Feelinga bit like Red - is there a protocol for definitive MS?

[JemmAus]

Well, as RedFlame said, he giveth and he taketh away. Not that my neuro has done so, however:

On the 13July my neuro said to ME, "MS".

ON August the 20.....something, 25th I think, when I asked, if it's NOT MS, what could it be, he said "Well I ca't think of anything it could be except MS".

But yesterday I saw my GP (normal doc) and the two letter he has from my neuro say, and I quote:

"J has a difficult diagnostic problem here. She has seen many neurologists in Brisbane and there is a somewhat different opinion as to her symptoms being atypical migraines or possibly MS.
She does get migraine, two or three severe headaches a year. She has had, 3 years ago, what her daughter thought might have been a seizure. EEG at the time was normal and CT then MRI scan showed WML and hence MS was raised as a possibliity.

She has been getting worse since november 2009.

She moved from Bris.......blah blah due to heat etc. Her fatigue from the heat was out of proportion to what other people would normally feel. this does raise the possibility of MS. The MRI scan that I reviewed showed extensive WMLs throughout the hemispheres with some juxtacortical lseions. Some of them are quite large and there are some very small lesons in the corpus callosum which certainly to me looked more like MS than small vessel disease.

She currently suffers swaying, lightheadedness, no headache ( ahem, yes I do), anxiety (wonder why?) and tight feelings in her legs. ON examination there is mild weakness in the legs.

the diagnosis is not established yet and I will be investigating further...

blah blah yours...."

AND a second letter:

"the lady with possible MS had VER today which are quite satisfactory. IN the last 4 days she developed ataxia, parathesia in the feet and her legs are weak.

ON examination there is mild weakness in the left leg, the left plantar response is equivocal and vibration seems diminished on the left compared with the right.

it would appear she is having a relapse but she wasn't keen to have pulse therapy at this satge (due to commitments with a child - my words not his)

If this settles and doesn't progess I thought we'd do an MRI scan of the brain and cervical spine to see if there are new lesions.

Blah blah yours etc"

SO

To ME he says, "MS", to the other doc he says "possible".

WTF.

What is it that is stopping definitive diagnosis? and why would he say one thing to me and another to my GP?

[Quixotic1]

i HONESTLY DON'T KNOW THE number for adult docs.  

For pediatrics the American Academy recommends no more than 1800, but I was required to carry 2250 by one of the HMO's that I worked for.  I actually had 2550 and we couldn't get people to change.  

My MS Clinic has about 800 and the clinic at OHSU has more like 1000.

Still it's a lot of people to juggle.

If your clinic shares with peds and geriatrics (odd combo) then it sounds small.

Quix

[RedFlame]

I didn't know that doctors had that many patients, that really puts things in perspective.  I can't imagine trying to keep all of that straight.  

Perhaps we/I should be more understanding of their situation and attempt to help them remember us.  

I'm with you Jem!

xxxxoooo

Red

[figuerpa]

I am right there with you. I don't know what to think anymore. I am to the point where I am going to let happen what happens and not worry about it anymore.

My doc won't start me on DMD's either and he told me today that I have early MS. So I think we should all just kick our neuros in the a@@


Good luck and I hope something turns up with you soon,

Hugs,
Paula

[Quixotic1]

Well, to this guys credit, he certainly is thinking about you.  Though I don't understand entertaining a diagnosis of atypical migraine with your status deteriorating like it is.  Making a diagnosis of something as complex as MS is a process.  A doctor's mind will wrap around it, briefly as new info comes in.  Remember that most docs have 1500 patients or so.  

Letters may be written spread apart by some time during which the picture gels in the doc's mind.  Heck, maybe he even wondered about the neurological deterioration with a diagnosis of just Migraine.

It sounds like he is adjusting his view of what is going on with you as time goes by.  This is a good thing.  It shows that he is thinking.  My recommedation is to give him the space - and a little time - to do this.  Clearly, by the second letter he is thinking hard and leaning toward MS.

Quix

[RedFlame]

WTF?  Maybe she does, maybe she doesn't,  I can't think of anything else,  I don't know, can I go home now?

That's where Old McDonald comes in and saves the day.  McDonald sings e-i-e-i-o----

They draw straws, whoever wins gets to be King of the MS world.   ee-i-ee-o-------

Seriously, this doesn't make any sense, but you already know that.  Do you have a PCP that can make sense out of all of this?  

Let's do an Intervention for neurologists.  We can confront them with their addiction to changing their minds.  Each of us get to read our letter "your addiction of repeatedly changing your mind has affected me in the following ways".  Then we send them to Neuro Rehab where they work on their problems with MS.  They also have to work on their addiction to Old McDonald.  To be healed, they have to diagnose MS with out question.  Voila!!!

We need to live together and go to each others appointments.  There is power in our numbers.  Doctors will quiver at our very presence.  We will reign!!!!

I know, I am really in a mood tonight!!!!  

hugs sweetie pie

Red

[JemmAus]

Oh PS:

I KNOW about the mcdonald criteria and all that....I am just wondering what is stopping him saying 'definitive'.

Also he has no hesitation in wanting to start me on Betaferon. I thought they wouldn't do that unless they were sure? What effect would a DMD have on a person who did NOT have MS?