Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hiya my fellow MG'ers. I'm struggling really bad right now, and am in need of some advice. I got a friend to take me to my neuro appointment yesterday, and it went kind of badly as far as I'm concerned. I had seen him twice before, and he seems like a nicer type. He had me do blood work, which showed nothing, and then an EMG, which hurt far worse then I remember the last one I did, and was "inconclusive".
So this third visit, was to get those results, and he said based on what the fact that he can't find MG, he doesn't feel like it is in his best interest to treat me. This truthfully shocked me, and I feel a bit confused by this. Isn't 50% of the people who have MG seuronegative? How is it any interest of his whether he treats me or not? Shouldn't that be my call?
So I don't know what to do anymore. He says there isn't much else he can do to prove whether I have it or not with being seuronegative, and he feels that my self management is enough to sustain me. And while, over the last 8-9 years, I've perfected how to manage and survive with this, I have no life.
I'm trapped inside most days, I rest most of my days, I'm capable of playing on a computer for a few hours at a time, and watching tv for the same. Cleaning, while I can do it now, which does make me happy, is in spurts. I clean a part of a room, and rest for 30 minutes. Rinse and repeat until it is all done. Cooking I've done well with, but I do sit a lot, and bring the chair to the stove so I can sit and watch it.
Activities are usual, on good days I can go out and have fun, but generally it is at the cost of the next day. I'm so tired of this cycle, and want to change it. I see some of you working, running, functioning quite better then me, and honestly, I envy that. I haven't ran in 9 years. I haven't done anything super physical in the same. I haven't worked in 10 years, and it makes me miserable.
So what would you guys recommend? Should I just do what I've been doing, and accept life for what it is? Am I expecting too much? I don't know how to break the cycle, and well, I'm just so tired.
So this third visit, was to get those results, and he said based on what the fact that he can't find MG, he doesn't feel like it is in his best interest to treat me. This truthfully shocked me, and I feel a bit confused by this. Isn't 50% of the people who have MG seuronegative? How is it any interest of his whether he treats me or not? Shouldn't that be my call?
So I don't know what to do anymore. He says there isn't much else he can do to prove whether I have it or not with being seuronegative, and he feels that my self management is enough to sustain me. And while, over the last 8-9 years, I've perfected how to manage and survive with this, I have no life.
I'm trapped inside most days, I rest most of my days, I'm capable of playing on a computer for a few hours at a time, and watching tv for the same. Cleaning, while I can do it now, which does make me happy, is in spurts. I clean a part of a room, and rest for 30 minutes. Rinse and repeat until it is all done. Cooking I've done well with, but I do sit a lot, and bring the chair to the stove so I can sit and watch it.
Activities are usual, on good days I can go out and have fun, but generally it is at the cost of the next day. I'm so tired of this cycle, and want to change it. I see some of you working, running, functioning quite better then me, and honestly, I envy that. I haven't ran in 9 years. I haven't done anything super physical in the same. I haven't worked in 10 years, and it makes me miserable.
So what would you guys recommend? Should I just do what I've been doing, and accept life for what it is? Am I expecting too much? I don't know how to break the cycle, and well, I'm just so tired.
I look back, and the only thing I would have done differently is not settled with the opinion of my doctor. I am cross at myself for allowing a doctor to give up on me so easily and putting up with ridiculous symptoms that went untreated over many years. I realize after the fact It is NOT normal to feel like a 90 year old when you are 45. It is NOT normal for hands to fatigue completely before finishing peeling a potato!!!!!
I've heard of people going through 6 or more neuros before they had much success. But you should NOT have to sit down at the stove housebound - you don't even look anything close to being a pensioner to me! And even my 80 year old mother-in-law has more muscle strength than that!
Don't give up - big shocks are a part of the sero negative package - Please find another doctor who WILL treat you.....
Calmday XXXXXX
I pray that you are able to find a doctor who understands and provides treatment. Wish you were here in Dallas .
Annette
Be well,
Have a great day
Ann
I am glad you checked in with us and hope you will get some answers SOON!!! This is no kind of way to live... NO!!!
'Hugs and hopes for better days!! Rosie
Fact is, I don't even know if it will work, as 8 and 1/2 years ago when I did try it, it did nothing for me. But me simply doing nothing about it seems silly now. Before, I didn't have health care, nor a ex-wife that cared, now, I do have health care, and am on my own so to speak. So I figure, if I'm going to be in control of my life, I should be in better control of this. Doctor's astound me in their ignorance. I don't know anyone who would want to risk their health to be on these drugs, unless they truly needed them.
You have to be your own advocate, especially with something like mg.
I did finally get a positive test result, not for mg, but for Lems. But if I had not kept going and looking for treatment, this would not have come about.
Hang in there and keep fighting for the life you deserve.
That was not shouting, it was a big 'ol warning. This forum doesn't have blinking lights ;) You don't have the energy to fight, sometimes it seems futile, but fight you must.
I'm going to be long winded here so you understand. You have to keep searching for an answer and not give up, because you may end up in an emergency situation that could kill you or at least be very harrowing and frightening. Don't stay with one doctor, each one seems to have different knowledge and opinions about MG. No doctor has the right to tell you your life is fine if you're functioning at such a low level. Thank the doctor and move on to the next one, because eventually you will find one that has an answer for you. Document your symptoms to help doctors understand what you go through.
That was the last twelve years of my life speaking. And looking back I've had symptoms for twenty years. Twelve years ago I started asking what was wrong with me and was sent to doctor after doctor whom I felt laughed at me. Even 'experts' at Stanford laughed. They looked at tests (all negative), but they never looked at the human being who was suffering. So I hid. I coped. I survived at a basic level with help from family. My life shrunk. Giving up was the worst decision of my life.
Two years ago I had an excruciating abdominal pain which left me howling on the floor, and within hours was in emergency surgery for a rupture that would've killed me. The doctors didn't know me, and only had my mom's word that I was in a weakened state. Coming out of anaesthesia was frightening, and they acted like I was a petulant teenager not wanting to respond to them. They sent me home and within three hours I was back in the hospital because I couldn't breathe. Nine days with nobody understanding my weakness, inability to eat much, etc. They were very good to me but I was an unknown. The whole ordeal was very frightening.
Since then my body has been spiraling out of control (stress, new meds, who knows why), and I landed up in the ER four timesfor breathing difficulties, again with them not knowing what to do. This last time I was gasping for breath so badly that they admitted me for several days, then diagnosed me with MG via Mestinon trial because they couldn't locate a Tensilon test. For three days I feared I'd suffocate, but they gave me my first Mestinon pill and a monster let go of my chest so I could breathe. Now I feel I have an answer but the neuro I started with after that has discounted everything those doctors did for me, and told me my problem is that I need to move more and lose weight. I feel like I'm at square one again, except that Mestinon is working and I know I need to keep trying now because I am very close to getting the help I need so desperately.
Just two years ago I thought I could handle it on my own, using rest as my only medicine. Sometimes I'd get scared, but resting (hours, days, or weeks) would always fix it. Resting still makes it better, but never fixes it anymore and I keep going down hill. I accepted it for so many years, and if I accept it now I know my life will be over either figuratively or literally.
I'm having to fight the fight of my life to find a solid answer and get treatment now, and it's incredibly difficult to do that when your symptoms are nearly uncontrollable. You just never know what will change that will make your symptoms rule your every moment.
Please do not wait until you don't have any fight in you, because that's precisely the time you'll be forced to fight.
And never forget the kindness and support of people here :)
I have been unwell for nearly 3 years I have gone to 5 neuros and their answer--your symptoms are atypical---you have fibromyalgia,you have a rare neuro-muscular disease that defies definition---you are overweight and unfit.All this from supposed specialists.
I am stubborn and would not give up.Eventually I found a neuro who is prepared to look outside the square and is eliminating other diseases first.I have had tests todayand the results will determine whether she will treat me for LEMS or if it isn't that she will give me more aggressive treatment for MG.I too am seronagative.
Please ask around and seek out a person who is willing to listenv to you will treat you on clinical observation not fallible tests.Find someone like i have who says i haven't got a quality life and is prepared to treat and improve your life.The longer you languish the harder it will be to pick yourself up.Learn from me.Fight Tesinato
You need to find out what is wrong if the doctor doesn't think it is MG--he/she should refer you to a doctor who can do some tests for other problems just in case it is something other than MG.
I think that something like 15% of MG diagnosed people are seronegative.
Probably one check on yourself is if you do better with Mestinon--if so, it pushes the diagnosis heavily in the MG direction. If not, it doesn't rule it out, but makes it reasonable to think there could be something else wrong.
There are many conditions that have symptoms somewhat like MG--especially the weakness and fatigue. Sometimes it is a mixture of several conditions. There are so many diseases that doctors dismissed as "mental problems" before finally finding some tests or treatments that worked, that one has to be really persistent to get to the root of the problem and not be ignored as a "whiner."
Good Luck