MS Focus question

[Jesmcd2]

I received the MS Focus magazine yesterday and they had a really good question in there that I wanted to ask you all!

"What do you want your Dr to know about your MS?"

msfocus.org

🤗💕

J🦈

[PWilli]

I'm different, and not in a good way. Just because you've never seen anyone else with this DMT side effect doesn't mean it isn't real, especially when that's ONE of the listed side effects! Other than that, I really do love my neuo, shes very caring.

[Iona60 in reply to PWilli]

I so agree!

[pamgarner]

beside it makes me crazy daily,not being able to do what I think I should be able to?but truly, my secondary progessive is quiet for long periods of time then whammo,it gets more progressive suddenly.there is no pattern to it

[Jesmcd2 CommunityAmbassador]

"Have you not realized that I'm ME YET! And yes I do things differently than anyone else! I have ALWAYS BEEN LIKE THAT!🤣 And please stop freaking me out!😒 Just bottom line it! Thanks Man!😂 Your amazing!"

[Bodega1939]

I almost had a hiccough-y cry when I read this post. I have never had a neurologist ask me personally anything about my MS. I did want to talk about it as an alternative to their choices. They look at the MRI results and just assume it is early onset dementia or Cerebral Vascular Disease because I am old.

The MRI results for MS are very,very very similar to those of CVD and dementia. However, those two diseases change relatively rapidly (so to speak) and there are functional changes that help with the diagnosis. MS is usually slow and even slower.

I know virtually nothing about Primary progressing MS. I do know from reading here and the literature, if and when RRMS changes to progressing, SPMS, the changes may occur rapidly and the brain is still capable of logical thought (at least most of the time) and often the loss of function changes character. There are other functions that are variably intact as seen in RRMS but change with SPMS.

I have never have had a cerebrospinal MRI therefore lesions on the spinal cord have been moot. The question about other AI diseases never comes up. I am well checked out on RA...and all that was positive. Yet it is known that other AI diseases are commonly found in people who have one or more AIs, like MS. Yes, the subcortical periventricular and white matter plaques have been obvious since 2005 when I collapsed in a university where medicine was taught. (Collapse seems to be one of my favorite activities when it is most inconvenient.) Those plaques are as obvious as the the sun or moon. As my RA has been for years and my Sjogren's.

Never, ever one question about functional ability or loss compared to an earlier date; not one word about pain; not one anything about odd things that happen from MDs. Because of my age, it is always for them, a decision between dementia and CVD.

My new current neurologist is different. He did immediately offer the Ampyra when I told him what happened and apparently he was familiar with my years and years of history.

I am optimistic! Maybe I can get him an award thereby encouraging other docs to talk to us! Maybe I should offer to have a series of seminars on Shared Decision Making or some such thing. We all could do that!! We do know how to do that....

[Jesmcd2 CommunityAmbassador in reply to Bodega1939]

I'm so glad your new neuro is taking the time to get to know you!!! It's the best feeling! ☺️

As far as Shared Management goes, I'm all about being your own best advocate!

I also found this webinar for you that talks a bit about the importance of shared decision making between Dr. and patient.

🤗💕

J🦈

[Bodega1939]

I read an article today about scotomas associated with MS. In fact a bunch of articles. I have been having scotomas, scintillating one, for years and years,...even before that first lost horizons episode. Now I ask you, how many of you have experienced a scintillating scotoma? How many of you found it to be difficult to deal with due to the blind spot that travels with the scotoma as it went across your vision? Now I want to know why has this not been part of the diagnostic criteria? My years of "no Dx" is reduced to the level of ignorance of my so called doctors if it is true. I will look further.

Thank you, Jesmcd2! I appreciate your comments very much.

[Jesmcd2 CommunityAmbassador in reply to Bodega1939]

It's can be caused by MS or retrobulbus optic neuritis which is linked to MS. I have had that as a relapse 2 or 3xs Bodega1939 ☺️ I have to see my eye Dr for it!

Vision issues are a big problem for us with MS! I can be one of the 1st signs!😔

J🌠

PS

Here is that webinar that I didn't post! 😂🤣 Sry! 😔🤗💕🦈

mymsaa.org/videos/understan...

J🌠