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cghanima
Super Marf
Joined: 17 May 2009
Posts: 372
10954 Fibrillin
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 Posted: 8:27 pm, Fri 30 Jul, 2010
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hi john
sorry iv missed your post
good news about the eart scan and refferal to genetisist, hope all goes well you may be like me given the all clear from marfans, i have hypermobility syndrome
keep asking the questions that is what we are all here forr
take care
xx
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Cuddles
Site Support
Joined: 04 Mar 2009
Posts: 1705
Location: east kent
54451 Fibrillin
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| Posted: 7:36 pm, Fri 30 Jul, 2010
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John , that is good news , well you know what i mean 
As for the heart , well there are some people in there 60's even 70's that don't have any major problems , and get along just taking the meds  so thats worth remembering .
This condition , like many others is a lottery in what we get dealt , and just because we read something has saddly happened to another member here etc , doesn't mean it will happen to us .
You'll get there mate , i know you must feel anxious as well as other things , but we are here , and always will be
_________________
If there is something wrong , those who have the ability to take action , have the responsability to take action . |
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poegle
Young Marf
Joined: 28 Jul 2010
Posts: 9
518 Fibrillin
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| Posted: 7:27 pm, Fri 30 Jul, 2010
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Well I seen my gp and he seemed to think I may have Marfans but cant say for sure. He looked at my history and noted I have quite a high palette too. Hes contacting genetics people to find someone who knows of it.
My ECG turned out to be an echo & the cardiologist said nothing major stood out but would have a look at pictures and send them on.
Relieved quite a bit that he thinks I'm ok. |
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Cuddles
Site Support
Joined: 04 Mar 2009
Posts: 1705
Location: east kent
54451 Fibrillin
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| Posted: 1:19 pm, Fri 30 Jul, 2010
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| poegle wrote: |
Sorry if I am asking a lot, never found other people who have an idea of what I feel before lol.
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John , if it makes you feel any better we can charge you a fee , say £1 for every question you ask and we answer 
BUT seriously thats what this forum is set up for , and thats what we are here for
SO you have my permission to ask as many questions as you like , if it helps you , even in a small way it'll be worth it 
_________________
If there is something wrong , those who have the ability to take action , have the responsability to take action . |
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Rachel
Super Marf
Joined: 14 Mar 2009
Posts: 699
Location: Dublin
20441 Fibrillin
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| Posted: 12:48 pm, Fri 30 Jul, 2010
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John! Dont be sorry for asking all these questions, ask 1,000 more if you need to, we'll all chip in our bit and help any way we can.
I get the knees going too far back but with me its just when standing, i generally cant stand with them bent normally and if someone happens to touch the back of them or bangs a bag against them I nearly collapse in a heap! About once a year now my knees also dislocate (easiest description but they go back in immediately so more I suppose pop out) and when this happens I generally do fall.
My best description of how Ive been feeling lately is that I have been dragging a heavy sack behind me, that complete lethargic feeling and exhaustion in the back.
You are having your ECG tonight, you also need to ensure you have an Echo done soon too...its the more important scan as it shows up the size of the valves etc and not just the electrical impulses as on an ECG.
Good luck!
_________________
Life is like a box of chocoates, you don't know what you're gonna get next. |
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poegle
Young Marf
Joined: 28 Jul 2010
Posts: 9
518 Fibrillin
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| Posted: 12:38 pm, Fri 30 Jul, 2010
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| John where about in Northamptonshire do you live as i to am from Northamptonshire xx |
Hi June, I am from Wellingborough.
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hi john, nice too meet you,
sorry to hear what yv been going thru, i have marfans, some off yr symtoms sound very similar to mine, ecspecially the tierdness and pain when walking around shops ect, i get pain in one of my ancles, both knees and one of my hips, the only way i could describe it is ocasional sharp pain, like yr knee or yr hip has given out, and constanst aching, like you'd get if you wr coming dwn with the flu or something like that, somtimes it feels as if yr knees bend too far backwards, does this ring any bels?
unfortunatly the dr's dont always listen, and even with a dianosis, some tend to still fob you off, which can leave you feeling dwn in the dumps and not knowing wr to turn, i would say you need to push yr dr's to refare you to someone, or even different dr's for the different things you have going on, even if it takes a long time for yu to get dianosed with somthing, you can still see ppl to help with yr other symtoms,
good luck, hope you get sorted out soon, x |
Yes I get those symptoms nearly every day. I had it so bad last year I thought I had injured my back and went to a back surgeon under the hospital who checked me out. He came to the conclusion that I had problems with the cold weather, as my back hadnt been injured and that my spine was probably going to cause problems in the future.
The knee's hurt a lot for me, like walking to work this morning (5 minute away from where i get dropped off) my left knee was seized up, and my right knee was really loose so I was walking like I was on stilts with a gammy leg. My knees always feel like they go too far back, same with my elbows. I often get the problem where I am standing normally, then they give way and snap backwards too far, anyone else have that?
I feel at the moment and have done for a few months like I am not running on all cylinders, something does feel right. This morning I was feeding my lizard stood still watching her and I felt like I had been doing a brisk walk.
My dad has all sort of problems with his body, all over and like I said had back surgery a few months ago. For as long as I can remember hes been complaining of throbbing pains in his arms and legs exactly what I feel. The other week he was walking up his front steps and his knee gave way, like someone kicked the back of his knee and I said thats what I get.
Doctors done all sorts of tests but not got to a connective tissue problem with him, maybe they havent looked into it...
The most pains I get are random. Really intense sharp knife like pain that pulses or throbs everywhere. Through my fingers, forarms, neck, back, legs all the way to my ankles.
Does anyone else have pectus excavatum and find they have to keep their stomach tense?
I have always kept it tense without thinking, its natural to me and if I relax my stomach I feel my heart beat quite strong and find it uncomfortable...
Sorry if I am asking a lot, never found other people who have an idea of what I feel before lol.
I have my doctors this afternoon and ECG tonight, maybe that will get ball rolling. |
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monster
Expert Marf
Joined: 13 Jul 2010
Posts: 30
Location: manchester
890 Fibrillin
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| Posted: 12:04 pm, Fri 30 Jul, 2010
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hi john, nice too meet you,
sorry to hear what yv been going thru, i have marfans, some off yr symtoms sound very similar to mine, ecspecially the tierdness and pain when walking around shops ect, i get pain in one of my ancles, both knees and one of my hips, the only way i could describe it is ocasional sharp pain, like yr knee or yr hip has given out, and constanst aching, like you'd get if you wr coming dwn with the flu or something like that, somtimes it feels as if yr knees bend too far backwards, does this ring any bels?
unfortunatly the dr's dont always listen, and even with a dianosis, some tend to still fob you off, which can leave you feeling dwn in the dumps and not knowing wr to turn, i would say you need to push yr dr's to refare you to someone, or even different dr's for the different things you have going on, even if it takes a long time for yu to get dianosed with somthing, you can still see ppl to help with yr other symtoms,
good luck, hope you get sorted out soon, x |
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june
Veteran Marf
Joined: 04 Jan 2010
Posts: 128
Location: Roade, Northampton
4016 Fibrillin
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| Posted: 9:53 pm, Thu 29 Jul, 2010
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 John where about in Northamptonshire do you live as i to am from Northamptonshire xx
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Cuddles
Site Support
Joined: 04 Mar 2009
Posts: 1705
Location: east kent
54451 Fibrillin
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| Posted: 8:12 pm, Thu 29 Jul, 2010
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John
In many ways what you are going through is like a jigsaw puzzle in the way everything is mixed up and you do not know where to go / turn next
However soon , with luck , the pieces will start to slot into place , and things will look clearer ,and then you will get the answers you seek
In the meantime don't be affraid to ask questions , no matter how silly you may feel they are , we will do all we can to help , promise
_________________
If there is something wrong , those who have the ability to take action , have the responsability to take action . |
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speedwell
Super Marf
Joined: 20 May 2009
Posts: 241
Location: somerset
8882 Fibrillin
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| Posted: 3:30 pm, Thu 29 Jul, 2010
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hello again John
although we can't give you a diagnosis, we can say when we identify with what you describe you are feeling.
What you describe about standing and sitting and lifting really rings a bell with me.
When i was 22 I had such problems with my back, and I tried to describe it as 'throbbing'.
But everyone was just puzzled and ignored me.
However, one has to remember likewise that there are always lots of different conditions that share one or several of the same symptoms; and also that both very mild and more serious conditions and illnesses can too share similar symptoms.
It is good to be able to share thoughts and feelings on a forum like this, if only because waiting for an appointment with a geneticist and then waiting for a definite answer can all take a long time.
I wish you luck, too, with developing a career/job that would require less exertion for you : sounds a good idea whatever.
all the best
speedwell
_________________
"Love is enough" (William Morris) |
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