Hi Everyone,

I've been following and enjoying your posts for a while but have never posted myself. I suppose I was hoping to get a definite diagnosis myself first but it's not turning out to be easy to do that at all.

Please, I would like your advice. Your help! I'm trying to keep going but it's discouraging! To make a long story short I have been sick for almost eight years. I came across myasthenia gravis on the internet and it was finally a disease that I felt really fit my problems. I ended up getting tested at the Mayo. I tested positive for the Achr antibodies, but nothing much showed up in the EMG or nerve thingy (sorry! forget what it's really called). I asked several times for a SF EMG but it was the neuro's opinion that that wasn't the best test for mg (I know it is now). Anyway, because the AchR titers were low the neuro didn't think I had mg. Funny thing is, everything I've read since then leads me to believe that the titer level doesn't matter. I checked that with a MGF person because, really, I was beginning to think I was crazy.

Okay, here's the thing: I've been to two neurologists since then and neither of them seeemed to think I have mg. The neurologist I saw today wasn't at all impressed with my clinical exam. So I guess here's my question for all you wise people: I have a lot of the symptoms (I believe) like a drooping eye, sometimes my tongue gets very weak and I talk funny, I really, really struggle to breathe especially at night or when I'm worn out and I can't lie flat even to sleep, and my arms shake and tremble with very little exertion. But - all of this comes and goes. I've never walked into a neurologist's office having everything happen at once. I'll tremble and shake and I'm told it's anxiety or essential tremor. My eye will droop and I'll be told that it's not that bad (it seems really bad to me!) or that it's just because one eyebrow is lower than the other (which it is, but still, my eye is drooping). The breathing problems I've never had documented.

So I guess what I'm wondering is: do people with myasthenia gravis look terribly weak all the time? Is it the type of thing where you just walk into a neurologist's office and they know that you're sick? The neurologists always do the "don't let me push this limb down" test and I always pass with flying colors. It just takes time for the weakness to appear. And how badly I'll react changes from day to day and hour to hour.

I'm feeling a little hopeless about ever getting a diagnosis unless I can get a neurologist to stay with me 24/7 for a week. Or am I just clinging to the hope of a diagnosis and I'm not seeing this disease for what it is? I was trying to tell the neurologist today that I feel like I am suffocating a lot. I feel like my organs are too heavy for my lungs to push out. He really couldn't have cared less. Ugh. He finally sent me over to get a spirometry done but it was 9 in the morning and I had taken mestinon and I could feel that I could inflate my lungs at that point, so I'm sure the spirometry looked normal.

Okay, just one more question: probably my biggest problem is a horrible, deep, completely debilitating fatigue which has made it almost impossible to function much at all. Does anybody else have that?

Oops, this is turning out longer than I meant it to be. I guess I'm just trying to hold it together and feeling very discouraged. Does anybody have any thoughts or advice? Heeeelllpp!!

MG does wax and wane.....there are days when I feel 100% and then there are days when getting off the sofa isn't an option......

It took a long time to get the right dx, so don't give up! Hang in there! Easier said than done, I know, but you'll need your meds in order to live better......

It does sound like MG from your symptoms.........the extreme fatigue, droopy eye, problems breathing, etc.........

I have no idea why they would test you AFTER your Mestinon - your neuro should know better........

We do not look weak all the time. In fact, most of us look "normal" most of the time...........It does come and go!

I know I can go from great to weak in under 5 min....no idea why.........

It took a full blown crisis to finally be dx'ed for me......darn disease....

Don't let anyone convince you this is in your head. It's not. You are sick. You need help - NOW!

My thoughts and prayers are with you!
Erin

HI Erin! Thanks for your reply. I feel like I already know you, cyber speaking, since I've been reading your posts for a while.

It sounds like you've been pushed by this illness as far as anyone can and still be here. Yikes. I am wondering if I'll have to go into full blown crisis before I can get anyone to listen to me. Actually, before I'd even heard of mg I had what I think was a smaller crisis after surgury for a kidney stone. For 2 hours after I woke up I was suffocating and struggling to breath. I was freaking out! Everybody just kept saying, relax, you're anxious. I had to beg for oxygen which maybe wasn't the most helpful thing to do, knowing what I know now, but I clung to that stuff with every bit of my being. I remember thinking that the innate fear and air hunger was the worst feeling in the world. I can imagine then how awful it was for you. Terrible.


Thanks for your encouragement. You are right - I really need the drugs and treatment. Right now I'm barely crawling through each day and I'm desperate for some help. I'm a widow and have two kids to take care of. I really worry that this is not going to end well unless I can get someone to believe me so I will be able to put together some sort of life where I can work and be something resembling normal. It looks to me like I've either got to find a neuro who believes me without the symptoms all happening right there in the office, or I'm going to have to push myself toward crisis and hope someone recognizes what's going on before catastrophe hits. I hate the last option!!!

Thanks again for your encouragement and information. I'm going to keep that in mind with the next doctor I see. I just got very beaten down because I thought the positive blood results were my ticket to being listened to and taken seriously and it turns out that the positive results on paper and in books are as close to proof as you can get but in real life it's not working that way.

Anyway, thanks for the reply! You've recharged my determination batteries.

Bluesky, I'm sorry you are still not diagnosed after all this time. It can take a very long time, unfortunately.

I won't bore you with the details of my MG past. Too long and complicated. But one thing I know is that once you've been to the Mayo Clinic and they say they don't think or aren't sure you have MG, other neurologists aren't likely to go against their opinion. Have you given these other neurologists the notes from your Mayo appts?

AChR antibodies don't appear for no reason. The chance of you not having MG, along with your symptoms, would be pretty small. What antibodies showed up (i.e., binding, modulating or blocking)? Have you asked these other neurologists to explain to you why you have positive MG antibodies . . . and supposedly don't have MG?!

When was the last time you had antibodies done? Maybe it's time for them to be redone.

The degree of muscle fatigue in people with MG is highly variable - from morning to night or activity to activity. It's not the degree that's important; it's the fact that it's FATIGABLE muscle weakness that is. It's like these doctors saw those gross exaggerations of MG/ptosis in their medical books and that's all they expect to see. That's the problem with seeing "non-expert" neuros. They don't have enough experience with LOTS of MG patients and their presentations.

Have you tried taking photos of your face when you are rested and then when you are worn out? Make sure your face is in the same position both times (not bent forward, etc.). I don't know how good you are on compupter but you can then line up the before and after faces with lines from the hairline, bottom of ear lobe and bottom of chin to show that the faces are the same size. Then draw lines from, for example, the eyebrow of one side to the same eyebrow on the other. Or from mouth to mouth or nose to nose. If your face is drooping, it will be incredibly obvious - even to your neuros.

You can go to a neuro-ophthalmologist to ask them to see if them can "prove" you have fatigable weakness. Some of them still do the Tensilon test. If they do, take someone with to take photos of your face before and after.

Have you been to a pulmonologist to see if they can assess any neuromuscular weakness with your breathing? If not, do that.

What you are doing is compiling more evidence (or not) of what is going on. It may be MG, something else or MG and something else.

Bottom line is that you have the RIGHT to have a timely diagnosis and treatment plan, which you have not had. Being on Mestinon without a diagnosis is stupid (not you being stupid but the doctors). It's like they never come up with a diagnosis right away for people wth MG.

Mestinon absolutely will affect PFT's if you are doing okay at the time. I have had them off and on Mestinon and there is a fairly big difference. And I bet that you didn't have the FULL PFT's. Did they do MIP and MEP? Gas exchange? If not, get yourself a pulmonologist, away from the neuro's group, and have them assess your breathing OFF of Mestinon (if it won't risk you not breathing well).

Whatever is going on, it's not normal right? Maybe if you tell people here where you live, they can give you the name of a better neuro to help you.

I hope you can get help. I do know what it is like to go through the ringer for years when it comes to being diagnosed. And there are people who don't even post here whom I know of who are so bad off and have gone through this for decades who are still hanging in there. Just fortify your spirit and cling to what is good and you can get through this.

Annie

No prob......I know how frustrating it is to be HEARD by my docs.......in fact I was scheduled for surgery on March 27th to drain my sinuses and so on - I would not have made it, as I was hosp on March 14th for my big crisis........what a joke! Even my ENT wouldn'yt listen - said I wasn;t having problems swallowing after sticking a tube down my throat and checking it out - I was convinced I was crazy by the time I was dx'ed.....

You don't by any chance live in the San Antonio area, do you? B/c I do have a GREAT neuro who WILL listen..........

IV IG has also been wonderful.......I really love the way it makes me feel......

Do you have any other autoimmune diseases?

It must be so hard to take care of your kids while being so sick......I will really pray for you.....Do you have anyone who can help you out?

Being so sick that you have to crawl around is NOT an option.......you need help.....I wish to God that someone would take you seriously. I konw this sounds awful but if it were a MAN saying these things, they would be taken seriously.........but they all chalk it up to "nerves" or "depression" - it isn't!

I don't know what else to say but I am hoping and praying it doesn't tkae crisis to get your proper dx.........

Please feel free to contact me ANYTIME 24/7 @ erinhermes@hotmail.com

Erin

Erin, thank you for your kind thoughts. I wished I lived near Texas and could see your neurologist. I could really, really, really use one that listens. I live in Portland and it seems like no doctors listen here. It seems to be the culture. They throw some antidepressants at you (but I'm not depressed!) or toss you into a garbage diagnosis without even trying. And I think you're absolutly right about men being taken seriously and women being treated liked nuts. Like everyone I'd been fairly accomplished and balanced and used to being treated with respect until I got sick. I was in such shock the first few times when I was dismissed and treated like I was hysterical or making things up. I didn't even know how to respond. I still haven't figured it out.

Anyway, I'm sorry that you weren't listened to either. I'm sorry you got pushed right up to the edge before they would help you. It's just not right to put you through that!

Annie, you nailed it when you said that once a Mayo doc nixes the diagnosis than you're basically not going to get a doctor to override that. I've been feeling like I've been blacklisted. Between that and the diagnosis of fibromyalgia from my primary doc which I don't have any symptoms of and which is treated like a scarlett letter around here. Probably a big, giant W for waste of time.

The whole thing started off kilter because I went to the Mayo (borrowed the money to get there, so this was a huge sacrifice) and in my mind I had dreams of them really digging, digging, digging for a diagnosis. I also chose Mayo because I felt that I had so many symptoms of mg and they are supposed to be good at SFEMG. But the first day they told me to go home and come back when I was at my worst, which is not a possibility because I can't crawl on a plane and fly halfway across the country at that point, plus it's not at all predicatable how I'll feel. Anyway, I spent several days asking to be tested for mg and given a SFEMG. They finally agreed to test my blood but they gave me a regular EMG. This is where it all starts off wrong. The mayo doc was a kind, older gentleman but I couldn't convince him that the SFEMG was the best test. He also thought that because the titers were low that was indicative that I didn't really have the disease. He just wasn't very knowledgeable about MG. But because of that the snowball started.

Your point about having a doc look at me without the mayo notes is a very good point. Most doctors here require an official referral so both neuros have seen all the notes. I did speak with an MGF leader in the neighboring state to confirm that I wasn't crazy and that the titer level is meaningless and she halfheartedly recommended a doctor at the University of Washington who I have an appt with in two weeks and I don't have to send the records. I'm hoping for the best, but apparently there's nobody fabulous up her in the NW. My other opportunity is that I sent an email to a leading researcher on the east coast to confirm my understanding of the facts because I was beginning to think I was crazy and he recommended a doc in California who was a specialist. The Cal doc needs a referral though! Aaaarrrrgh!

I guess I'll just keep trying until I find someone who listens. What else can I do? I'm on the fast track to financial disaster and I'm tired, so very tired, of the suffering and the exhaustion.

Of course it's possible that I'm wrong and I don't have mg. I would just like to find someone who will keep looking for what's wrong and explain why I have these symptoms but not mg.


Thanks again to both of you for your good thoughts. I really appreciate you taking time to help me!!!!

I'm afraid I don't know anything about the WA docs.

Yes, most neuros will never oppose the Mayo Clinic - even if they are wrong.

The nicest MG expert I know doesn't do SFEMG's. The other wonderful MG expert I know does: Dr. James Howard, University of North Carolina at UNC (Chapel Hill). He is a leading expert on MG, is very good at the SFEMG and is super nice. Yes, I've seen him. It may take a couple of months to see him but it's worth it. He can also order PFT's while you are off of Mestinon but you have to ask ahead of time. What he can do that other doctors don't is get you in for an appt and testing over only a couple days. There are hotels there (Holiday Inn on Fordham road) that have shuttles to UNC and have "medical discounts." You have to weigh the costs, since you are already not doing well in that area. One thing I know for sure, he won't poo-poo you.

The last thing you want is to be bounced all over the place and not get a solid diagnosis. Then they'll not only blacklist you but start saying you are "doctor hopping," hoping the next doctor will confirm something that isn't really there!

Maybe you can ask this WA guy you'll see in two weeks to redo the AChR antibody test. Problem is that Mestinon has actually been shown to have an effect on the humoral immune system where antibodies are produced. Can you even go off of Mestinon? Caffeine does what Mestinon does (read my earlier post), so you have to be cautious about having that before tests too.

I'd love to know the name of the doc you saw at Mayo who said that low titers don't mean anything!!! It's so not true.

Be really careful about what you do next. I have been blacklisted, bad-mouthed, had medical records kept from me proving I have MG, etc. You don't want to dig the hole that I'm living in, that's for sure.

I hope you can figure this all out. It's criminal and inhumane what happens with so many MGers. I simply don't understand why neuros think women are so frail and hypochondriacal. What BS that is.

Annie

Whoa!! That's the guy I emailed on the east coast. I was so grateful that he wrote me back right away. I considered going out to see him, but I'm so gun shy at this point. That you say that he's a good listener and good doc though means a lot to me. I think I'll call tomorrow and see if I can get an appointment.



Maybe you can ask this WA guy you'll see in two weeks to redo the AChR antibody test. Problem is that Mestinon has actually been shown to have an effect on the humoral immune system where antibodies are produced. Can you even go off of Mestinon? Caffeine does what Mestinon does (read my earlier post), so you have to be cautious about having that before tests too.


I read your post about the caffeine. Very interesting. I was thinking today about going off the mestinon and only keeping it for when I really can't stand the suffocating. Or maybe that's when I should go into an ER and try to get pulmonary testing. I don't know. Anyway, you're right, I'm going to go off it in the hopes of looking my worst when I see the next doc.




The doctor at the Mayo was Dr. *******. It says very clearly in my medical records that he didn't think I had mg because of the low titers so I think I'm okay with saying his name. He was very kind and did listen, it just seemed that he wasn't completely familiar with mg.

About the blacklisting, I hear you, I really do.

If I were you, I'd take the dear doctors name off the forum and soon. You don't want to be accused of defamation, even though all you're saying is true!!!

That doctor is not an MG expert at Mayo. You should not have been sent to see him. What a waste of your time and money!

There is absolutely no need to be worried about Dr. H. NONE. I can even give you that hotel #, etc. You have to book early since it's really popular. There's a grocery store across the street and a Whole Foods three blocks away. Dr. H. is simply one of the best, in every way. His assistant is super too. I cannot say enough about UNC and him. My niece goes to school at UNC.

He does his own SFEMG's. And RNS's. He will be thorough. And he will NEVER be dismissive of you.

I know you don't know me from a hole in the wall but I've been through such mistreatment by other neuros where I live that I too had to "travel." I wouldn't stear you wrong.

I hope you get answers. Do you mind saying what your titers were?

Annie

1st of all, Bluesky (can you share your real name? It's ok if you're not comfortable with that, but I just feel like we are all treated impersonally enought by docs!), I want to say welcome to our forum, too!

My personal experience with neuro's who think it's all in your head? The only ones I've had problems like that with have been men! The female neuro's have ALL at least listened and tried to understand and find my issues. That's not to say there aren't good male neuros, but my experience is that they have been more egotistic and less willing to be a partner with me. Maybe it's the side of the brain they use, I don't know!

OK, 'nuff of that! First, you have added what could be another indicator of MG - the problem you had following surgery. After an MG dx, they call in neuro anesthesiologists because there are certain "knock out" drugs we shouldn't be given & they monitor you much more technically than non MGer's.

I have some tips to help you get better results from docs. When I started doing this, I found it's easier for me and faster for them.

List all your symptoms by when you first noticed them. Not just typical MG symptoms but anything that has seemed to change on you from before you realized something was wrong through current. Include a column for notes where you can list what seems to make it worse or better or if it comes and goes, whatever.

Also list any meds, OTCs, and vitamins you are currently or have taken in the last year. List any tests you have had done, where, and try to get copies if you don't have them to send or take with you. I also note all doctors, and surgeries by location, date, etc.

If you do this on a spreadsheet, it makes the appts. easier - I just write "see attached" on the forms they have you fill out at the docs office and give them a copy. Way easier on your brain and your muscles. And it can be easily updated, which it sounds like you're already finding happens alot!

You may want to consider keeping a diary of what's going on with you now if you don't already. This is helpful in nailing down times of day that are worse, what helps, what makes you worse etc.

Please don't get to where you hold anything back, that can cause a good doc to miss the right dx for you, which can make everything even more difficult. There are good, caring neuros that love a good challenge, although it doesn't sound like you should be such a big challenge to one that knows MG.

If I can do anything to help, please let me know. Best of luck. If I find anything on neuros in Portland that may be good, I'll let you know.