[Erika]

Neuro visit update

In a nutshell...more tests on the schedule and so some more waiting for answers. I know that most if not all of you have been through this as well so here's a BIG group hug (not the MS kind) for all of us.

At today's visit, we reviewed my history since the initial ON in 1978, which includes ON reoccurrence in1988, several other periods of demyelination symptoms through the years, including TM in 2000-2002, along with 3 brain MRIs showing multiple lesions. Given that for the last 18 months there has been a steady increase in severity of whatever is causing cognitive problems, vision issues and increased weakness and spasms, the neurologist is suggesting that a more correct diagnosis might be Devic's disease/NMO; so now we wait for the blood work to come back on that one. He is also scheduling an MRI of the spine to see if there is evidence of TM reoccurrence.

Haven't cried like that since my husband passed.
It wasn't the potential diagnosis of Devics/NMO. I've known that there's something wrong with the nervous system for quite some time and it has long since stopped mattering what name or set of abbreviated letters it is given (ON, TM, MS). Adding NMO to that list doesn't really bother me.
What set the tears to flowing was sitting there with the PT & OT after the neurological testing was done and realizing that the body had just revealed that it can no longer do...well, you all know the deal. Stand on one foot, heal to toe walk, straight leg raise; all that stuff and a few more were fails. It was just such a shock to realize how much decline has taken place in the last year...and the therapists wanted to talk about how I was coping.

The truth of the matter was that I was still trying to wrap my head around the implications of what had just been revealed. The body has been in a steady decline for at least the last year and the tests today proved it. More concrete coping strategies will come in time I suppose, but apparently I've been muddling through fairly well on my own. I mean, how often does one need to stand on one foot or walk heel to toe or do a straight leg raise etc? I'm just kind of stupefied that I didn't realize that things had deteriorated to such an extent. Apparently it is true that 'denial' is not just a river in Africa...

Cognitive issues were also pretty obvious with respect to memory and realizing that as well, certainly isn't helping matters at the moment.
The neurologist had been looking at the medical history summary and was asking questions about some specifics with respect to health issues during relapses; even hinting at things he would like to discuss. Yet I still didn't catch on and so didn't say anything at that time about what most would consider fairly significant health issues (mostly to do with TM, regional enteritis and hypothyroidism).
I remembered some of them during the drive back home some two hours later and have realized now that he was more interested in testing my ability to relay information from memory rather than in the actual health issues. Maybe the effects of those issues have been there for so long that I've just gotten used to them; but because I didn't speak about them, I think that I failed some portions of his cognitive-memory testing as well.

So that's about it. I'd like to go and have a bit of cheese with my whine...but I'm lactose intolerant too. I just needed to lighten the load a bit in the company of those who understand... and I feel better already.

Thanks once again for being a listening ear.
With love, Erika

[Dejibo]

aww, hugs. hang in there.

[SallyC]

I hear you, Erika and will whine right along with you....
Stupid Creepy Disease..

The good kind..

[Erika]

Thanks for the chuckle Sally. You are always a comfort.
With love, Erika

[new2net98]

It's a fright...first dealing with the symptoms & then dealing with the doctors (whose job it is to help you). I understand that these things take time but some of those not-so beloved docs need to remember that if it weren't for us...they wouldn't be where they are today.

Kindness, empathy & consistancy never went out of style...they seemed to fade away with accuracy & decentcy.

Completely understand your position, as I am there with you (well, really, in a different country, lol), I am just thankful that I get up every day & try to deal with it all.

Hope you are doing that as well & wish you a doc with compassion.



I'm done now...Have a better weekend!!