Ess . . . "wimpy" diagnosis

[risnerrose]

I saw your data on the "diagnosed" thread.  Refresh my mind . . . why did you say "wimpy" diagnosis?  (I'm sorry if this is something you've shared often - but my brain does not retain information well anymore!)

Just curious :)

Sherry

[doni54]

I've often wondered the same thing, Sherry.  If MS is strongly suspected, will starting DMD's be the wrong avenue to take.

It would make sense to me that using the DMD would be a good thing, but I'm not a dr, so what do I know.  I will try to do some research on this question and post what I find.

doni

[risnerrose]

In a world where everything has to be ruled out - before MS can be ruled in . . . is it any wonder we question our own symptoms and diagnosis?  I've been running this through my mind for two years now; in fact, my own self-doubt allowed me to spend a year with a neuro who was a self-confessed conservative when it came to treatment.  I took my labs and MRIs to a new neuro this past Monday, and within the hour was discussing DMD options.  It scares me to realize that neuros can see the exact same reports and come up with totally different answers.

An "unread MRI" almost led to a "small strokes" diagnosis for me.  I've often wondered what would have happened if the error had not been caught . . . or . . . what if that diagnosis was correct???  What are the repercussions of using a DMD if it turns out not to be MS?


Do the questions ever stop???? :)

Sherry

[essdipity]

Hi, Sherry. Don't mind repeating this at all. When I saw my current neuro last January, he said my MRI abnormalities were way worse than 'microvascular ischemic disease' could account for. That's what earlier radiologists had said, and earlier neuros either agreed or didn't bother to look at the MRIs themselves. I know that for sure. The new neuro also found abnormalities on exam, and noted I had an abnormal VEP. So he ordered more bloodwork (as if only Hopkins' labs can do it right), just to cover all the bases. Since everything else was then ruled out, he diagnosed MS, sort of.

At that point he backed off the more firm diagnosis since my MRIs were atypical, and even said something about MS being possibly a whole group of diseases. He suggested a DMD but didn't push, but he did say that he wouldn't hesitate to push if the DMD's unpleasant side effects were not so prevalent. I consulted the forum on this, and Quix said he doesn't have the courage of his convictions and is a wimp. I have to agree. But I'd much rather have those side effects that the 'front effects' of MS, so that settled that for me.

This past summer I had more MRIs, this time at Hopkins, using one of their 3Ts. The radiologist didn't have the old MRIs for comparison, but saw pretty much the same stuff, no enhancements. He too suggested ischemic disease, but also said it was within the differential for MS. My neuro suddenly began to doubt his own MRI interpretation, since the Hopkins radiologist of course knows more than any other rads. elsewhere. Anyway, he began subtly to make it seem as if he is indulging me by keeping me on Avonex. He has conveniently forgotten my 'impressive' timeline and test abnormalities, and even thinks I have small fiber neuropathy. He made up his mind on that before testing (had EMG/nerve conduction, nothing abnormal), and ignores symptoms that don't fit into his tight little mold. He doesn't say I don't have MS. In fact, he strongly implied that I do, but still....

You and others might wonder why I still have this doctor (who is my 6th neuro). I went to him to get access to the only 3Ts available, and he did give me a diagnosis, however wimpy it is. That got me on Avonex. I don't want to have MS, and most of the time I have real doubts that I do. No heat sensitivity and no cog fog, mainly. But assuming I do have MS, staying on Avonex is important.

No doubt all of the above fits into the category of Too Much Information, and for that I apologize. But that's why my diagnosis was wimpy.

ess