This Is MS Multiple Sclerosis Community: Knowledge & Support

PART 1
http://www.youtube.com/watch?v=YHMUPL9T ... e=youtu.be
PART 2
http://www.youtube.com/watch?v=9lke_jKy ... re=related

Oh, wow! That's me!

OK, my friends, I know I'm "special" because I also have Ehlers-Danlos Syndrome (a connective tissue disorder), but the deafening silence in the comments sections kind of screams "FREAK"!

Is it just me? Can anyone else relate to any of these symptoms? I'm sure that much of these are due to the dysautonomia from EDS, but so many of us go on to develop MS, I'm curious what symptoms sound like something YOU may be dealing with.

And Cece, the MoyaMoya dude reminds me -- most EDS patients have a big problems getting oxygen to our brains -- we feel like we are suffocating. This is a huge reason for me to believe that CCSVI (indeed anything that can encourage circulation of blood and CSF around our brains) is a huge piece of the puzzle for us.

So, freak, or can you relate?

Thanks for posting it!

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Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

Hi Dr. Diana. It's Jan. I posted your video here and on CCSVI Locator. Dania is my middle name. They are posted on Facebook CCSVI Toronto.

Thanks, Jan!

You da' bestest...

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Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

Hi Dr. Diana,

You are most definitely, emphatically NOT a freak, NOT at all.

Many of the symptoms you mention are shared by many of us here. Personally, I share about half the symptoms you mention, two of which I never, ever confided to any of my doctors nor even family members because I was afraid they would label me looney, take away my driver's license, and/or maybe even take away my children (fine adults now):

1) "Gaps of time." Very scary, especially upon 'awaking' and finding myself behind the wheel of the car but not knowing where I was supposed to be going, to a doctor appt. or to pick up my daughter after school, for example.

2) Severe short-term memory problems. One minute, I'd order a pizza for delivery, and then the next minute, I'd turn around and start cooking dinner. What you say about numbers is true for me, too... phone numbers are the worst; I can handle being given only one number at a time. Typing is easier than talking because I can see on the screen what my thought just was rather than having to rely on a memory that doesn't work.

I enjoy your videos, and will keep checking back at prettyill.com for more of them!

What I noticed was, like myself, there are sooooo many symptoms that we have. Vague, connected, confusing symptoms.

DrDiana,

I'm one of those people who looks healthy as a horse, but I have MS and I am embarrassed by the problems I have in my head because I can't explain them very well. So you are among friends here

ozarkcanoer

HappyPoet, Cece and Ozarkcanoer,

Thank you for your thoughts! Even if you're lying to me, I am grateful. ha.

The short term memory thing is SCARY. And taking 3 hours to get dressed (when I can get dressed). What's up with that? What am I doing all of that time? Yikes.

I feel like an idiot-savant (that's probably not a "PC" term. Brilliant in some areas (not modesty, obviously), and a total ZERO in others. Sense of direction and name recall? Nope. Not there. It's like an asteroid took out that part of my brain.

Thanks for sharing some of those innermost secrets. Me? I'm an open book. I don't think we'll be able to figure this out until we know all of the areas of the brain it can affect.

FUNNY - I noticed a fair number of views for part 1 of "Symptoms", but not for part 2. I think I wore out everyone half way through! No surprise there! No wonder doctors cringe when they see me coming!

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Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

I can't relate because I have very few symptoms, mainly just drop foot and weakness in the left leg. But I would never call you Freak. We may have different symptoms but we're fighting a common enemy. That makes us friends in my book.

David1949,

That's sweet. Drop foot is probably the only symptom I DON'T have! (Quick, where is some wood?). I have clonus, though. Any points for that?

Thank you for your kind comments. They warmed my freakishly tachycardic heart. ha.

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Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

Dr. Diana

Not being a doctor, I'm not sure how clonus compares to muscle spasms. Anyway two things that help me with the muscle spasms are:

1) An over-the-counter product called Restfull Legs. It helps a little.
2) Upper Cervical Chirpractor adjustments. This has helped quite a bit with the muscle spasms that previously plagued me at night. It has not eliminated the problem but has improved it greatly. Unfortunately it has not helped with my biggest problem; drop foot and weakness in my left leg.

Hi David,

I know I live in the EDS world, which often crosses over to the MS world, but all folks with EDS are lacking magnesium intracellularly. It may measure as acceptable in our blood, but in each cell, it is low.

So for spasms, we take magnesium at night, and Epsom salt baths (pure magnesium that our body can absorb right through the skin).

I nearly kicked my hubby right out of bed a few times before getting on the magnesium!

Now I only kick him out when I intend to. ha.

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Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea