Chiari Online Support Group

Hi Margo!

Welcome to the community @Margo,

You sound very very busy from your profile! I would suggest clicking on the “New” tab on the general discussion page, that way youll be able to read everything that you have not seen yet. Another tip I have for being able to schedule in this community with one’s busy life is to keep this open in a tab on your computer. If you come across a post you are interested in, comment on it (it can be short), then, if there is more activity on that post you will be able to see it faster!
I see that you are an artist too, what type of art do you like doing?

Jakob
He/His

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Hi I’m Margo,
I’ve had Lupus SLE For over 36 years and was just diagnosed with Myasthenia Gravis and Chiari Malformation I. One or all of them are causing Parkinson/Dementia symptoms. I’ve been a Paramedic for 26 years and work in an ER as an Emergency Room Tech for over 13 years. But now I can hardly walk or remember things and headaches, neck and back pain are ungodly. I’ve gotten lost driving to my daughters who only lives a few miles away. I’ve had 11 falls since the end of February 2020. I’m 61 And wish the Doc could come up with something to help.
God Bless you all for listening!
Margo

HI Margo,

I hope the doctors fins a way to get you some answers and relief. You have a lot going on. I wonder how many of us have autoimmune along with Chiari. I only know EDS is one of them.

Of all the tings I have experienced, the memory loss and dementia type symptoms worry me the most (except the new breathing issues). Probably the fear many as we age. I have had several episodes of not even recognizing my long term partner’s or dogs’ faces. Even my own in the mirror. Confusion sucks.

But, we are too young to have dementia stuff - I know not really, but…

Feel free to message me anytime if you just want to vent.

Sending good vibes