse. I will be praying for you! :)

CyberKitten
March 9th, 2005, 10:55 AM
I have a brother in law with MS. It is a degenerative illness - catches up on you over the years. I hope that is not what you have - in fact, there are so many differential diagnoses that you may have something else that looks like MS. The MS Society has info here:
http://www.nmss.org/

For some reason, it affects adults usually in their prime. (More women than men) My bil had to give up his work as an engineer and he has trouble walking. It is not a fun illness. There are many new advances though - and clinical trials so treatment is better now that it used to be be. Still, get another opinion!!!!

I hope you do not have it. :grouphug: And if it is confirmed, you won;t be alone and there are many new innovative things you can do.

heidiho
March 9th, 2005, 11:02 AM
Thanks for all the info,he did tell me it could have been cause the mri did not come out the best,he said it is not for sure,that is up to a neurologist to tell me,but he calls me at work yesterday and tells me this :sick: :sick: :sick: ,i cannot understand that,why tell me when i am at my job,i left here freakin the f*** out,and still am,he is supposed to call today with a # for a neurologist..Thanks again for those links,i will be lookin at all of them..If he only knew what a worry wart and stress freak i am i dont think he would of told me that...

badger
March 9th, 2005, 11:05 AM
Heidi, perfectly healthy people are having annual MRI's as part of their check-up, sometimes the employer even pays for it, and apparently it is leading to huge problems with false alarms. The guy reading it, who may or may not be any good, sees something suspicious and all hell breaks loose, more tests, biopsies and then, well, it must have been a shadow, the way the person was lying etc. So unless you've had a spinal tap or have seen and spoken to a competent neurologist, odds are you're completely fine.
Talk about being ruled by machines - makes me want to run for the woods..
Oh yeah and DON'T read the links. Turn off the computer and go for a walk (it's -25C here in Montreal so you may gloat).

heidiho
March 9th, 2005, 11:09 AM
No kidding,i am going with you.like i said yesterday i might just say screw it all and bail to Fiji.... I am gonna try to get an appt asap,i cannot deal with not knowing for sure,everyone keeps telling me no way do i have it,but hey people get it,and i could be one of them,so we will see.

CyberKitten
March 9th, 2005, 11:09 AM
If the diagnosis was made simply on the basis on an MRI, I would get a second opinion for sure. And MS is not an illness you want your employer to have records on. My brother in law had to get a lawyer to deal with his company - and he'd been a veteran of this firm for many yrs. See your own physician and get a referral to a good neurologist. MS is usually only properly diagnosed through a series od tests and it takes mega time (sometimes frustratingly so) to know for sure.

I too find the manner in which you were informed of this illness most bizzare and unprofessional. SEE YOUR OWN DOCTOR!

twinmommy
March 9th, 2005, 01:07 PM
Oh yeah and DON'T read the links. Turn off the computer and go for a walk (it's -25C here in Montreal so you may gloat).


Yup. Get off the computer. You'll only make yourself crazy with "what ifs" and other possible scenarios.

Wait to see your doctor.

Deal with what you KNOW not what MIGHT BE...


Breathe.

You don't know anything yet, other than a tech's interpretation of your MRI results which could be a myriad of things!!!

((((hug)))))

Good luck and try not to worry!! ;)

heidiho
March 9th, 2005, 01:30 PM
Twinmommy that was good,i am trying to not think about it,i went to my ins website and found a neurologist near my house ,i left a message just waiting for them to call me so i can get in there...Trying to think postitive,i just think why would he have told me that if it wasnt that,maybe so he made sure i got an appt quickly,everything is running throught my mind right now,,,,,

LavenderRott
March 9th, 2005, 01:41 PM
When I was pregnant, one of the bloodtests was positive for a major genetic complication, the name of which escapes me right now. So my doc calls me at home, explains to me about this genetic issue, and has us make an appointment with a geneticist and to get an amniocentisis done.

We go to the geneticist and they tell us that if this is in fact true, we will have some major decisions to make, as this complication is one that is "not compatible with life" meaning that if my child is born alive, it will not live for very long at all. There would be MAJOR deformities and the child - if it lived beyond a year would have no quality of life at all.

Quinten is 7 now and a beautiful young man. Smartest in his class and already showing signs of being smarter then his honor roll older sister. He brings me great joy every single day.

Needless to say, the test was dead wrong. Yours could well be too. Don't panic. Read the links (after you calm down a bit) so that you know what questions to ask. And remember, great strides are being made in the medical field every day.

heidiho
March 9th, 2005, 01:56 PM
I know,i just called the Barrow Neurological Institute out here,it is like world renowned for how great they are,they return messeages within 24 to 48 hours,which seems to be the case,cause i have called a few places and they say the same thing.......I am probably panicking for nothing,but that is how i am,,,,,,

twinmommy
March 9th, 2005, 02:08 PM
We are all like that to some degree, who cannot attest to thinking "CANCER OH MI GOD" on finding a small bump...not to patronize or make light of your feelings at this point.

I am sending you nothing but positive thoughts ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

:thumbs up :thumbs up :thumbs up :thumbs up :thumbs up

Just don't start reading into the way they handle things, say things, or how long it takes them to do things, like phoning you back. You'll drive yourself crazy.

(((((((big hug)))))))
keep your chin up!!

heidiho
March 9th, 2005, 02:19 PM
Thanks....Positive thoughts i am trying to think

CyberKitten
March 9th, 2005, 04:27 PM
I sometimes think it is human nature to panic. You really do not know anything verifiable yet. This is just one test - and one test in diagnosing an illness like this is nothing!! (even if it an MRI - believe me, MRI's are highly overrated. Give me a scan any day :) ) (But that is from a pratitioner point of view - it is easier to have an MRI as a patient than say an old fashionmed myelogram). Also easy for me to say since as a patient I have lots of hardware in my spine so MRI's are out.

Go to your own doctor , get a referral to a good Board certified neurologist (PM me if you want reccommendations - my grandfather was in that part of medicine and I know who the good ones are in Canada and eastern US and midwest anyway). I also have a close friend who is a Harvard trained neurologist (works with me so he is a pediatrician but he knows everyone). No doctor would give you a diagnosis of MS based on one MRI. The more I think about it, the more I think you need to report this tech to the Hospital and talk to the Patient Services rep if they have them there. (Usually a nurse who helps patients to get through the bureacracy of hospitals and health care). He had no business calling you if he is just a tech - the report should have gone to whoever ordered it and they would order other tests before alarming you. (If your employer ordered the tests tho, he may know something about them that you and certainly I do not).

Please be careful with this diagnosis with your employer. Businesses are supposed to be compassionate but alas, it is a tough world and many are not. Whatever you do, get tested on your own terms and by your own doctor and then it won;t be your employer's business unless you cannot do your work.

All these negative thoughts aside, work with what you know - think positive and take it easy. You have not really been really diagnosed with anything yet. Techs (annd docs too for that matter, lol) can be wrong. MRI's can be sometimes complex to read and you don't know what this tech's background is.

Take adeep breath, be good to yourself and don't ju,p tp conclusions!

heidiho
March 9th, 2005, 04:36 PM
It was my doctor who called me at work,he is in internal medicine,he called me personally,he did say it could be a bad mri,not to panic,but he was reading what the resluts were from where i got the mri done,that is why he didnt want to say much more cause he doesnt know....I lm with the Barrow Neurological Institute here,it is one of the best in the country,so that is where i am at,they said it could take 48 hours before they return your call..

chico2
March 9th, 2005, 04:48 PM
Heidi,I think we all know how"freaked"out you can get :D but I bet you this Doc worried you for nothing,he should NEVER have given you this kind of news over the phone...
Whatever happens,you'll be able to handle it,although I hope it's nothing serious.Life throws us for a loop sometimes,but we deal with it and often become better human being because of it.
You are a young beautiful girl,don't worry just yet,lets wait and see,until more accurate tests have been done.
Also,you know we are here with moral support...Good Luck!

heidiho
March 9th, 2005, 04:56 PM
I am a little disturbed as to why someone would tell u that on the phone,maybe he was trying to save me a co-pay,i dont really know...I missed the girls phone call just now,trying to get in asap, i will let u know ,thanks for all the positive words,it helps alot....... :crazy:

CyberKitten
March 9th, 2005, 04:57 PM
I agree with Chico. I would never call a patient - or a parent in the case of my very young patients - and inform them they have cancer, Especially based on say one blood test or an MRI.

For some reason, this reminds me of when my grandfather was diagnosed with Hodgkin's Disease. His family doc - forgetting my role as granddaugher - offered me the microscope and went on at great length about what unsual cells these were, was it leukemia or HD? What did I think of the cellular content? (I was another emotional plane -) He had just forgot though - and it was an unusual blood sample with intriging cellular activity - but I was seeing someone I loved dearly more than cells and blood.

So maybe your family doc thought you wanted the information asap. Still, he should have asked you to come in and see him. And waited for more tests - most MS diagnoses are made after an indepth series of tests, sometimes even as an inpatient.

I hope you get into the Institute quickly and it is good you think highly of them.

I will keep thinkingh good thoughts and sending them your way. In the meantime, enkoy yourself and remember it is not a verified diagnosis yet!!

heidiho
March 9th, 2005, 05:17 PM
Well one place i called called back,but they are a Pain Management Center and there neurologist only specializes in headaches,so i am gonna stick with the Barrow place,i will wait til they call back,my dad had epilepsy and had his brain tumor removed there and never had a problem after,and they have a whole dept for ms,so i feel good about them...

Iggette
March 14th, 2005, 05:24 AM
Oh Heidiho, I am so sorry you are experiencing this. I too am a worry wart and famous for thinking "what if".
Take the others advice and keep calm until you get all the facts.
I wish you luck!! Sending positive thoughts your way :angel: :angel: :thumbs up :thumbs up