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...
Hi all,
It has been a month since I saw my family doctor and yesterday I was at the end of my rope so I called and got in right away.
I told him how many new symptoms have come on in the last few weeks such as short of breath, neck fullness, gaggy feeling, fullness under my breast bone, trembling legs, hoarse voice at times, hard to talk and even greater fatigue.
I asked him if my AChR had come back. He said "yes and it came back negative". I asked about doing a MUSK and LRP4 and he told me "there is no point, they are extremely rare, the AChR is most popular and with it negative, I can rule out MG".
When everything started back in January my symptoms were a little more like MS, like vertigo, balance problems, numbness in limbs etc.
Lately they seem to be more like MG.
MG / MS - I don't want any of this! I want to be back to normal and I get the feeling my doctor thinks I'm nuts or just looking for attention or something. It's the way he looks at me. Maybe I'm reading more into it than what it is because I'm scared, paranoid perhaps, I dunno but what I do know is something is wrong.
I see the Neurologist for the first time next week.
I'm nervous because :
-The Neurologist is only 1 of 3 in my city and none of them specialize in anything, they just regular ones.
- I have a feeling my doctor likely reported that I have anxiety in his referral and the Neurologist will likely say it's depression.
- This Neurologist has bad reviews.
- I feel if this doctor doesn't help me, it will be the end of me cause I will have no where else to turn. I'm scared of the thought of this because I just can't continue living with all these symptoms with no medication to help alleviate some at least.
Just needed to vent! Thanx for listening.
Connie
It has been a month since I saw my family doctor and yesterday I was at the end of my rope so I called and got in right away.
I told him how many new symptoms have come on in the last few weeks such as short of breath, neck fullness, gaggy feeling, fullness under my breast bone, trembling legs, hoarse voice at times, hard to talk and even greater fatigue.
I asked him if my AChR had come back. He said "yes and it came back negative". I asked about doing a MUSK and LRP4 and he told me "there is no point, they are extremely rare, the AChR is most popular and with it negative, I can rule out MG".
When everything started back in January my symptoms were a little more like MS, like vertigo, balance problems, numbness in limbs etc.
Lately they seem to be more like MG.
MG / MS - I don't want any of this! I want to be back to normal and I get the feeling my doctor thinks I'm nuts or just looking for attention or something. It's the way he looks at me. Maybe I'm reading more into it than what it is because I'm scared, paranoid perhaps, I dunno but what I do know is something is wrong.
I see the Neurologist for the first time next week.
I'm nervous because :
-The Neurologist is only 1 of 3 in my city and none of them specialize in anything, they just regular ones.
- I have a feeling my doctor likely reported that I have anxiety in his referral and the Neurologist will likely say it's depression.
- This Neurologist has bad reviews.
- I feel if this doctor doesn't help me, it will be the end of me cause I will have no where else to turn. I'm scared of the thought of this because I just can't continue living with all these symptoms with no medication to help alleviate some at least.
Just needed to vent! Thanx for listening.
Connie
I've been told I'm anxious by four docs in the past few years. Interestingly a low blood calcium, which I've had undiagnosed for 6 years, causes anxiety!
So I've learned ways to cope with doctor appointments. Talking makes me breathless which makes me look more anxious. So I write out a few bullet points, large font, for the doctor to read as they tend to read faster and it doesn't wear me out.
I list things I can no longer do - ie hold up my flute, carry a basket of laundry, stir a pot of soup. This list was what finally got me referred from family doc to neurologist. Since you are actually seeing neuro next week, maybe make a list sorted by body groupings, eg eye problems, pains or numbness in places, balance issues. Then the doc has something in writing to put into your file. This helped me a lot as I lose track of things when nervous.
Good luck
Flutebell
Many in Ontario travel to the MG clinic at U of Western Ontario in London. Not sure if that is viable for you.
Wishing you well.
Larissa
I think all your fears and instincts are right. You need to go to a neuro with specialized knowledge who will understand that a negative test in MG is not the end of the road. Both my daughter and I have been negative on every single test except the SFEMG which only showed positive since we both had reallypractised doctors administering them.
I do not know what your options are there but you may well need a different primary who will help you get the help you need. Most of us here have had to go through a few to get one that was both strong enough of ego and inquisitive enough to get us further down the road.
I had one primary tell me to accept my problems and stop wasting my money on testing. I had a neurologist say if he were my neurologist he would take away my mestinon. This due to the fact I showed no positive test results. The doctors who stuck with me are the ones who used their brains and eyes to see that on mestinon I was able to go off 24 hours of oxygen.....must be something right?
Also the neuro that first put me on it and noted my very positive response kept me on it despite no positive test results because he could see the difference in my neurological exam and functioning.
Unfortunately not every doctor has the ability to help those who have undiagnosed ailments. It is clear it takes a certain type of doctor who is both inquisitive and secure in their own skin to treat even when they do not have all the answers. It also takes a certain type of astute physician to know that medicine is in it's infancy.
Not everything is known about every ailment thus people fall through the cracks.
If there is anyway you can get to a neurologist or a muscle specialist that is on the list by the MG association I would encourage you to do so. Also you may want to find a different primary who is better able to get you to someone with better credentials.
The neurologist who got me to someone well versed in SFEMG was neurologist #6 for me. That says a lot. Believe in yourself.....write all those symptoms down.....search for your best advocate.....and hopefully you will find someone who can help you find answers.
I did note that MG Canada does not have a list of physicians as yet but they do list an Ontartio Chapter. Perhpas a phone call there can link you to someone who can help you.
Many of us have been where you are and I just hope you persevere as it will pay off for you in the end....Hugs, Marie
Like others here, my diagnosis did not come easy. I started going to docs almost 10 years ago when I was having trouble with fatigue and slurred speech. I also didn't test positive for anything except ANA, which is too generic to pinpoint anything other than an autoimmune disorder.
I was so tired of hearing either, "you're just anxious or depressed" or, "there's something wrong, I just don't know what it is".....that I stopped going to any doctors. It wasn't until my husband pretty much coerced me into going to the rheumatologist a year ago (the only "ologist" I hadn't yet seen) that I finally found the inquisitive doctor GreenMarie is talking about. She worked with me for several months, even checking things outside of her field, then sent me to a neurologist (making her the 5th one I've seen), and worked closely with her to help me get a diagnosis.
Even that didn't come easily, because I'm seronegative. I had countless blood tests, scans, MRIs and ultrasounds. Even though I can't go up stairs, or get out of a chair easily, have trouble raising my arms above my head, swallowing issues, major breathing problems, hoarseness, slurred speech and other common MG symptoms, I didn't get a definitive diagnosis until I had a muscle biopsy of my right thigh, thus proving there is nothing wrong with my muscles, but it's the neuromuscular junction that's the problem.
Hopefully my story doesn't discourage you. I hope you've found here that you're not alone. We are familiar with how crazy it can make you feel to be told there's nothing wrong with you, even though you know there is.
Hang in there. Don't give up. Keep seeking until you find that one Dr. who cares enough to listen, and to dig for answers.
Our hearts are with you Connie!
Tamara
There are so many things - that this could be.
There are a lot of tests, yet to be run for you.
Hang in there, keep moving ahead - Ross
(I was 2 years, before I got a complete, correct diagnosis.)
During the first 2 years, I was once told - I was crazy!)
I will see what this Neurologist says this coming Wednesday when I see him. If he acts like my family doctor, I will have to seek out someone else to help me. I will travel to London if I have to, it's just 1 1/2 hours away from me so that is not too far.
I will post back on Wednesday after my appt.
Take Care All ! :)
Connie
I'm MuSK+ and living proof that your doctor cannot "rule out" MG because the other forms are rare. And as a physician, I can say that your family doctor's attitude is appalling. The treatment for MuSK+ MG differs from AChR+ MG; therefore, it is even more imperative to test you for the other known forms. Mestinon can actually make MuSK+ MGer's symptoms worse.
Ironically, my neurologist almost didn't order the test because he was so sure I had MG (based on symptoms) and said "no one ever comes back positive on this test." Well, there is always the exception to the rule. It has been a rough year but would have been worse if I didn't have the correct diagnosis. I wish you luck on your appointment tomorrow.
Also most researchers think that not all the antibodies for MG have been discovered so no doctor should rule it out based on tests alone.
If a person has the symptoms and responds well to mestinon it quite well might be seronegative MG.
Also if mestinon does not work well for you then you may have the MUSK types of antivbodies like unsteady talked about. My reaction to mestion was extremely positive so the neurologist I was seeing did not even consider running the MUSK test. IT was later run by another neuro and was negative as predicted,..
Then of course there are those sister diseases that look a lot like MG. A careful knowledgeable neurologist does not rule out MG so quickly,.
Hoping you find answers.....Hugs, Marie
There is just so much to consider....but just ruling out MG when you g
I wasn't expecting a full diagnosis in one day but I did expect that a Neurologist would at least have a few ideas and make plans for more testing etc.
Of course that didn't happen.
He wrapped up my appointment with " The flu-like virus you suffered back in December is the reason for this. You will feel better in 2 weeks".
AND (of course) he asked how much mg I was taking of my anxiety medication. Knowing he wanted to give me more, I acted stupid and told him I couldn't remember.
Motto for many docs: you don't have an answer blame it on depression. All that matters is that once I stepped into his office he got his payment.
It's a mystery to me that I will be better in 2 weeks, after suffering now for 10 months! How does that happen? Is he god? Can he see the future? Like it's just ridiculous.
So I broke down yesterday. I cried. ALOT. Said things in anger and scared the %^&* out of my spouse.
Now today I feel like an idiot. I'm second guessing myself. Am I depressed? Could that be giving me all these symptoms? Is it all in my head? Do I have a mental illness?
I'm so confused.
Connie
My heart so goes out to you! I've been through the very same scenario, because I am seronegative MG. I've posted this before, but I first started having symptoms almost 10 years ago, and only just got diagnosed recently, by the 5th neuro I've seen over the course of those years.
I am now on day 7 in the hospital, and this is the first time in all these years that I'm finally getting treated for MG instead of a panic attack, depression, a possible heart attack, or some other innocuous thing like acid reflux. I KNOW that I would have been taken more seriously if I was not a female! grrrrrrrrrrrrrrrr
Please don't let them pawn the crazy and/or depressed diagnosis on you. What you describe are real symptoms, the kind you don't imagine, and the kind that require competent medical attention. You know your own body, and my prayer for you is that you'll find the right professionals someway, somehow.....the ones like I finally got.....who will listen, look, and treat your serious symptoms.
I'll be praying for you. Hold on to what you know to be true about yourself and your own body. Don't accept ignorant docs and their lame efforts to diagnose your issues. I'm living proof that you CAN finally find someone who will help you figure out what's really going on.
Tamara
So sorry to hear your appointment didn't go well. Is it time to approach your GP for a referral to Dr. Nicholle in London? Maybe before the neurologist's report comes in? Is there another GP in the practice or a nurse practitioner who can give you fresh eyes on your troubles? My NP sent me to an internist - no real help but it was faster than the neurology referral.
I had four docs in two years say I needed to "see someone"! Fortunately I had read Chloe Atkins' book "My Imaginary Illness" as a hopes of figuring out how to diagnose my (still undiagnosed) calcium disorder. She fought for years against a psychiatric diagnosis and actually had MG! I re-read it again once I had a tentative diagnosis and it made even more sense!
I have a friend with severe depression (hospitalized twice) who says her psychiatrist says she gets so many autoimmune patients referred to her with things like lupus, MS, etc who shouldn't be there. It is just a catchall for docs who don't think outside the box.
When I was talking to a 85 year old calcium specialist about my problems he told me he WAS thinking outside the box. I told him he needed to use a bigger box!
Hang in there and keep fighting
Flutebell