Why is it so hard to get Dr.s to say MS ?

[Guest guest]

I have been reading the experiences of a lot of folks here that

mirrors my experience in having all the symptoms, but not having the

diagnosis of MS. I won't recount my personal experience from the

past, but I will tell of my current situation.

In June the vision in my right eye went from 20/15 to 20/50 with

floaters, light flashes and a spot that was blind almost overnight.

(I think it is getting better, now!) I have seen a retina

specialist, a neorologist and had ERG's done at a Retina

Foundation. There is no physiological explanation that can be

detected from examination. I had a MRI that showed new lesions and

the ERG shows abnormal readings in the area that corresponds to the

blind spot. It has been nearly 6 months of this. Yesterday, I did

another round of the ERG and physical exam. The Optho said it was

probably related to MS.

What is the reason that medical people won't say, it must be MS? I

have had MS symptoms for over 25 years. The neuros and MDs have

almost always said, " demyelinating disease " and " could be MS " , but

never " it looks like or is MS " .

Any thoughts are welcome.

Peace & Love,

[Guest guest]

Strange, the first time my daughter had her MRI and it showed lesions, she was

told right off she had m.s...If you have lesions in the brain, isn't that the

most common sign that m.s. exist. Guess sometimes you just gotta ask " why

don't ya just say it "

natrite3120 wrote: I have been reading the

experiences of a lot of folks here that

mirrors my experience in having all the symptoms, but not having the

diagnosis of MS. I won't recount my personal experience from the

past, but I will tell of my current situation.

In June the vision in my right eye went from 20/15 to 20/50 with

floaters, light flashes and a spot that was blind almost overnight.

(I think it is getting better, now!) I have seen a retina

specialist, a neorologist and had ERG's done at a Retina

Foundation. There is no physiological explanation that can be

detected from examination. I had a MRI that showed new lesions and

the ERG shows abnormal readings in the area that corresponds to the

blind spot. It has been nearly 6 months of this. Yesterday, I did

another round of the ERG and physical exam. The Optho said it was

probably related to MS.

What is the reason that medical people won't say, it must be MS? I

have had MS symptoms for over 25 years. The neuros and MDs have

almost always said, " demyelinating disease " and " could be MS " , but

never " it looks like or is MS " .

Any thoughts are welcome.

Peace & Love,

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[Guest guest]

I think they don't want to give you a label until they are 100% sure, and even

then they don't want to give you a diagnosis because it's tricky to diagnose,

and there is some down falls w/ being diagnosed w/ MS. Being labeled w/ any

chronic disease can make getting health and life insurance difficult. (I've seen

that happen w/ my grandfather who was given a dx of diabetes to only have

another dr say that he doesn't and never had diabetes and he's still continually

denighed insurance because that is on his medical record) Plus a diagnosis puts

you in this box where people dont see you for who you are...they see your

illness. My husband complains about that all the time with his diabetes...he was

diagnosed at 18 when they came across a stomach ulcer, but now when his friends

& family see/talk to him the first thing they ask is " so hows your

diabetes " ...not " how are you doing " like he would like them to ask. He tells me

that he feels like he's not a person anymore, but an

illness when he talks to well meaning loved ones. So I think coming to a

definative diagnosis of MS is something that most Dr's dont take lightly. For me

I am stuck between wanting a definative diagnosis and not wanting to be labeled

and put in this box of what I can and cant do/feel. But either way I want my

Dr's to be 100% sure of their diagnosis before they diagnos me with something

that may make getting life insurance more difficult. But that's just my 2cent.

natrite3120 wrote:

What is the reason that medical people won't say, it must be MS? I

have had MS symptoms for over 25 years. The neuros and MDs have

almost always said, " demyelinating disease " and " could be MS " , but

never " it looks like or is MS " .

Any thoughts are welcome.

Peace & Love,

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[Guest guest]

,

I don't know if this helps you at all but...I was diagnosed with " Probable

MS " in 1993. Doctors talked to me like I had it even though they called it

probable MS for many years. I felt since the diagnosis that I had it MS.

It took until probably 2001 before the called it " MS " . I actually felt

happy when they took the work " probable " away. Doctors need to see signs of

symptoms coming and going over and over before they will call it " MS " . I

don't know if that helped you at all.

-- Why is it so hard to get Dr.s to say " MS " ?

I have been reading the experiences of a lot of folks here that

mirrors my experience in having all the symptoms, but not having the

diagnosis of MS. I won't recount my personal experience from the

past, but I will tell of my current situation.

In June the vision in my right eye went from 20/15 to 20/50 with

floaters, light flashes and a spot that was blind almost overnight.

(I think it is getting better, now!) I have seen a retina

specialist, a neorologist and had ERG's done at a Retina

Foundation. There is no physiological explanation that can be

detected from examination. I had a MRI that showed new lesions and

the ERG shows abnormal readings in the area that corresponds to the

blind spot. It has been nearly 6 months of this. Yesterday, I did

another round of the ERG and physical exam. The Optho said it was

probably related to MS.

What is the reason that medical people won't say, it must be MS? I

have had MS symptoms for over 25 years. The neuros and MDs have

almost always said, " demyelinating disease " and " could be MS " , but

never " it looks like or is MS " .

Any thoughts are welcome.

Peace & Love,