[teelae]

Can you guys tell me how long it was from diagnosis to when you started having respiratory or even swallowing symptoms? Also, is everyone on some kind of medication for the MG?
Are there any MG patients who are NOT on steroids, imuran, cellcept or mestinon etc.? The more I read and have been reading since October, I am just not sure which neuro to believe - one says I have it, the other says I don't. So many of my symptoms are like yours. They just are not everyday. However the need for more sleep, rest and increased fatigue IS there everyday. I am trying to piece this all together for myself, so I know what direction to "kind of" go in. So danged confused. Teelae

[suev]

Hi Teelae...of course every one is different and there is no 'pattern' to MG or its progression. That said I can tell you that I looked for a diagnosis for about 2 years - - and have been diagnosed for almost 2 years now. I was clinically diagnosed since I am sero neg and a border line fail on the SF EMG.

So over the 4 years, here's how it went with me.

First arms - heaviness after (during) activity. Noticed it most in upper arms when trying to reach for something, or shampooing hair. Brushing my horse became an exhausting affair!

Then about a year latter, hips felt wobbly / achy sometimes when I was climbing stairs. I had to stop riding my horse. Just couldn't get muscles to work right for any length of time.

Once diagnosed, started mestinon ( I have never taken anything other than mestinon so far - - and have never had any hospitalizations or crisis).

In the past two years, I have quadrupled the amount of mestinon I take on a daily basis (under neuros supervision...I started on a very low dose!).

Probably year 3 (about one year ago), I began to notice the bulbar symptoms. I always used to whistle or hum or sing a tune when doing chores around the house or driving somewhere. Always had the radio on. No more. Just can't get my voice, throat, jaw to work like I need it to after one song. Besides, it's to frustrating when my voice is breaking or when I can't control the pitch (this even has begun to happen now at times when I'm just trying to talk!)

But on the positive side - I still mow the lawn and work in the landscaping (it just takes longer!). I play golf 4 -5 times a week - but fewer holes and always with a cart. My husband and I try to walk 1 mile every day (sometimes I have to have a rest along the way - but sometimes not). Now I must say - I only do the golf and the walking if someone is with me...just in case.

I don't get sleepy tired, but whenever I don't get a restful night's sleep the next day is a 'weak' day.

Mostly, I have adapted as things have gone along. And quite frankly, just writing this note has been a bit of an eye opener for me. I try not to acknowledge the changes to myself.

So that is my 'case' in a nutshell - - but remember every one is different. And it is confusing. And it can be quite frustrating. And it is not fair. Hope this helps you in some small way.

[Stellatum]

Originally Posted by teelae

Can you guys tell me how long it was from diagnosis to when you started having respiratory or even swallowing symptoms?

I've had symptoms for a year and a half now, and I don't have any respiratory problems, even when I'm at my weakest. When I'm very weak, I have some swallowing problems--just the muscle at the top of the back of my mouth, and sometimes my coffee goes down the wrong pipe or I get a feeling like the food has gone up my nose. For me, this is very mild, but a bit alarming, and I found out that "trouble swallowing" is a symptom that gets taken very seriously, even when it's mild. "Doctor, I can't walk" "Hmm...can you come in next week?" "Doctor, I'm having trouble swallowing." "Go to the ER."

Originally Posted by teelae

Also, is everyone on some kind of medication for the MG? Are there any MG patients who are NOT on steroids, imuran, cellcept or mestinon etc.?

Almost all of us are on Mestinon because it's a relatively safe drug, though some people here (not me!) have stomach side-effects from it. Most of us are taking immunosuppressants, though some of us can't tolerate those, and my unofficial observation is that all the people here who are on steroids are trying to get off them. For that reason, I am trying to avoid them, though I know that sometimes MG can be so dangerous that they're simply necessary. A lot of us also have IVIG or plasmapheresis either regularly or occasionally.

BUT: please note that some people with MG go into remission, either spontaneously or because of the drugs. You won't meet too many people in remission here, simply because when you're in remission, MG stops being such a big part of your life and you tend not to spend a lot of time in a forum like this. So don't get the wrong impression by what you read here! We are not the success stories--at least not yet. But there are success stories.

When I was trying to get diagnosed, and hearing contradictory things from different doctors, I was in a terrible mental state. It is real suffering, and don't let anyone suggest otherwise. When I did get a firm diagnosis, I was ecstatic: not because MG is a picnic, but because now I could just deal with the disease itself, and not that other thing--the emotional burden of not knowing. It is very real, and very heavy. I hope you get answers soon.

I wanted to say, to your other question of whether anyone has ever had a positive antibodies test followed by a negative one: that must be rare, simply because if the symptoms suggest MG, then the blood test clinches the diagnosis. So I don't think most people in your situation get tested again. I really don't get your doctor's insistence that your day-to-day variations rule out MG. And I bet that you have symptoms that an experienced neuro could pick up even when you don't notice them yourself (my neuro claims I have double vision, though I never notice it, and another neuro see ptosis I can't see).

Abby

[Suddenly]

Hi Teelae,
I'll second what the others have said.
My search for a diagnosis started when a problem I had with an occasional "slow swallow" became more problematic. I lived with it and ignored it for a year before spending 6 months with a GI doc trying to find a cause. My GP referred me to a neurologist when all the GIs testing came back negative. She found proximal weakness and that was the game changer. She referred me to the MG specialist. Still my test results were all negative (and there were a lot of tests) so after three months with the neuro mg specialist he finally diagnosed me based on symptoms, a picture I took of myself with a droopy eyelid, and a positive response to mestinon. My chest CT showed thymic hyperplasia and I had a thymectomy in August 2010 after a round of plasmapheresis. Now I take 60mg mestinon every 4 hours and IVIG once a month. My symptoms still have a tendency to be uncontrolled. I have weakness of my arms, legs and neck but my main symptoms are swallowing problems, double vision, slurred speech and jaw fatigue. I've never had severe respiratory problems but sometimes feel more aware of my breathing and like I can't get a good deep breath. The big thing about MG is the way the symptoms come and go. Just today I've had three different periods of time when my symptoms were bad. In between I felt pretty normal. So, my problems began with the swallow.
Keep looking and don't give up! It's just so important to know what you're up against.

[teelae]

Originally Posted by Suddenly

Hi Teelae,
I'll second what the others have said.
My search for a diagnosis started when a problem I had with an occasional "slow swallow" became more problematic. I lived with it and ignored it for a year before spending 6 months with a GI doc trying to find a cause. My GP referred me to a neurologist when all the GIs testing came back negative. She found proximal weakness and that was the game changer. She referred me to the MG specialist. Still my test results were all negative (and there were a lot of tests) so after three months with the neuro mg specialist he finally diagnosed me based on symptoms, a picture I took of myself with a droopy eyelid, and a positive response to mestinon. My chest CT showed thymic hyperplasia and I had a thymectomy in August 2010 after a round of plasmapheresis. Now I take 60mg mestinon every 4 hours and IVIG once a month. My symptoms still have a tendency to be uncontrolled. I have weakness of my arms, legs and neck but my main symptoms are swallowing problems, double vision, slurred speech and jaw fatigue. I've never had severe respiratory problems but sometimes feel more aware of my breathing and like I can't get a good deep breath. The big thing about MG is the way the symptoms come and go. Just today I've had three different periods of time when my symptoms were bad. In between I felt pretty normal. So, my problems began with the swallow.
Keep looking and don't give up! It's just so important to know what you're up against.

Thank you all of you for your very timely input. My neuro that is my second opinion is the head of the university MG clinic. HE is the one saying that if I had MG the symptoms would be varying within one day - not days apart. HE is the one saying that you cannot be positive then go negative. I am leary of all this because it so not what I have heard before and am hearing now. I have the muscle test on the 21st of the eyes and my shoulders I think. I also have a question about swallowing. When I lay on my right or left side, when I am not very upright, I have noticed that I have a feeling of my esophagus kind of like "laying on itself" in spots, if that makes any sense. It feels like the position kind of closes off the throat in areas, has any one of you guys ever experienced any feeling like that? It doesn't have to do with swallowing, just position, if I drink anything or eat anything in that position, then it will make swallowing harder. I do not know what I would do without this site. Thanks everyone.

[teelae]

Originally Posted by Suddenly

Hi Teelae,
I'll second what the others have said.
My search for a diagnosis started when a problem I had with an occasional "slow swallow" became more problematic. I lived with it and ignored it for a year before spending 6 months with a GI doc trying to find a cause. My GP referred me to a neurologist when all the GIs testing came back negative. She found proximal weakness and that was the game changer. She referred me to the MG specialist. Still my test results were all negative (and there were a lot of tests) so after three months with the neuro mg specialist he finally diagnosed me based on symptoms, a picture I took of myself with a droopy eyelid, and a positive response to mestinon. My chest CT showed thymic hyperplasia and I had a thymectomy in August 2010 after a round of plasmapheresis. Now I take 60mg mestinon every 4 hours and IVIG once a month. My symptoms still have a tendency to be uncontrolled. I have weakness of my arms, legs and neck but my main symptoms are swallowing problems, double vision, slurred speech and jaw fatigue. I've never had severe respiratory problems but sometimes feel more aware of my breathing and like I can't get a good deep breath. The big thing about MG is the way the symptoms come and go. Just today I've had three different periods of time when my symptoms were bad. In between I felt pretty normal. So, my problems began with the swallow.
Keep looking and don't give up! It's just so important to know what you're up against.

I also have a PFO -mine is small, however I have a heart murmur from it I guess, I also have PVC's and PAC's - how does the PFO impede healing?, also it was not mentioned when my thymectomy was scheduled (I did not have it because the diagnosis is still up in the air) - why did they not give you a thymectomy because of your PFO? Is yours very large? Are you a medical person by chance?

[alice md]

Hi,

my personal experience is fairly rare and unusual, but is still part of the MG spectrum. And one of the reasons, that I am trying to do what I can to help others have a shorter route (if possible).

I had some mild degree of intermittent exercise intolerance since early childhood. (but, nothing that warranted any medical consultation).

when I was 28 I started having intermittent weakness and mostly ptosis of my left eye. I was diagnosed with MG (clinically) within a week. I received mestinon, which helped tremendously for about 3 months, and then started helping less. All my tests (EMG and antibodies) came back negative, so they decided I had ocular MG. A few months later, I started having episodes of much more severe weakness (to the extent that I could hardly get out of bed), and some breathing difficulties (only when I exerted myself). Those episodes could last any where from a few hours to a few days, and were extremely confusing. During one of those more severe episodes I was seen by a neurology resident in the ER, who admitted me with the diagnosis of severe exacerbation of generalized MG, but as my tests were again negative, and there was significant improvement within a few days of bed-rest, I was sent home with the diagnosis of "medical student's disease".

I kept on having intermittent symptoms for about another year, and kept on taking mestinon as it helped at least to some extent. I postponed starting my residency training until I am better, and I gradually did get better, until those episodes became so rare and only after very significant exertion, that it did not bother me any more. I also gradually stopped taking mestinon.

For the next 15 years I was practically healthy. Until 6 years ago, when I started having intermittent episodes of shortness of breath on exertion, which were initially thought to be asthma, but within a few months my pulmonologist thought it was respiratory muscle weakness. This time I had not only RNS but also a new test- SFEMG and also more extensive serological tests (not only AchR but also MuSK), as the neurologists that saw me were sure it was MG. Again all my tests came back negative, and as my symptoms were not entirely typical either, I was told to wait and see what happens. I think they were hoping that it will all dissapear. Again mestinon helped tremendously but only for a few months. so, a few months later I found myself in the ICU with the diagnosis of myasthenic crisis, unfortunately not made by an MG expert, but by the head of the ICU.

I had a dramatic response to plasmapheresis, which lasted for a very short period. I was diagnosed with MG on clinical grounds, because there was no other possible explanation for my symptoms, but as I did not have a significant response to any other treatment (except plasmapheresis, which was not practical in my case), this diagnosis was questioned again and again.

It took about 3 more years before I was eventually referred to a large MG center. By that time I already required intermittent respiratory support and help in most daily activities. There I was diagnosed with MG based on direct measurement of respiratory muscle force, and later also anti-MuSK antibodies that were detected using an experimental method. I was started on high dose steroids which led to a significant deterioration in my condition. I was nearly bed-ridden for the next ten months until I gradually recovered from this worsening, which was not transient as expected. For nearly a year I required injections of neostigmine.

At some point, I was started on albuterol, which led to significant improvement, and lately ephedrine was added as well. I no longer take mestinon or any other medication except for those.

My symptoms change during the same day, from day to day, or even from week to week. I can go from being able to walk a short distance on my own, and not requiring respiratory support, to being nearly bed-ridden and hardly able to breath on my own. my more severe episodes can last from a few hours (0r even less) to a few days.

I hope this helps you in some way.

[Suddenly]

Originally Posted by alice md

Hi,

my personal experience is fairly rare and unusual, but is still part of the MG spectrum. And one of the reasons, that I am trying to do what I can to help others have a shorter route (if possible).

I had some mild degree of intermittent exercise intolerance since early childhood. (but, nothing that warranted any medical consultation).

when I was 28 I started having intermittent weakness and mostly ptosis of my left eye. I was diagnosed with MG (clinically) within a week. I received mestinon, which helped tremendously for about 3 months, and then started helping less. All my tests (EMG and antibodies) came back negative, so they decided I had ocular MG. A few months later, I started having episodes of much more severe weakness (to the extent that I could hardly get out of bed), and some breathing difficulties (only when I exerted myself). Those episodes could last any where from a few hours to a few days, and were extremely confusing. During one of those more severe episodes I was seen by a neurology resident in the ER, who admitted me with the diagnosis of severe exacerbation of generalized MG, but as my tests were again negative, and there was significant improvement within a few days of bed-rest, I was sent home with the diagnosis of "medical student's disease".

I kept on having intermittent symptoms for about another year, and kept on taking mestinon as it helped at least to some extent. I postponed starting my residency training until I am better, and I gradually did get better, until those episodes became so rare and only after very significant exertion, that it did not bother me any more. I also gradually stopped taking mestinon.

For the next 15 years I was practically healthy. Until 6 years ago, when I started having intermittent episodes of shortness of breath on exertion, which were initially thought to be asthma, but within a few months my pulmonologist thought it was respiratory muscle weakness. This time I had not only RNS but also a new test- SFEMG and also more extensive serological tests (not only AchR but also MuSK), as the neurologists that saw me were sure it was MG. Again all my tests came back negative, and as my symptoms were not entirely typical either, I was told to wait and see what happens. I think they were hoping that it will all dissapear. Again mestinon helped tremendously but only for a few months. so, a few months later I found myself in the ICU with the diagnosis of myasthenic crisis, unfortunately not made by an MG expert, but by the head of the ICU.

I had a dramatic response to plasmapheresis, which lasted for a very short period. I was diagnosed with MG on clinical grounds, because there was no other possible explanation for my symptoms, but as I did not have a significant response to any other treatment (except plasmapheresis, which was not practical in my case), this diagnosis was questioned again and again.

It took about 3 more years before I was eventually referred to a large MG center. By that time I already required intermittent respiratory support and help in most daily activities. There I was diagnosed with MG based on direct measurement of respiratory muscle force, and later also anti-MuSK antibodies that were detected using an experimental method. I was started on high dose steroids which led to a significant deterioration in my condition. I was nearly bed-ridden for the next ten months until I gradually recovered from this worsening, which was not transient as expected. For nearly a year I required injections of neostigmine.

At some point, I was started on albuterol, which led to significant improvement, and lately ephedrine was added as well. I no longer take mestinon or any other medication except for those.

My symptoms change during the same day, from day to day, or even from week to week. I can go from being able to walk a short distance on my own, and not requiring respiratory support, to being nearly bed-ridden and hardly able to breath on my own. my more severe episodes can last from a few hours (0r even less) to a few days.

I hope this helps you in some way.

I will fully agree with alicemd, the symptoms can vary during the same day, from day to day, week to week, month to month. That was the most frustrating part of mg for me in the first year, I couldn't identify a pattern for the symptoms. I like a little control in my life (laughing hysterically) and the inability to predict how I would be functioning from hour to hour was driving me crazy. I have finally made a sort of peace with that.

Teelae, I have experienced the feeling of my esophagus touching itself (it really is hard to describe and that description doesn't sound so good). My problems swallowing are my most consistent symptom. It's always there to some degree but definitely varies with the same inconsistency as the other symptoms.

[teelae]

Originally Posted by Suddenly

I will fully agree with alicemd, the symptoms can vary during the same day, from day to day, week to week, month to month. That was the most frustrating part of mg for me in the first year, I couldn't identify a pattern for the symptoms. I like a little control in my life (laughing hysterically) and the inability to predict how I would be functioning from hour to hour was driving me crazy. I have finally made a sort of peace with that.

Teelae, I have experienced the feeling of my esophagus touching itself (it really is hard to describe and that description doesn't sound so good). My problems swallowing are my most consistent symptom. It's always there to some degree but definitely varies with the same inconsistency as the other symptoms.

Thankyou AliceMD for your story, it helped alot. How does the PFO fit in? Also, to Suddenly, new member, thank you for your response - the esophagus touching itself really is an apt description, I described it as folding on itself in places. Is yours ever related to the positioning??

[Suddenly]

Originally Posted by teelae

Thankyou AliceMD for your story, it helped alot. How does the PFO fit in? Also, to Suddenly, new member, thank you for your response - the esophagus touching itself really is an apt description, I described it as folding on itself in places. Is yours ever related to the positioning??

It doesn't happen to me often but when it does it's usually when lying down on my side. I suspect it is normal for the esophagus to be in contact with itself (not an open tube in our chest) but there is something different happening that just doesn't feel right.
What is PFO?