|
BeckerMD Forums |
|
|
|
|
|
|
|
|
|
|
Subject :University of Chicago..
2008-01-30 05:51:35
|
|
|
| MATT2003 |
|
| Ninja |
 |
Joined: 2007-03-28 00:42:19
Posts: 81
Location: Chicago,IL |
|
|
|
|
|
|
I wanted to mention that I went to UC yesterday and met with a cardiologist who specializes in DMD and BMD. I had a EKG and Eco cardiogram. i had a few issues so they recommend a format of drugs that should nuetralize and increase the Left ventricals effiecentcy. This is a common area where most BMD pateints have issues. This DR was great! She travels to europe once a year to get info and updates because at times as you know europe is unfortunatley ahead of the game with drugs and testing. I have read allot of info about Italian science and lab work being done. Anyways with this cocktail they say this could prolong and maybe push off any cardiomypathy. I asked her about CQ10 and she said that it wasn't necassary and that this would be much better approach. I wanted to throw that out and if anyone has questions let me know. I have learned that some of the MD clinics and neurologist are slow or behind on this and I was told if I waited any longer I wouldn't of had the chance that I have now. BMD patients have atleast an 85% of inheritance with heart issues. |
IP Logged
|
|
Any questions feel free to contact me. |
|
|
|
|
|
Subject :..
2008-01-31 01:19:06
|
|
|
| MATT2003 |
|
|
| Ninja |
|
Joined: 2007-03-28 00:42:19
Posts: 81
Location: Chicago,IL |
|
|
|
|
|
|
Kevin,
Did you go see her? My brother is seeing a Cardiologist due to an incident and he has him on the same recommendations as I was given. I also had 3 cousins go to here. I also talked to other cardiologist and they didn't know how to deal with MD. I know that Caution is the key but I reasearched the meds and I only have concern for 1 out of the 3. I think you still have my email. Send me a response there.
Matt |
|
IP Logged
|
|
Any questions feel free to contact me. |
|
|
|
|
|
Subject :..
2008-01-31 04:34:57
|
|
|
| kgoodfellow |
|
| All Star |
 |
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
|
|
|
|
|
|
Second opinions are critical, no matter which doctor is treating you. My experience with her was good, but a few things she suggested to me have been contradicted several times by other doctors I've seen. Different advice is actually quite common, and MD folks should be aware of this. She is a fine person and I'm sure she will do everything she can for you and have your best interest in mind. |
|
IP Logged
|
|
K. Goodfellow |
|
|
|
|
|
Subject :..
2008-01-31 04:48:42
|
|
|
| MATT2003 |
|
|
| Ninja |
|
Joined: 2007-03-28 00:42:19
Posts: 81
Location: Chicago,IL |
|
|
|
|
|
|
I agree and I don't want to come off the wrong way. I have gone down many roads with DR's that don't understand or think they do. I have been to many clinics with the same old same old. That's why I said I sat back for 2 years before I want to her. But don't get me wrong I appreciate you comments and concerns. We all have to watch out for each other. I checked into my prescriptions and its only 2 and the 3rd one I'm not getting. So we will see... Take it easy. |
|
IP Logged
|
|
Any questions feel free to contact me. |
|
|
|
|
|
Subject :..
2008-03-12 09:44:44
|
|
|
| Samuel |
|
|
| Newbie |
 |
Joined: 2008-03-12 04:26:10
Posts: 2
Location: |
|
|
|
|
|
Hi I'm new here, I was diagnosed with BMD in 82'
I dont really have any drug break throughs to tell yo about. My cardiologist has prescribed Coreg and Altace which I've been on for a couple years. Within the past year my normal 55% heart function was down to 25% in Feb. March 11 I had an ICD implanted. The surgery went fine and I was home the next day. A bit of pain where implant is but tylenol helps releive the pain. Now comes the fun part Well I was home for 2 days and during those days I was on antibiotics called keflex to prevent infection. Friday afternoon I came down with a fever of 101.6, kinda high so I called my doctor and he said go to emergency and we'll take care of you. So I go. I get there at 3:00 and the waiting game begins. O yeah I was checked on every so often and was asked is there anything we cant get you..yeah, how bout some water I didnt see water til 10:00. So now I'm pretty dehydrated. Finally they bring me upstairs to find out what is wrong. The doctors aren't sure if the ICD is defective. So they're pumping me full of antibiotics. My fever spikes and retreats then spikes again, this goes on all nite. Saturday the diarrhea starts, "OH YEAH" I'm having fun now, this goes on all nite, into Sunday, ahhhhhhhhhhhhh. So Monday morning I go for a type of echocardiogram. Rather than using the ultra sound, where I'd be on my left side where the difib.,is located, thus putting me threw an uncomfortable test, they use a kind where they run a camera
down your esophagus and they can see the heart even better threw the esophagus wall, to check it out. When they do that they knock you out with some serious drugs. I'm worried I'm not gonna wake up, but obviously I do. Test comes back negative, the device is running perfectly. So now they change the antibiotics' to a different one. This kinda helps a little.
So I've seen a shitload of doctors now, heart specialists, difib. surgeons, infectious disease are the guys that figure it out. The antibiotics are causing this. In all this time they've taken I dont know how much blood for blood work and cultures and drinking it for all I know. They take me off the antibiotics after weaning me off for a bit. I really didn't eat much in this time , just couldn't keep anything in. After being off the antibiotics for a spell my appetite is coming back and I'm eating what I can. Basically I had colitis or c-diff it attacks the good bacteria in your colon and runs it outta town......(pun intended) It wants to be a constant tidal wave where roots can not be planted. Nasty SOB. So yes the doctors gave me this cuz they didn't know what they were dealing with because the symtoms were'nt there. Hey hospitals can be a dangerous place. With proper diet and care I can overcome this. I know I can. so now I be home again.
I know that was a bit long and I'm not trying to scare anyone off by getting an ICD. It'll keep me around a bit longer, besides my wife isn't done arguing with me...lol :mrgreen:
Oh recently I was given a cpap to help me sleep better, so far so good just gotta get used to wearing the mask. |
|
IP Logged
|
|
Live each day to the fullest.... |
|
|
|
|
|
Subject :..
2008-03-12 14:09:07
|
|
|
| kgoodfellow |
|
|
| All Star |
|
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
|
|
|
|
|
|
Hey Samuel
Welcome. I'm sorry to hear your horrible ICD experience.
I had my ICD put in last Summer and it was a non issue for me. I stayed overnight, but went home the next day. I couldn't really use my left arm fully for about 8 weeks, so that the implant would fully heal and not pull out.
However, I do feel your concern for hospitals. I too consider them to be a dangerous place for us BMD folks, since so few people have had experience with us folks. Especially anethesia...that can be life and death and I'm not always confident the drs know what they are doing. Very often they are confidently wrong..very scary.
Anyhow, hope you're doing better. I hardly notice mine anymore 9 months later. |
|
IP Logged
|
|
K. Goodfellow |
|
|
|
|
|
Subject :..
2008-03-17 14:08:22
|
|
|
| Scott |
|
|
| Newbie |
|
Joined: 2008-03-17 13:53:30
Posts: 1
Location: |
|
|
|
|
|
|
Hi
My name is Scott I was digonosed with Beckers in 1996 and i just joined today, and was just wondering about CQ10.
What are the benifites for takingCQ10. |
|
IP Logged
|
Regards
Scott |
|
|
|
|
|
Subject :..
2008-04-03 09:05:17
|
|
|
| Meisa |
|
|
| Experienced |
 |
Joined: 2007-11-14 11:37:47
Posts: 39
Location: |
|
|
|
|
|
|
Hi Scott,
From everything I've read, it seems like it has been proven that Coenzyme Q10 helps with heart conditions and since skeletal muscle is similar to the muscles in the heart, it is thought that it may help. Below is the list of other things that the researchers believe it's good for.
Improve immune function in individuals with immune deficiencies (such as AIDS) and chronic infections (such as yeast and other viral infections)
Increase sperm motility leading to enhanced fertility
Be used as part of the treatment for Alzheimer's disease
Reduce damage from stroke
Boost athletic performance
Enhance physical activity in people with fatigue syndromes
Improve exercise tolerance in individuals with muscular dystrophy
Research in all of these areas is underway to determine whether CoQ10 can be safety and effectively used in people with these health problems.
I have a 12 year old who has been diagnosed with BMD. I'm debating on giving Coq10 to him but am not sure of the recommended dose. I will find out from his pediatrician because the MD docs don't think there is enough proof out there that it helps. I figure, it can't hurt as long as he takes the right dosage.
Hope this helps.
Meisa (Jordan's mom) |
|
IP Logged
|
|
|
|
|
