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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-12-2009, 05:41 AM
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#31 | ||
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Ok firstly Annie- you haven't mucked up my thread.
Lizzie- yes you are right some people do convince themselves they have a disease and then see as many Drs as possible until they find one that agrees with them. I dont care what they call what I have as long as they start taking me seriously and start treating me. I dont find it acceptable to be labelled a loony tune and left to suffer. ( nothing in your post Lizzie has suggested that you think Im a loony tune so I dont want you thinking Im having a go at you, thats not the case, as I completely understand where you are coming from.) What really annoys me is they (drs) disregard my response to mestinon, the ice pack test, my response to neostigmine bromide and a tensilon test. Because it suits them to. If I had another type of disease or mental health issues then fine, but do something. I have now nearly lost three years of my life to this merry-go-round and I want to get off! Sorry Im feeling like an extra from night of the living dead and Im having a moan. I will stop! Love Rach |
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11-12-2009, 01:47 PM
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#32 | |||
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sorry for missing your question before. your question is not weird at all, but actually very smart and reasonable. and you are right that it is somewhat odd to examine the occular muscles of someone who is mostly having respiratory problems, but this is in fact what they do, as they can't do a SFEMG of the respiratory muscles. they can do a RNS of the diaphragm, but the accuracy of this test is quite low, and requires a very experienced person to do that. they can also measure the force generated by the diaphragm directly, using magnetic stimulation of the phrenic nerve (the nerve that innervates the diaphrgm). but this is only done in very few places in the world, requires a specialized center with expertise in neuromuscular respiratory problems, and is a somewhat invasive procedure. alice |
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| "Thanks for this!" says: | Nicknerd (11-13-2009) |
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11-12-2009, 02:23 PM
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#33 | |||
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the bottom line is that the name of an illness is not what matters. if a neurologist is reluctant to call it myasthenia-be it. If he is not eager to start immunosupressive treatment before being convinced that it is indeed indicated-that makes perfect sense. but, he is still obliged to take care of this patient in the best possible way. my son had a seizure. he is a student in the university, and his life is pretty hechtic (like many young students). His EEG was borderline, so the neurologist told us that he is not going to call this epilepsy yet, and he is also not too eager to start medical treatment. yet, he made it very clear that he should not drive for a year, that he should make some changes in his life-style and that he should notify him, if he has another event like this, because if that happens, regardless of the EEG, which is not a "perfect" test, he is going to start him on anti-convulsive treatment. he also sent him for all the nesaccary imaging studies, and showed him a picture of all the famous people that had Epilepsy, and told him that he will be in "good company", with shakespeare, Napoleon, Dostoievsky etc, if he does end up having epilepsy. this made perfect sense to me- not puting a lable of Epilepsy after one possibly provoked seizure. not starting treatment which could be for a very long perid, and carries some side-effects. and at the same time helping him deal with this illness in a positive, somewhat humoristic way, and understanding the impact of this on a 23 year old, who saw himslef as completely healthy until a day before. and giving very clear directions, as well as emotional support in a non-patronizing way. and also understanding the limitations of a diagnostic test. I am quite sure that Rachel would have been content with such an approach, and so would most of the patients who live in this "limbo land". alice |
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| "Thanks for this!" says: | rach73 (11-13-2009) |
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11-13-2009, 12:25 PM
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#34 | |||
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Awe, Alley I'm so sorry you met up with so many uninformed neuros, but it sounds like you needed a specialist in Neuro Muscular diseases. Not all neuros are equal, and its very important to find a neurologist who has experience with MG. It's unfortunate that the neuro who did the antibody test didn't trust the results. One can have false positive, or false negative, and one can also have the antibodies show up one time, and then when the MG isn't in a flare, it not show up.
You're not one of the ones I was referring to, it was actually one in particular really. Once a while back, no one here, there was someone that had some MG symptoms, and many symptoms that were not MG. This person went to some really good neurologists who were very informed about MG. They told her that she didn't have MG, but probably something else. She refused to believe them, and to this day, is still searching for a neurologist who will say she has MG. So actually it was she about whom I was thinking. I thought it so sad, and I did and do believe she has something wrong with her, and is desparate for a diagnosis, but I really personally believe it's probably something else. I do have a wonderful group of neurologist, who are indeed very informed about MG. I know I'm blessed, and I know not everyone has that blessing near by. What I would reccomend is for a person to get a hold of their local MDA, and find out who has experience in MG. (doesn't have to be a neuro, sometimes it's a rhuemotologist (sp?) I wasn't trying to be offensive, or trying to offend anyone. I just don't want people wasting valuable time going in the wrong direction. I want them to feel relief as soon as possible. Much Love Lizzie Quote:
Last edited by Maxwell'sMom; 11-13-2009 at 01:39 PM. |
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11-13-2009, 12:39 PM
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#35 | |||
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Rach,
 I'm really sorry I mentioned it, I really am, as it is not my intentions to make anyone feel uncomfortable, or feel as though someone doesn't believe them. I know you're sick, and I don't want you feeling bad. You hang in there, sooner or later you'll find a doctor who will listen to you, and take the appropriate steps in helping you feel better. Here are some things that have helped me in talking with my doctors. First things first, if you can take someone with you, please do, as they can be the one to ask questions for you if you need. When asking your doctor about different tests and such, explain to them, that you can't go on with these symptoms they way they are at presence. Tell them, that since you were first told about Myasthenia, you decided to read up on it, to see if it did indeed sound like what you had. That it did, and you would like to know what his opinion is on doing this test, or that test...etc. Or, what about trying the med Mestinon? Offer suggestions to him, and this way you are creating a dialog with him/her. And if you take someone with you, let them know of all the questions you want to understand, and this way, they can jump in too, and ask away. In doing this, it will let the doctor know just how serious this is too you, and you need help NOW. And that you are willing to try anything he is suggesting. I had to learn, that It's My body, and I have to take an active roll in getting help, and this means that sometimes, I have to ask a lot of questions, and speak up when I'm not happy at the way the treatment thus far is going. Again, Rach, I'm so sorry, I wasn't trying to hurt anyone's feelings. I really wasn't . It breaks my heart when I see someone battling with a medical issue. Trust me, I have some real serious stuff going on in my body, and I do understand. I really do. Love Lizzie Quote:
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11-13-2009, 01:07 PM
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#36 | |||
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[Alice, I'm going to assume that you are speaking to me. I wasn't directing my post to Rach, I was merely explaining why some doctors are reluctant in saying a patient has Myasthenia.
I wasn't trying to say that her doctor was thinking this of her. Just each doctor has experiences, and that we need to take this into account. I am not in any way shape or form saying that a doctor shouldn't be actively helping his/her patients, just trying to give the other side, to help people understand that the doctor may genuinely believe it's not MG, that's all. Every time we enter a doctors office, we are entering the office of an individual who is human, faults and all. I just don't believe that every doc out there is bad. And I'm sorry, but I'm not going to go bashing doctors. I have some real good friends who are in the medical world, and there is always two sides. My eldest is, at this very moment doing an internship. I know there are bad ones, misinformed ones. I've had some, but I also think we need to know there are good ones out there too. Doctors who want to help, and want to find out what is going on, and want to work for the good of their patients. I was just trying to say there are all sorts of reasons. And at the MG conference a few years ago, they did cover this subject, and explain why doctors were reluctant in diagnosing MG. I didn't say it was right, or wrong, just what the MG expert explained. So Now can we please move on? Lizzie |
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11-13-2009, 01:57 PM
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#37 | ||
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Lizzie, Please don't take offense! I think it was crystal clear what you were saying. No one, especially not me, would ever think poorly of you. There are people who want to think they have MG because it would mean an answer to why they are sick. But then there are those of us - like me - who were diagnosed with MG (because it was so damn obvious) but did run into a situation where doctors were not very nice.
I have had doctors I've known for over two decades. Most of my doctors are amazing. Nurses too. But there are those out there, just like in high school, who act more like gossiping girls or bullies than grownups. It's bad enough to be sick, truly sick. Having a doctor who doesn't respect a patient enough to treat them well is reprehensible. Or who doesn't respect themselves enough. I know there are lots of reasons, including legal ones, why doctors don't diagnose. What is their reason in my case . . . when I've met all their guidelines and algorithms but they still treat me like dung (which is a rhetorical question)? There's no reason good enough. For Rach either. Please don't be upset by each of us being honest, Lizzie. We love you. Annie |
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11-13-2009, 05:05 PM
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#38 | |||
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Thank you Annie, I'm not upset at all about anyone being honest. I just don't want to be misinterpreted. Thank you so much for being concerned enough to say something, I really appreciate it, it means a lot.
Being in limbo, can just about drive a person crazy. I just wanted to let people know what one of the experts said about it, nothing more. I remember when I was in my late teens, and in excruciating pain, and for years the doctors couldn't figure it out. Turned out to be endometriosis, that wasn't found until my late twenties, and then it was too late. So I really do understand what it is like to live with something, and the doctors not being able to figure it out. Pain was my life. And I do mean daily, it was a horrible time. Love you Love Lizzie |
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11-13-2009, 05:09 PM
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#39 | |||
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Is it just me, or does it seem like a lot of ladies with MG also have Endometriosis? I don't have endometriosis, but I've met at least 5 other MGers with it. Is Endometriosis that common, or are they possibly connected? Kinda interesting.
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11-13-2009, 05:29 PM
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#40 | |||
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Nicky, I'm not sure. I know that endometriosis is common, and I have to wonder what an inflamation does to the body for that long.
I have noticed many MG'ers including myself have had either a spinal cord injury, or a staff infection, and then soon afterwards noticed things were odd with their bodies. Personally I think it does play into it. And I've seen articles that have said the same thing, that a trauma can bring about MG. Love Lizzie |
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| "Thanks for this!" says: | Nicknerd (11-13-2009) |
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Hi Everyone
I understand about what you're saying when you say that people need to keep an open mind about their diagnosis. I absolutely agree that that can keep people from discovering what's really wrong with them. I worry sometimes when I read some stories on this and other forums that people are cutting off other possiibilities. On the other hand, I just want to point out that neuros can be wrong. Call me stubborn, but I'm glad I persisted until I finally saw an mg expert who was able, in 5 minutes, to give me an mg diagnosis. I went to 5 neurologists who all told me that I didn't have mg, despite having two positive antibody tests. BUT, they also told me facts about mg, actually absolutely insisted on facts about mg, that I knew were just plain wrong. Things like: there are a lot of false negatives with the antibody test, you don't need a cat scan because mg has nothing to do with the thymus or any type of cancer, mg symptoms never change - once you get a sypmtom it's constant and never gets better or worse, SFEMG is not an appropriate test for mg, SFEMG is an appropriate test for mg and those results trump antibody tests and only need to be done on one muscle, if you have side effects with mestinon than that's a strong indication that you don't have mg. 
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