My GP is awesome!

[ANonnyMouse73]

She rang me this morning just to see how I was, and ask whether I'd heard from the hospital about my referral to a neuro yet. It was basically a follow up call from our last visit where she passed on the dx of MS given by the neuro who initially assessed me, but I hadn't expected it at all. I sort of thought that once I had a dx she'd just pass me to the neuro and only treat me for non-MS related illnesses. She said that if I had any new symptoms, or just needed to chat or debrief etc I was welcome to call her or make an appointment.

Whille I had her on the phone I also took advantage of her and got some opinions on my newborn's chesty cough, and my toddlers gastro, as well as my irritating balance/ear issue this week, and she didn't fob me off at all but took time to chat to me about it and offer some helpful advice.

She also said she would print a copy of the neuro's "very in depth" letter to her on the findings and dx after my MRI, and leave it at the front desk for me to collect later today, and a copy of the results of my recent blood tests in case they could use those rather than take more blood to test.

This was so at odds with my usual expectation of GP's that I wanted to post it here to share with you. :D

Bec

[COBOB]

CU has a program where you can will them your brain.  I'm going to consider it since I have no use for mine when that time comes.  Might as well have a place in the University of Colorado Brain Bank.

Bob

[essdipity]

I doubt if there are answers to these questions. Here's an interesting site on autopsies in general, esp. the US:

http://www.deathreference.com/A-Bi/Autopsy.html

Since very few MSers' deaths' are attributed to MS, I would guess that the rate of autopsies in MSers is close to that of the general population. The above article explains what the usual criteria are for this procedure.

From my viewpoint, 95% is pretty darn close. I would much rather be wrong about MS while using a DMD than take the 5% chance that my neuro was wrong. So I don't quite understand why this issue is such a problem.

ess

[wiggles94]

But then there are those people they don't autopsy - who either were dx or not.  So what % of the people who have MS have autopsies when they die?  And what % of people who have symptoms but aren't dx have autopsies?  Now you have made me have more questions essdipity!  This is like a never ending game!

[essdipity]

My neuro, who is a Hopkins MS researcher, told me that based on autopsies, MS is correctly diagnosed 95% of the time.

ess

[COBOB]

I think Quix has said this before, but the only 100% sure diagnosis comes from looking at a effected section of the brain, so the 100% definitive diagnosis is usually made after death.  I am willing to live with an 80% diagnosis and continue to live with what brain I have.

Bob

[wiggles94]

Hi ANonny,

I know exactly how you feel!  I have had different medical people give me the same info in very different ways - one made me feel for SURE I had ms, the other made me feel I didn't....yet the info they shared with me was the same!  

I think MS is such a confusing disease - especially for docs who really aren't as sure about it as "experts" in the field.

Your posting and what a lot of us seem to be going through lead me to this question:

Do Docs EVER know for SURE that someone has MS????   I think that answer would have to be NO as there is no definitive test for MS.  SO they have to play the percentage game.  If you present with certain symptoms and test results ect, based on studies, chances are 80-90% that you will convert to definitive MS ......at some time.....maybe.....

AHHHHHH!  I am on disease mod therapy as I don't want to risk playing against the odds and end up with permanent damage.  BUT I"m still looking for more definitive answers.

This disease is JUST confusing!  Good luck to you!

[ANonnyMouse73]

Well I read the letters and I have no idea why the GP said to me today that the dx was "99% probability"??? I assumed the neuro had said that, but apparently not.

I feel like I'm back in limboland!

The neuro's first letter said there were "no objective findings such as pale optic discs, disconjugate eye movements, ankle clonus, extensor plantar responses, ataxia etc".

She then went on to say:

"CLINICAL IMPRESSION: This is all very unusual. The patient's symptoms and signs are not consistent with peripheral neuropathy [this is what we first thought I had] and the areas of sensory loss are non anatomical and are not consistent with a diagnosis of mononeuritis multiplex. In a young post natal woman I felt the top priority was to consider and hopefully exclude delyelination and to this effect I have arranged for an MRI scan of brain and neck and will take the matter further as appropriate when the results are known".

So I went for the MRI which showed quite a few lesions (I counted 17). But her followup letter to my GP said:

"I think she probably has multiple sclerosis although the presentation is all a little bit atypical. Since she lives at ..... which is not all that convenient to my rooms, I strongly suggest that you refer her to see Dr .... who has a particular interest and expertise in the area of MS".

So I don't know. I'm reading this thinking that sounds less like a 99% probability and more like a "could be, but something's not quite right".

I'm confused!

[ANonnyMouse73]

(Of course I'm REALLY looking forward to reading that letter! I hadn't expected to be able to see it at all, seeing as how it was addressed to her, not me)