Marfan Syndrome?

[ericajay]

So, I just went to a new doctor yesterday, who is pretty convinced that I have Marfan syndrome. I don't know anything about it- but I guess show some "Marfanoid" traits, like the long wingspan, tall and slim, and the extra flexible joints...and I also have a strong murmur which he was concerned about, and he thinks it might be MVP. I'll find out more next week when I go for an Echo.

Does anyone know anything about Marfan?

Also, I went and had a IV saline infusion this morning, and felt great all day- almost no palps, which is unheard of for me. I had great energy all day, and was so clear headed- after the first bag of saline, I felt like Rip Van Winkle, coming to. Does anyone else feel like this after saline? How long does it last?

Although I feel great, I am wondering if it's bad timing to not have any palps if I am going for an Echo- I hate it when I make a Dr. appointment when I feel my worst, and then feel great on the appointment day and am hoping it doesn't seem like I'm making it up.

[Maxine]

I have EDS, and IV saline seems to make my BP high. I tend to get jittery, but later feel pretty decent. I have blood pooling type of POTs secondary to the EDS. I'm not tall and thin----but not heavy either. I used to be very thin most of my life, but after POTS crash---(first I lost more weight), but then gained it back, plus more from the wellbutrin. I'm about 5ft. 4in. tall and very, very flexable with a lot of joint instability---especially in the spine.

With EDS there's many body types, but Marfans it's thin and tall stature for the most part, and vascular complications.

I'm wondering if I might have a problem with the plastic tubing used for the IV application. I'm very sensitive to chemicals.

I'd like to possible try IV fluids again, as I'm having a rough time with POTS. Maybe a slower drip.

Steroids made me feel like Rip Van Winkle coming to. I was pumped with steroids in a couple of IV bags after cervical spine surgery. That gave me a little boost for the summer in 2002.

Maxine :0)

[ramakentesh]

I think i read somewhere that people with marfans are more likely to develop POTS.

Saline dramatically helps most POTS patients but generally it doesnt last more than 24-48 hours.

[MomtoGiuliana]

IV saline has always made me feel like a new person--for about a day or two....

Interesting about Marfan Syndrome. I am super tall and long-boned, but I am not flexible. Still I have wondered about this for myself too. I still plan to get this evaluated by a specialist--just to rule out.

[Maxine]

Here's a helpful link;

http://www.marfan.org/marfan/

Maxine :0)

[anna]

My Kids have been diagnosed with Classical Ehlers Danlos syndrome but they all have Maran features, one in particularly is tall thin long face long long fingers, arm ratio thing, all my children do the finger wrapping around wrist thing. One has Marfan feet and legs, mildly concaved chest, high arched pallet. We were told by our geneticist that many people with HCTD have an overlap of symptoms, so just to confuse you more you might want to look into EDS as well!!

[flop]

My cardiologist suspected Marfan's when I was much younger. I have since been diagnosed with hypermobile Ehlers-Danlos syndrome. One of the features of EDS is "marfanoid body habitus" ie the tall, thin, wide arm span, long feet/hands but without the actual genetic defect that is the cause of Marfans. Both Marfans and EDS are inherited/genetic collagen defects.

Flop

[mkoven]

this is why it's important to see an experienced geneticist, who sees a lot of hereditary connective tissue disorders. I have some version of eds. I'm short and chubby. But my eds geneticist pointed out, as no one else had, that I have some "marfanoid proportions," in that I have a disproportionately large wingspan and upper body. but tall and thin I ain't-- at 5'3" (on a good day) and a weight I won't quote! It is important to get these things sorted out, as the risks with the different disorders aren't the same. Although the aorta may be an issue in eds, esp. vascular, it almost always is in Marfan's.

[Neshema]

Mkoven

this is off topic and directed to you. I finally checked my inbox and got a message u sent me so long ago u may have forgotten. I am the person u saw from another site that is a Prof in your vicinity. I wrote you a long reply, but got a message that your mailbox is full. So, please make some room for me, or contact me at Neshema1 at yahoo. I'm not doing well, and checking here sometimes is too much. But, I read some of your other posts, and sounds like we have both professional and health issues very much in common. I want to take you up on your interest in communicating. Hang in there! It's tough, I know...not what we planned. I hope to hear from you. Neshema

[fighting4health]

I have a friend that is in his 60s that has Marfan's. He is super active and hikes over 1000 miles every year. His doctor says he can do all the cardio he wants, but no anaerobic stuff. He has had to have the lens on one eye replaced a couple times and he has a heart condition that his cardiologist keeps checking up on. I know Marfan's can have different degrees of severity, but it's possible to have Marfan's and do well.