This Is MS Multiple Sclerosis Community: Knowledge & Support

Jean, syckbastid has said it best! You can only assess the situation the best you can and try to make the best choice for you and your girlfriend.

Maybe her circumstances are not so severe yet...maybe they never will be. Maybe the PhD plan is most workable now, early on. Maybe, maybe, maybe--welcome to the unpredictability of MS.

Pray for guidance in making your decision; may God bless you both.

Hi Jean,

In response to your questions of 7/13, my MS stats are:
- PPMS diagnosed 26 years ago
- 1 notable lesion on upper spine, 'perhaps' 1-2 others in same area, none in brain
- EDSS 6.5
- still work fulltime, managing small firm
- walk with crutches, weakness, fatigue etc
- neuro says he believes I have no axon damage
- neuro says I have one of straightest spine seen - only 1 kink (but not where lesion)

Hope this profile helps but quite different from your friend.

Hi Brainteaser,
Not to be offensive but I can't help but be a little incredulous......did your neuro explain how a 6.5 EDSS comes about without axon damage?

I can't say that I "like" this thread but am finding it beneficial to learn the condition of some of you people whom we often hear from but otherwise know nothing about.

I'm starting to get the idea that the average EDSS on this site is WAY higher than I had assumed.

Bob

Hi Bob,

I don't want Jean's thread to head off somewhere else - but regarding your skepticism of my axon condition, all I can say is please don't shoot the messenger.

Personally, I find a lot of things about MS incredulous - like how they can spend billions and still have no cause or cure. All I can say is that my neuro is a top MS researcher (but not God!) and I take on board things he says.

Hi Brainteaser,
I forget that it's impossible for the reader to gauge these posts in the spirit they were written....sorry!

Definitely NO shooting the messenger going on here and I'm sorry if it seemed that way.

Back to Jean's regularly scheduled thread!
Bob

Hi Jean

Just to pick up on this thread...My situation is not really similar to your girlfriends: I have my first major relapse in 2006, MRI showed some old spots in brain and c-spine (non--enhancing - probably dating from up to 8 years ago, with hindsight), and a new one in the brain, plus a large on in the c-spine, running from c4 to c6, which was thought to be causing my problems. 9 months later, after 5 months on Avonex and 3 courses of iv steroids, plus two more relapses, the lesion in my brain is no longer enhancing, but the one in the c-spine is, but the bulging of the cord has subsided - I seem to have hit a plateau! I work full time, have two small children, and a husband who is a busy attorney - we lead a relatively normal life. Statistics are just averages, with standard deviations, worked out on a small sample population and extrpolated to the larger ms population. Whist they are interesting and occasionally relevent, the most significant thing I have learned about ms is that it is unpredictable. There is every chance that with good treatment, your girlfriend may well be ok for a long time, but no one can really say for sure! Is there no way that she can go withyou and get a job in the city where you will be doing your phd? This is a decision you should talk to her and her doc about - maybe they can give some input? Either way, I wish you both well and I am sure that you will make peace withyour choice, whatever it may be.

Ally

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Al

sort of on the thread, but on a tangent.

Do any lesions show up on the MRI using the contrast medium, that would not show up on a non enhanced MRI?

And if so, are they ever significant?

I ask this because I have never chose to take the contrast medium when offered.

Sorry, for taking the thread off a little...

Hi Cure,
Several months ago one of the thisisms regulars did a very interesting post on MRI enhancement in lesions, but I can't find it now.

I may be wrong but I THINK that MRI without enhancement shows lesions to the best the resolution of the particular MRI machine allows and the idea behind the added enhancement is that it highlights aspects specific to inflammation which signifies active lesions.

Then again I'm not 100% sure I understand the question
Bob

When the dr offered me the gadolinium, I asked what it provided, and he said that it showed which lesions were "currently active". Now from my understanding, lesions come and go, and I was more interested in the long term picture, and was/am on lots of meds that might just interact.

Hi Cure,
I've always been of the opinion that the patient is the one who is living with the disease and should be considered the ultimate authority. It's good to hear that the people involved in your medical care seem to honor that.

In reading a little about gadolinium this morning I can see why you weren't crazy about being injected with it. From what little I know about the situation, your outlook seems pretty sensible.
Bob