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Frieslander
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18 Apr 2011, 4:38 pm

Not only is my physiology royally screwed up, but I may have Marfan disease too, I found out today.

My thoughts of living a productive life before dying are pretty much nil, I think.



sedjat
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18 Apr 2011, 4:52 pm

Have you had an echocardiogram yet? There's Marfan's and then there's Mafanoid body habitus, the later not being so severe.



Frieslander
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18 Apr 2011, 5:29 pm

sedjat wrote:
Have you had an echocardiogram yet? There's Marfan's and then there's Mafanoid body habitus, the later not being so severe.


the physician didn't use the word "echochardiogram" but did say my heart should be scanned at about age 45. Would that be an echochardiogram? They had some blood test done on me.... maybe that was for Marfans.



sedjat
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18 Apr 2011, 7:44 pm

The doctor is probably not terribly worried about Marfan's if he/she is advising you to wait several years before checking your heart. Maybe I'm wrong, I'm not a doctor (just have some personal experience with a possible Marfan's diagnosis, though it turns out that I don't have Marfan's) and I don't know whether the doctor is any good or not.

Here's a couple links to information about Marfan's
http://www.nlm.nih.gov/medlineplus/ency ... 000418.htm
http://www.marfan.org/marfan/
http://www.mayoclinic.com/health/marfan ... me/DS00540

Some of the info may sound scary, but, if the doctor isn't having your heart checked immediately, it may not be quite as serious as it sounds. There are a lot of different types of connective tissue disorders; most of which are manageable (not life threatening) (see http://www.marfan.org/marfan/2283/Related-Disorders; http://rarediseases.info.nih.gov/GARD/C ... drome.aspx). Although you still have to make sure your heart is ok.

As for the blood tests, one has to do genetic testing to determine if you have a certain genetic mutations that are associated with Marfans. I don't know whether or not that's what they are doing. They might just doing some basic blood work to rule out anything else (for example, a thyroid problem). They did a lot of blood tests on me to make sure there wasn't anything else that could be causing the symptoms.

I hope you feel better. :)



Frieslander
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18 Apr 2011, 9:21 pm

sedjat wrote:
The doctor is probably not terribly worried about Marfan's if he/she is advising you to wait several years before checking your heart. Maybe I'm wrong, I'm not a doctor (just have some personal experience with a possible Marfan's diagnosis, though it turns out that I don't have Marfan's) and I don't know whether the doctor is any good or not.

Here's a couple links to information about Marfan's
http://www.nlm.nih.gov/medlineplus/ency ... 000418.htm
http://www.marfan.org/marfan/
http://www.mayoclinic.com/health/marfan ... me/DS00540

Some of the info may sound scary, but, if the doctor isn't having your heart checked immediately, it may not be quite as serious as it sounds. There are a lot of different types of connective tissue disorders; most of which are manageable (not life threatening) (see http://www.marfan.org/marfan/2283/Related-Disorders; http://rarediseases.info.nih.gov/GARD/C ... drome.aspx). Although you still have to make sure your heart is ok.

As for the blood tests, one has to do genetic testing to determine if you have a certain genetic mutations that are associated with Marfans. I don't know whether or not that's what they are doing. They might just doing some basic blood work to rule out anything else (for example, a thyroid problem). They did a lot of blood tests on me to make sure there wasn't anything else that could be causing the symptoms.

I hope you feel better. :)


I do feel better, thanks. I partly get screwed up and nervous when seeing a physician. Amd part of it may be an injection they gave for an immunization.



Lene
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19 Apr 2011, 9:39 am

Frieslander wrote:
sedjat wrote:
Have you had an echocardiogram yet? There's Marfan's and then there's Mafanoid body habitus, the later not being so severe.


the physician didn't use the word "echochardiogram" but did say my heart should be scanned at about age 45. Would that be an echochardiogram? They had some blood test done on me.... maybe that was for Marfans.


Yeah, an ECHO is just a scan of the heart to check that it's a normal size and that the valves are working properly. It doesn't hurt.



shadowchyld
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21 Apr 2011, 4:15 pm

Frieslander wrote:
Not only is my physiology royally screwed up, but I may have Marfan disease too, I found out today.

My thoughts of living a productive life before dying are pretty much nil, I think.


My roommate has Marfan's and he is 50 and doing pretty good. He has had some complications but the doctors have really helped him along with that. It's not an automatic death sentence, keep your head up.



Frieslander
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21 Apr 2011, 4:25 pm

Lene wrote:
Frieslander wrote:
sedjat wrote:
Have you had an echocardiogram yet? There's Marfan's and then there's Mafanoid body habitus, the later not being so severe.


the physician didn't use the word "echochardiogram" but did say my heart should be scanned at about age 45. Would that be an echochardiogram? They had some blood test done on me.... maybe that was for Marfans.


Yeah, an ECHO is just a scan of the heart to check that it's a normal size and that the valves are working properly. It doesn't hurt.


BTW, I actually am getting a scan next week. The doctor didn't say that.


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Friesland = a province in the Netherlands. Pronounced so that it rhymes the English word "free" (not "fry"). I live in the USA, but I have a Frisian surname and all-Dutch ancestry. Just a minor Aspie obsession of mine.


rissadc
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16 Jun 2011, 11:02 pm

My doctor is pretty convinced that I have Marfans, I gotta go see him in 3 weeks. I have every skeletal symptom and a few others. I'm 6' 1/4" and still growing like a weed. I grew 2 inches last year, and already 1/4 of an inch in the last few months! I have flat feet, toes that curl up, i'm long and lanky, curved spine, except it curves from front to back, kyphosis or something like that. I have a long face, crowded teeth and very high palate. I'm very flexible in my joint.

I've been having chest pains for a while now, it feels similar to anxiety except it actually hurts a lot and it lasts a lot longer than anxiety does. I already have bad circulation. My legs and feet turn purple often, and my hands are always cold. I'm not getting enough oxygen so I'm always yawning and hiccuping.

I wouldnt mind talking to other marfan aspies if possible. I'm kind of lost...



Frieslander
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17 Jun 2011, 6:40 am

rissadc wrote:
My doctor is pretty convinced that I have Marfans, I gotta go see him in 3 weeks. I have every skeletal symptom and a few others. I'm 6' 1/4" and still growing like a weed. I grew 2 inches last year, and already 1/4 of an inch in the last few months! I have flat feet, toes that curl up, i'm long and lanky, curved spine, except it curves from front to back, kyphosis or something like that. I have a long face, crowded teeth and very high palate. I'm very flexible in my joint.

I've been having chest pains for a while now, it feels similar to anxiety except it actually hurts a lot and it lasts a lot longer than anxiety does. I already have bad circulation. My legs and feet turn purple often, and my hands are always cold. I'm not getting enough oxygen so I'm always yawning and hiccuping.

I wouldnt mind talking to other marfan aspies if possible. I'm kind of lost...


Interesting that you pulled up this thread. I got back the results of an echochardiogram from a doctor by phone yesterday. (How did you happen to see this thread? I am curious. I posted this several weeks ago.) He said I have a slightly dilated aortic root. Another Aspie on this board has confirmed Marfan's. She posts to the adult forum a lot.

Do you know why someone with Marfan's would yawn a lot?



Xenabaiche
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12 Dec 2011, 6:33 pm

Frieslander wrote:
Interesting that you pulled up this thread. I got back the results of an echochardiogram from a doctor by phone yesterday. (How did you happen to see this thread? I am curious. I posted this several weeks ago.) He said I have a slightly dilated aortic root. Another Aspie on this board has confirmed Marfan's. She posts to the adult forum a lot.

Do you know why someone with Marfan's would yawn a lot?


Hey, I don't use that other account, rissadc is now xenabaiche. I found it using the google custom search thingy above. I just searched Marfans and this is what came up. I actually was diagnosed a few months ago. I only have an arrhythmia so far though.