Sticky blood

[Happy1]

Hello everyone! It's been a while. I've been busy training for the MS 150 here in Dallas. We got one day in, the other was rained out.

Anyway, my apologies if this has been discussed here but it's new to me. While fundraising for the MS 150 a coworker of my husbands discovered that she did not have MS she has Hughes Syndrome. The way she came about it was a bit strange, our insurance wouldn't pay for Tysabri so she went to this Neuro that, honestly, we thought was a quack. He put her on a strange diet and no medication. Her disability was progressing pretty quickly and we were a bit worried. I don't know her - just stories that my husband told me. SO, apparently he did two simple blood tests and voila, she has sticky blood. She is now on blood thinners, and physical therapy and doing really, really well. Amazing, and I'm so happy for her.

Is this something that is well known? I've never heard of it and my neuro (of course) seems dubious.

Here's the info:
http://www.hughes-syndrome.org/symptoms.htm

Thoughts?

Thanks. Have a wonderful day.

Jenn

[AMFADVENTURES]

Sticky blood, that's a new one for sure.

How's Windhaven Hill treating you this year Jenn?

Larry

[Happy1]

OM goodness. Have you done Windhaven??? Just the MENTION of Windhaven makes me sweat a little (LOL). I haven't tried it this year, don't want to, I'm keeping it all positive this year

My husband got into riding this year (bought him a bike and everything) and he is dying to try it. When he does I'll be happy to walk up it after him (again). And than never do it again.

I just am not strong enough. Don't know that I ever will be. At some point, in my hill training, I look down and I'm doing 4mph. People run faster than that!!!! And I'm using "hill training" liberally there. I dropped my chain going up a slight incline and I had to walk up it because I couldn't get enough umfff to get going. Oh well, at least I almost always have a smile on my face.

Yeah, sticky blood????? I'm glad for my husband's coworker if, in fact, that's what it is. It even mimick's lesions on the brain so the MRI's look very similar. Just seems odd and I don't know why.

Thanks for taking the time to answer, I'm glad I'm not the only one who's never heard of it.

Have a fantastic day!

Jenn

[Stella]

Hughes Syndrome sure sounds scary. Is there a cure for that? Since it has some of the symptoms of MS?

[AMFADVENTURES]

Rofl

OM goodness. Have you done Windhaven??? Just the MENTION of Windhaven makes me sweat a little (LOL). I haven't tried it this year, don't want to, I'm keeping it all positive this year

My husband got into riding this year (bought him a bike and everything) and he is dying to try it. When he does I'll be happy to walk up it after him (again). And than never do it again.

I just am not strong enough. Don't know that I ever will be. At some point, in my hill training, I look down and I'm doing 4mph. People run faster than that!!!! And I'm using "hill training" liberally there. I dropped my chain going up a slight incline and I had to walk up it because I couldn't get enough umfff to get going. Oh well, at least I almost always have a smile on my face.


Jenn

Rolling on the floor laughing here Jenn!

Your ride's coming up pretty soon isn't it? Hope you'll let us know how it goes.

Larry

ps: I'm pretty familiar with 4 MPH on hills.

[Happy1]

It was 2 weeks ago. I was soooo proud of myself - I somehow convinced myself I finished 1/2 hour earlier than last year. Than I remembered that we had a rain delay last year so I finished about the same amount of time. I'm still proud of myself but a little deflated LOL! Anyway, second day we had big storms and it was canceled, which made my butt happy AND I got my hubby involved and we raised some money so it was all good.

Hughes syndrome doesn't have a cure but the treatment is some sort of blood thinning medication from aspirin to coumadin or wafarin. It's very interesting how similar the diseases are and (if you believe the Internet) how many people are misdiagnosed with MS that have this syndrome. I'm convinced that I don't have this syndrome and I still have doubts that it's actually a disease (I don't know why, I just do) but wanted to ask if anyone had heard of it.

Have a great evening

Jenn

Ps, Larry, thank goodness!

[AMFADVENTURES]

Congratulations on the ride Jenn,

Larry