|
BeckerMD Forums |
|
|
|
|
|
|
|
|
|
|
Subject :manifesting carrier?..
2007-03-24 14:25:12
|
|
|
| Laura |
|
| New |
 |
Joined: 2007-03-15 23:29:45
Posts: 8
Location: |
|
|
|
|
|
|
A younger sister and myself have symptoms, and two other sisters don't seem to have symptoms. I work in a restaurant so am on my legs for hours. It can be very physically demanding. I think the exaustion I feel in my muscles after a busy night at work is real, but then I wonder if some of the symptoms might be in my head. I never discuss how I feel with the Doctor, because my 12 yr. old son and my father have BMD. |
IP Logged
|
|
|
|
|
|
Subject :..
2007-03-27 03:58:46
|
|
|
| bmdmom |
|
|
| Ninja |
 |
Joined: 2007-03-07 02:22:22
Posts: 79
Location: |
|
|
|
|
|
|
Laura, I'm not a manifesting carrier (thus far). I did use to run track in junior high - I was a sprinter. I never could run long distances. There came an age where I suddenly didn't run like I'd used to (around 16)- and became very succeptible to pulled muscles and such. I'm not athletic at all anymore. So, who knows.
It is important that you watch your heart - or so I've read. Carriers are suppose to have an echocardiogram and ultrasound of the heart done. I've had mine checked, so far so good.
Anyway, I wanted to welcome you here! |
|
IP Logged
|
Tanya mom to two BMD boys
Parent Chat Moderator |
|
|
|
|
|
Subject :..
2007-03-27 12:57:04
|
|
|
| dylansmom |
|
| Experienced |
 |
Joined: 2007-03-24 04:37:07
Posts: 21
Location: |
|
|
|
|
|
|
This is so new to me, i was never told that carriers could have symptoms. i have had trouble with leg and foot cramps for awhile. I to used to work in a restaurant and can relate to the exhaustion in my legs. I have aches in my legs and hips if i stand for too long. I have an aunt who was having similar problems though she isn't a carrier, i didn't realize women could get bmd i thought we were just carriers. Seems like i have been misinformed. My sister and were tested as carriers when we were pre teens and both are carriers. |
|
IP Logged
|
|
|
|
|
|
Subject :..
2007-03-27 23:41:48
|
|
|
| bmdmom |
|
|
| Ninja |
|
Joined: 2007-03-07 02:22:22
Posts: 79
Location: |
|
|
|
|
|
|
I'm pretty sure that if you are a manifesting carrier then your CK level will also be slightly elevated. But considering our boys CK levels aren't as elevated as say the DMD boys - I'm not sure how this plays out with BMD vs. DMD carriers. At any rate - if I've read articles correctly its rare for the carrier to have symptoms - and those that do - the symptoms aren't usually progressive, but rather mild and stable. This is all based on things I've read and interpreted from the PPMD or the MDA websites. |
|
IP Logged
|
Tanya mom to two BMD boys
Parent Chat Moderator |
|
|
|
|
|
Subject :hi everybody..
2007-03-29 06:37:46
|
|
|
| joanne |
|
|
| Expert |
 |
Joined: 2007-03-21 05:39:41
Posts: 54
Location: |
|
|
|
|
|
hi everyone,
i am a carrier of bmd, and not a manifeting carrier. i was told that a carrier would never have symptons of bmd. what tests would they do to check for a manifecting carrier. the reason i ask is that my older sister has a lot of problems with her legs and muscles but was told of the genetic nurse that carriers of bmd do not get any symptons. so i am a little confused about what i read and what i have been told.
i found out just over a year ago that i was a carrier of bmd after my 4 year old son was diagonsed with bmd.
hope everyone is ok and i am glad i have found a good site |
|
IP Logged
|
|
Last Edited On: 2007-04-05 16:10:49 By j for the Reason |
|
|
|
|
|
Subject :manifesting carrier link..
2007-03-29 06:59:43
|
|
|
| bmdmom |
|
|
| Ninja |
|
Joined: 2007-03-07 02:22:22
Posts: 79
Location: |
|
|
|
|
|
|
Here is a link from the MD Campaign about manifesting carriers -
http://www.muscular-dystrophy.org/about_your_condition/manifesting_carriers/index.html |
|
IP Logged
|
Tanya mom to two BMD boys
Parent Chat Moderator |
|
|
|
|
|
Subject :..
2007-03-29 07:14:35
|
|
|
| joanne |
|
|
| Expert |
|
Joined: 2007-03-21 05:39:41
Posts: 54
Location: |
|
|
|
|
|
|
thanks tanya |
|
IP Logged
|
|
|
|
|
|
Subject :bmd female..
2007-03-30 22:37:34
|
|
|
| s.mtaphouse |
|
| Expert |
|
Joined: 2007-03-19 21:22:57
Posts: 47
Location: |
|
|
|
|
|
|
hi all
when my son was diagnosed with bmd at the age of 12 (he's 26 now) we were always told it was a male only problem. but i think i always knew from then on that i had bmd & wasn't just a carrier, i had the same large calves & suffered cramps. i was diagnosed around 4 yrs ago from a blood test. i was told my symptoms would be much milder from my sons which for me is true as i was very active when i was younger (i used to walk miles but my son has always had problems with walking). its only since i hit 40 a few years ago now that i have slowed down a lot ( cramps more often, walk slower with pain in calves but once a get through the pain barrier i can keep going) i am 47 now & still very active. no other known sufferers in my family so it is nice to find a site where i am not alone.
thanks shaz |
|
IP Logged
|
 |
|
|
|
|
|
Subject :..
2007-04-18 02:12:02
|
|
|
| Rhonda Bliss |
|
|
| Experienced |
|
Joined: 2007-02-27 08:21:26
Posts: 35
Location: |
|
|
|
|
|
|
Both my mother and I are confirmed carriers and we suspect that my sister might be- Both my mother and myself suffer from muscle fatigue with overuse. I am extremely active, but have noticed over the last couple of years that the things that never use to bother me, now do. I also suffered from a lot of lower back pain, achiness if I sit too long in one position, I get cramps in my calf and feet. I also have large calf muscles. For a long time I just thought that is what happens when your 36 and have 3 kids and a FT job, but I am not so sure. I did have my ck checked which was normal, but a normal ck is not a true indicator of a manifesting carrier, like our boys those ck levels eventually return to normal or near normal over time.
I have not had a heart evaluation done as my insurance won't cover it- and they told me to plan on it being nearly $1000.00.
I just finished paying $1000.00 for my DNA testing -which again my insurance didn't cover! sorry for that venting.
Take care,
Rhonda |
|
IP Logged
|
Warmly
Rhonda
Mom to Aaron-(exon 48 deletion) age 10 Dirtbike rider & video game whiz! |
|
|
|
|
|
Subject :I never knew any of this..
2007-04-21 01:12:40
|
|
|
| kgoodfellow1 |
|
| New |
|
Joined: 2009-08-06 13:27:24
Posts: 0
Location: Denver |
|
|
|
|
|
|
I have known as far as I can remember that I was a carrier, my dad has BMD. In school I had problems keeping up with the other kids when we had to run and stuff. I still get weak when I walk alot. I never knew that carriers had problems too! Could that weakness I have be because I am a carrier? My son just had the CK test done and his levels where 323 and now they are doing the DNA test but they told me that because it has been so long since he had a shot or anything like that, he now has a 99% chance of having BMD. He also has a heart murmur like his older sister. Because she has a murmur could she also be a carrier? I thought that I know alot about this but I am finding out stuff that I never knew before. |
|
IP Logged
|
|
|
|
|
|
Subject :..
2007-05-30 08:12:24
|
|
|
| Roxanne |
|
|
| All Star |
 |
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
|
|
|
|
|
|
I'm currently awaiting my DNA results to see if I too am a carrier. I should get the results this week. I haven't thought about the results at all since my blood was taken. My father asked if I had gotten the results and my reply was this. For me it doesn't matter what the results are, it's not going to change the fact that Nicholas has BMD. Does it really matter where it came from? If i am a carrier I did not give this to my child on purpose. If I knew I was a carrier I wouldn't have two wonderful little boys, Nicholas is a special little boy, I would not change him for the world. The results of this test doesn't matter to me.
Roxanne. |
|
IP Logged
|
|
Roxanne Mom to Nicholas (10) with BMD |
|
|
|
|
|
Subject :..
2007-06-06 00:25:09
|
|
|
| Roxanne |
|
|
| All Star |
|
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
|
|
|
|
|
|
I just got the results of my DNA test and I am a confirmed carrier of BMD, I have the same deletion as my son. I was thinking there would be a good chance that the results would come back stating this and as per my last post, it didn't really matter to me. But now, i'm feeling like I just got pushed in the stomach. I guess it matters after all!! |
|
IP Logged
|
|
Roxanne Mom to Nicholas (10) with BMD |
|
|
|
|
|
Subject :..
2007-06-09 07:23:41
|
|
|
| Rhonda Bliss |
|
|
| Experienced |
|
Joined: 2007-02-27 08:21:26
Posts: 35
Location: |
|
|
|
|
|
|
Hi Roxanne,
Sorry about that. I know what you mean- I was certain this was an "aaron thing" so when I got the word I felt shocked, quilty, but also a connection to my son that I would use to make sure he never felt alone in this- I know that sounds weird, but it made sense at the time. Since then I have started to pay closer attentiont to my own body and have noticed symptom that many carrier moms talk about. Muscle fatigue, exercise intolerance, and shaky/trembling muscles when I do heavy lifting etc. Also as active as I am, those first few steps of the morning are brutual. I feel like every muscle is stiff and screaming!
Anyway- We can't fight what we don't know about- so now you know.
Try CoEnzyme Q10 50mg daily- that helps a great deal with muscle achiness and fatigue for me.
Rhonda |
|
IP Logged
|
Warmly
Rhonda
Mom to Aaron-(exon 48 deletion) age 10 Dirtbike rider & video game whiz! |
|
|
|
|
|
Subject :..
2007-06-09 07:38:10
|
|
|
| Roxanne |
|
|
| All Star |
|
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
|
|
|
|
|
|
Hi Rhonda, that's how I feel. I was so sure that this started with Nicholas as we have no family history of this disease! The results was a punch in the stomach for sure, but you can't beat yourself up over something that is out of your control. I've been a carrier of this disease my whole life and didn't know it! I will look into taking the Co Q10 for sure!
Thank you |
|
IP Logged
|
|
Roxanne Mom to Nicholas (10) with BMD |
|
|
|
|
|
Subject :..
2007-07-19 03:45:57
|
|
|
| Roxanne |
|
|
| All Star |
|
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
|
|
|
|
|
|
As a confirmed carrier of BMD. I have an appointment on August 16th to see a cardiologist. We'll see how it goes. |
|
IP Logged
|
|
Roxanne Mom to Nicholas (10) with BMD |
|
|
|
|
|
Subject :..
2007-07-30 06:16:30
|
|
|
| jen |
|
|
| Newbie |
 |
Joined: 2007-07-23 22:51:20
Posts: 1
Location: |
|
|
|
|
|
|
Im a carrier of DMD but have found it very imformative about manifesting carriers (as there are a lot of similarities).
I've had muscle cramps in my legs all my life and have wondered if this was a symtom of manifestation?
recently my cramps have got worse and i have never been good at sport of particalry strong. I also had very high ck levels when i got tested for being a carrier.
Jen |
|
IP Logged
|
|
|
|
|
|
Subject :carriers of BMD and fatique..
2007-08-12 23:19:51
|
|
|
| Roxanne |
|
|
| All Star |
|
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
|
|
|
|
|
|
Hi everyone, Hope your all have a great summer! I have a question for other carriers of BMD. I'm wondering if you have noticed this. We were at a wedding this past weekend where my son Nicholas was the ring bearer. Anyway, Nicholas & I were dancing and I noticed after the 2nd dance my legs were really tired and I really needed to rest. Nicholas wanted to keep going, he wasn't tried at all, I couldn't believe that I was tired before him and he wanted to keep going where I wanted to rest. Anyway, I put my tireness to one side & went out dancing with my son. It was great dancing with him I enjoyed every moment of it, I couldn't help to think of how long this will last. Maybe the next wedding he attends He may not be able to do that. I have also noticed that after a flight of stairs my legs are really tired. |
|
IP Logged
|
|
Roxanne Mom to Nicholas (10) with BMD |
|
|
|
|
|
Subject :..
2007-08-13 09:33:11
|
|
|
| Laura |
|
|
| New |
|
Joined: 2007-03-15 23:29:45
Posts: 8
Location: |
|
|
|
|
|
|
Well I haven't been dancing for a long time!, but I know exactly what you are saying about stairs. I can get up them without to much difficulty, but that first couple of steps at the top of the flight are shakey.
I can't tollerate open back shoes anymore. When buying shoes I look for the lightest pair I can find.
Watching your son dancing, having a great time at the wedding must have put a big smile on your face. Good for you, keeping the pace! |
|
IP Logged
|
|
|
|
|
|
Subject :..
2007-08-27 10:38:40
|
|
|
| dylansmom |
|
|
| Experienced |
|
Joined: 2007-03-24 04:37:07
Posts: 21
Location: |
|
|
|
|
|
|
Hi Roxanne, I'm wondering how your cardio appt. went? I've been thinking i need to talk to my doctor about the heart problems associated with BMD and how that affects me. I'm worried he won't really have a clue what i am talking about. I don't know how else to get these things checked out. |
|
IP Logged
|
|
|
|
|
|
Subject :..
2007-08-27 22:18:47
|
|
|
| Roxanne |
|
|
| All Star |
|
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
|
|
|
|
|
|
hi Dylan's mom, My appointment went ahead on the 16th of August for a scheduled EKG but they as quoted "were picking up too much of an interferrance" :roll: after 2 1/2 hours of changing all the wires, changing machines and rooms I came away with nothing done. :twisted: I was not a happy camper when I left the hospital that day. They told me they would have the doctor take a look @ the reading & he will decide if they will call me in for another appointment (EKG). I have another appointment scheduled for September sometime for a Echocardiogram. We'll see how that one goes if it does at all lol. Anyway, I would mentioned to my family doctor about having those things done for yourself, if the results are normal then all good; no need to get checked for another 5 years from what I understand. Good luck with it. |
|
IP Logged
|
|
Roxanne Mom to Nicholas (10) with BMD |
|
|
|
|
