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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-08-2013, 11:28 AM | #21 | ||
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Hi there, just popped in and read (parts of) your story.
I cannot tell tou if you have MG, or another disease. It's obvious you've something going on, and like others already said, these diseases are sometimes very hard to diagnose. Just as psychological ones are. The can overlap a great deal, and sometimes even come together and affect one another. It is very true that, even if it is some psychological problem, that it is real too! And that it is not a question of willpower or something like that, whether it is a psychiatric disease or a neurological. You need help. Because, besides the fact I personally think your story sounds a lot like MG, let's just say you do not have a neurological, but a psychological problem. One that gives you severe muscle weakness, breathing issues, shaking and whatever more. This is real too, and needs to be taken seriously! If a patient bleeds, will you only treat it if it is caused by a typical physical disease? And send him home with some valium, lithium, amitriptylin if it is caused by a mental thing and think they just need to talk and "get over themselves". but the neurologist said they are lasting symptoms and don't just go away. Maybe that's true. Anyway I wanted to say the following. I do not have typical MG. Sometimes even on a doc's appointment I start with ptosis, after ten minutes it's gone and at the end it's back again. My talking can be normal or drunk or not even able to make a sound: this can also vary between only minutes!! And not even related to the usual "use the muscle - tire the muscle" process. My symptoms can be lasting, a simple phonecall can make me weak overall for several days! But sometimes my symptoms fluctuate between minutes. So they're definitly not always lasting for hours and hours. I think I must be thankful I'm seropositive! Btw, of course you have multiple psychological stuff going on, who wouldn't?! Having a problems with your health always comes with psychological issues. So you can survive! I always think they (you know, GP's and all kinds of specialists except real psychiatrists) give a psychological diagnosis way to soon. Without any good testing, they tend to give (especially woman) diagnoses like depression, conversion disorder, emotional problems etc. The ones I got before the tested my blood on MG? Well, without any testing they dianosed me with depression, eating disorder, anxiety, and even one GP who I spoke once on the phone diagnosed me with borderline personality disorder! Because of the fluctuating symptoms, which of course they thought I was faking (?!) But, then again: my reumatic disease was "lazyness and lack of initiative" and my thyroidproblems "puberty". And, if you have one of those diagnoses -whether correct or not- most doctors tend to push every symptom you come with on the little psychological-pile. It's easy to do! Btw, do not be afraid to try the meds even if it's not sure if you have mg. The first one they try (mestinon) isn't a heavy drug. Be careful, I wish all the luck! |
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"Thanks for this!" says: | bizzymum42 (08-11-2013) |
08-08-2013, 02:53 PM | #22 | ||
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Hello Ravenclaw If we are going to comment, it's important that we read posts in their entirety. In that way, we can then, help support each other--not diagnose each other.
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08-08-2013, 08:17 PM | #23 | |||
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Hi Fortunatos...I think it is equally important to quote posts in context rather than just a line here and there that have a totally different meaning than they did in the body of the post!
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~Chemar~ * . * . These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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08-09-2013, 04:05 AM | #24 | ||
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I said (parts) because it is 3 pages long, maybe I mist one. I probably didn't but just to be sure. I have severe MG so all the words and stuff tend to blend. I did not diagnose?!? I said it is normal to have psychological stuff going on. Because it is! Like I said, it is normal to be anxious, stressed and whatever more if you have health problems. It is not a diagnosis.... Please read my post again before you comment. And what Chemar said, why quote my lines totally out of context? "if we are going to comment". We? Well, I was back here because I thought I could help a newbie. I'm sorry, won't do it again. Good day. Last edited by anon6618; 08-09-2013 at 04:26 AM. |
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08-09-2013, 06:38 AM | #25 | |||
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Quote:
thanks
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~Chemar~ * . * . These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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08-09-2013, 07:56 AM | #26 | ||
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08-23-2013, 06:41 PM | #27 | ||
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I'm back from another neurology appt. I had the EMG today and all my blood came back. Everything is negative. I take this as great news, so far, because my symptoms also seem to be gone. The neurologist said I look great. I feel great too. This has been for about a week now that I feel great.
I would LOVE to put this all behind me. The neurologist said "the door is still open" to MG; however its a slim margin of a chance that I have it. She thinks its possible I'm just starting to have MG - again however slim. She said she wants to see me right away if any symptoms come back and she will try mestonin. If that doesn't work, I'm off to the big hospital in Davis. We have a game plan...so that's a relief at least. I'm feeling blessed. The neurologist also said there is a lot they don't know, especially in neurology. She didn't have any other explanation for my symptoms. Would be nice to know what happened. I'll have to be okay with not knowing for now. I drove 90 miles today in the car. Haven't been driving very far up 'till today. FREEDOM! Heck of a way to spend my summer break, as I'm now back to the school year with a crazy schedule next week. Working hard to keep a positive outlook. I learned to appreciate my garden, home, family, and being still for a while. Thanks all so much! I'll be cautious about my symptoms... Jennifer |
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"Thanks for this!" says: | cait24 (08-24-2013) |
08-24-2013, 08:21 AM | #28 | ||
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You ARE very blessed
For someone to be able to put MG like symptoms behind them forever - or at least even for a while is the biggest blessing there is out there. I somehow climbed out of my own´myasthenic straight jacket´after being in it for at least 5 years! It has been back visiting, and so I´m being very very careful now and also vigilant of my body´s needs like never before. We also have a back up plan which makes much more sense than any of the previous ones that were in place. Enjoy this most precious time Anacrusis Last edited by Anacrusis; 08-24-2013 at 11:28 AM. |
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"Thanks for this!" says: | bizzymum42 (08-24-2013), cait24 (08-24-2013) |
08-25-2013, 03:38 PM | #29 | ||
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Bizzy Mum,
I had an episode somewhat like you described. I rushed to the ER, described my symptoms; weakness, legs and arms felt like blocks, Diaphragm feels heavy and had weird movements especially my extremities and had difficulty holding up my head. I also had very irregular movements, not shaking, more like jerky trembly movements of voluntary muscles. I followed up with my neurologist but the ER doc made no mention of the jerky movements, said I was being seen for "leg pain". Grrr. It lasted about a day and the only precipitating factor I could think of was the night before I had gotten my hair dyed. I am extremely sensitive to Black rubber and thought perhaps it could be a reaction to the hair dye. ??? Another thing I noticed was that I started very easily. I have been worked up for MG and Congenital MG (only had dok7 testing which was negative) my hmo wont' do any further testing. I believe I have a type of CMG and have gone as far as emailing Dr. Maselli at UC Davis. He suggested I go to San Diego, but I have an hmo that won't allow me out of network, so I would have to pay out of pocket which at the moment I can't afford. Your symptoms seem so much like mine. I would love to compare notes regarding what exacerbates your symptoms, triggers, what you've tried, etc. |
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09-05-2013, 05:37 PM | #30 | ||
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Quote:
Swapping stories would be great. I'm sorry you're going through this and have many doctors and still no answers. I wonder how you came up with CMG? Are the symptoms different than with MG? I wonder if that's an avenue to look down for myself as well. Yes, I thought my extreme weakness was possibly from taking supplements, which I no longer take and stopped taking as soon as I couldn't lift myself off the couch. No doctor thought there was a correlation. However, I did read a study on Myasthenia Gravis Foundation website (its a document for doctors about drugs) that magnesium in contraindicated in MG. Prior to my symptoms, I had just started taking Magnesium 400mg/day for PMS. I counted and seven pills were taken. Possibly enough to build up too much in my system? My symptoms are mild. I have moments of fatigue and weakness. Today my eyelids seemed to want to close and felt the onset of fatigue after a long morning, but I rested and symptoms stopped. I put my feet up, drank water, read a good book, let the kids watch a TV. When I have more fatigue - like last Friday during an evening meeting - it feel like I lose my smile. Doing too much and stress are triggers, so far as I can see. I'm still climbing towards better and better. Thought it was gone...better and better is a better description. Thanks for chiming in! Jen |
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