Hi Everyone!

Let me apologize in advance. This is going to be a long post. No laughing , but I just figured out that there was more than one page to this post, so I’ve been missing out on a lot! So, wondergirl & AnnieB3, I finally see your links! LOL.

---Stellatum
I will send you a PM (I think that means Personal Message) regarding my symptoms and we can exchange stories. Fortunately, you are still allowed to take the mestinon. I was told not to take mestinon for 2 days prior to my SFEMG, but I have stopped taking it now. My SFEMG is not until Sept 29th. I will only take it if I start to have severe breathing problems. I want to make sure that it is all out of my system before the SFEMG.

I worry that your getting muscles twitches while on the mestinon. This does not happen to me. Have you discussed this with your neuro?

In my case, I think the mestinon helps significantly and I do worry about going off it for breathing reasons, but I’m willing to chance it. I don’t want to have any reason that the SFEMG might give a false-negative.

I’ve been doing a lot of research on neuromuscular problems. Send me a list of your symptoms and how they started, etc… And I will see if they ring any bells. No promises, but it couldn’t hurt.

Prayers for diagnoses for both of us! Best wishes, Lindie.

--AnnieB3
I want to know mestinon’s effect on healthy people because I want to understand the neuro’s rationale for taking me off the mestinon if my SFEMG is negative. In my opinion, the mestinon SIGNIFICANTLY increases my strength. He has NEVER seen its effects on me. If my SFEMG is negative, I think he is going to try and say that there is nothing wrong with me (i.e. I’m a “healthy” individual). I was hoping to find data that mestinon would not increase strength in a healthy individual or would have a deleterious effect.

Unfortunately, thus far, that does not seem to be the case. It appears that a deleterious effect can occur only if too much mestinon is ingested. However, 30mg 3 times a day, does not appear to be too much and can apparently improve the strength in a healthy individual. This does not help my case. Right now I am only being allowed 30mg 3 times a day. Thus, he could argue, if my SFEMG is negative, that the improved strength I get from mestinon is not significant or is caused by the placebo effect.

Who is Dr. Howard?

--Wondergirl and AnnieB3
Okay, now I want to get in on the “trashcan” diagnosis subject. MG is definitely not a trash can diagnosis. The problem is that people like wondergirl and me who are struggling to find out what is wrong with us do often get trashcan diagnoses, such as fibromyalagia, anxiety, depression, conversion disorder, chronic fatigue syndrome, etc… Not because these diagnoses are "trash" in any way, but because they are given without thorough investigation into your ailment. These diagnoses are often given when a doctor doesn't know what is wrong with you and has thrown his hands up.

Unfortunately, once you are pigeon-holed with one of these diagnoses, especially, if it is psychiatric based diagnosis, no doctor takes you seriously or will truly investigate your symptoms.

I think this is where a lot of wondergirl’s frustration comes from and so does mine. I KNOW that there is something wrong with me and I know it is NOT one of these trashcan diagnoses. I want a doctor to stop feeding me trashcan diagnoses and do the job that I am paying him for—finding out what is truly wrong with me. I can handle whatever it might be, but I need to know. I can’t fight something if I don’t know what it is. Without a definitive diagnosis there is no real treatment and without real treatment I continue to suffer.

I agree with AnnieB3 that MG should not be a difficult disease to diagnose, but it is. In part this is because every MG patient is different and unfortunately, doctors have a recipe for MG and if you don’t fit every category in the recipe they will withhold diagnosis. Also, a lot of doctors, especially neuros (I’ve found anyway), think they are Gods and know everything. Very few of them do the job we’ve hired them to do—investigate our illness. They go off of their own knowledge and if everything about your disorder is not in their knowledge base, well, they wash their hands of you. Additionally, very few actually listen to their patients and are detailed or thorough in their analyses. To make matters worse, unfortunately, we live in an age where diagnostics are all the rage. Without a diagnostic test that confirms the ailment, doctors will deny diagnosis. In my opinion this is a problem because doctors are more and more relying on tests, which can be fallible, to tell them what their brains should be telling them. Don't get me wrong. I do think diagnostic tests are very important, but they are not the be all and end all of medicine. There comes a point when a doctor needs to stop looking for diagnostic confirmation and start looking at a patient clinically. Doctors need to think and brainstorm about what is going on with their patients instead of waiting for some test to give them the answer. If it walks like a duck, quacks like a duck, and looks like a duck, then you shouldn't need a special test to tell you that it is a duck. Granted a test could confirm to you that it is in fact a duck, but what if the test comes back negative? Would you actually look at the duck and say, well, the test to confirm that your a duck as come back negative, so I don't think I can definitively say that your a duck. Come on docs, start using your brains!

As far as I’m concerned, the DOCTORS, make getting a diagnosis more difficult than it should. As a patient, this is beyond frustrating.

AnnieB3’s suggestions about keeping a log of ALL your symptoms, taking photos of your face, and doing research are all great suggestions. I do all of them. Unfortunately, my experience so far is that the doctors don’t want to see your symptom list or your photos. Nor do they care about YOUR research. YOU are a nobody, THEY are the doctors. Perhaps, I’ve just had bad luck with doctors, but I’d really like to know when my luck will change because it’s been 13 years!!!

AnnieB3’s suggestion to see other doctors such as a plumonogist and a neuro-opthalmologist is also a good suggestion, one that I am in the process of doing. However, thus far, I have found that what the other doctors have written about you in their reports will follow you, even if you see doctors in different fields. It’s medical bureaucracy.

I am NOT okay with not knowing what is wrong with me. But I don’t focus on the “what if's”. I focus on what is true for me. I don’t think anyone should try to “prove” that they have a particular ailment, what if you are pigeon holing yourself? What if you are wrong? Right now I would like a GOOD doctor, who listens to me, looks at my symptoms list, looks at my pictures, isn’t an arrogant know it all, who is thorough investigator, etc… because that is the only kind of doctor that is going to be able to figure out what is going on with me. The problem is that I don’t think this kind of doctor truly exists. I’ve only been looking for him/her since 1997.

BTW, ending up in a myasthenic crisis seems to be what has worked to get some people an MG diagnosis. I must have the worst of all luck because it didn’t work for me. I’ve been hospitalized twice for breathing problems that match an MG crisis and would have been hospitalized at least 2 more times if I hadn’t taken 60mg of Mestinon (without my doctor’s permission) when the breathing problems hit again. Despite the fact that my records clearly state that twice all of my stats (heart rate, O2, etc…) dropped drastically low during my first breathing crisis (they said that this happened when I “fell asleep”, but I do wonder if my diaphragm simply gave out) and that mestinon significantly relieved my symptoms (both breathing & weakness in other parts of my body)----I am still being denied an MG diagnosis.

Can you tell that I’ve simply had it with the medical system?

Sorry to be so negative everyone. Apparently I had a lot to get off my chest.

Sincerely,
Lindie

Kinda tired so brain is fuzzy now, but overall I agree. I don't know which trashcan diagnoses you got. In my case two of mine are Fibromyalgia and CFS, and I believe I do have those. But for some reason I feel like my Fibro was secondary to the MG or MG-like thing that I have. Just my hypothesis. I am willing to accept that I do not have MG. But that instead I have some viral thing that causes muscle weakness and resembles MG in ways. And I think that made me very prone to developing Fibro. I don't want to give personal details here but there's a research study that makes me think this viral/MG-like stuff.

I said most of this in previous posts on this forum but I guess it's ok to repeat. I wish I could remember or find the webpage again. I believe there was this article by a MG specialist where he encouraged docs to diagnose you with MG if you responded to a trial of Mestinon. Despite all other tests being negative.

I feel my case is more mild. I mean I don't think a doc would see drooping and stuff.

Also for me the Mestinon helps with so much more than what you'd think of as "muscle strength". Helps me formulate sentences without having this weird halting/pausing that my brain does on me, helps my speaking not feel tiring, and gets rid of this terrible inaction feeling I have. I think my brain needs that extra Ach. I read that Mestinon is not supposed to cross the brain barrier much except in times of high stress, I am usually in high stress mode and think it crosses mine and helps a lot. I feel I get a dual effect therefore, the brain one and the muscle one. And I think the muscles not feeling all weak also makes my brain act differently and not go "wait a minute, don't try to move now because you're so weak... maybe later".

I'm sure there are some good MG specialists out there. Who would diagnose based on all that evidence. Did you try any that specialized in MG? I don't have nearly so much evidence.

I did get diagnosed with autonomic dysfunction which may help you a little bit. But that's a semi-trashcan diagnosis. Mine is, anyway, because my doc who diagnosed it did not figure out what type of dysfunction so it's like a "not otherwise specified" / unknown version. I personally think mine is a trashcan diagnosis anyway because I think it's only due to my Fibro/CFS/MG-like stuff going on that my autonomic system acts a bit funny sometimes.

Anyway before I forget, um, if you have $$$ and time and can travel, there's a doc you might consider seeing about MG or other diagnosis (PM me if so). Anyway back on the other topic, for autoimmune types of autonomic dysfunction, Mestinon often helps. So I consider it some kind of autoimmune thing I have. Someday I would like to get a NCV and EMG and EEG again, I believe my other results were wrong.

On this other topic of twitches, I wonder if MG people are more prone to them? I got twitches as a med side effect, major ones, and think it's easy for me to get mild ones from seemingly-innocent supplements or meds.

[QUOTE=wondergirl;691687]I'm sure there are some good MG specialists out there. Who would diagnose based on all that evidence. Did you try any that specialized in MG? I don't have nearly so much evidence.

I did get diagnosed with autonomic dysfunction which may help you a little bit.

Wondergirl, I don't know all your details but in researching my own issues while waiting for a diagnosis I see over and over that autonomic dysfunction is a hallmark of Lambert Eaton myasthenic syndrome, especially dry mouth, impaired sweating, and postural hypotension. LEMS is another autoimmune disease of the neuromuscular junction, even less well-known than MG. It affects release of acetylcholine rather than uptake. The results are much the same as with MG.

I easily get symptoms of Mestinon overdose and can only imagine that these symptoms are what normal people would get from taking Mestinon. All of the symptoms I get are listed as side effects for Mestinon except for one symptom (increased heart rate).

When I take too much Mestinon (or don't eat/drink with the Mestinon), this is what I feel (even if I take only 15 mg):
-Nervous
-Twitching
-Increased heart rate
-Diarrhea

If I continue to take the same doseage of Mestinon I get worse symptoms such as:
-Sore muscles
-Stiff muscles (one time it was so bad I could not bend my arms or legs)
-Sweating
-Mouth watering
-Double vision
-Heart pounding even when resting
-Nervous to the point that I feel afraid of people
-Stuttering

I can not imagine wanting to take Mestinon if I did not have MG. I hate the side effects and don't think it can make a normal person stronger - I think they would instead get sore and stiff muscles (and other side effects) which would make them weaker. Of course, that is my opinion, but I strongly feel that you will know if you are taking too much Mestinon. I don't think any of the side effects of Mestinon are pleasant or helpful.

I know how much Mestinon helps me and I feel angry at your doctor for not listening to you, especially when he has no other diagnosis or solution. To withhold Mestinon from me would feel like a death sentence, because without it I am basically bedridden and unable to chew food or function at all. Maybe your MG isn't as bad as mine, but still I relate to your situation and feel angry.

I hope my list of side effect is helpful.

Thanks DesertFlower,

I haven't have any of those side effects while taking my 30mg of Mestinon. I've only taken 60mg of Mestinon once to divert a breathing crisis, but I didn't have any side effects from it either. Yes, the possibility of a doctor taking away my mestinon does in fact feel like a death sentence. That's a great way to put it. It will condemn me to a life in bed or on the couch. Even worse, it may actually kill me as I've been having breathing problems and some severe choking issues. It seems that no one wants to take the responsibility of giving me a diagnosis based on clinical symptoms, but who takes the responsibility if I die because they refused to treat me clinically?

Thanks for your support!

Thank you for mentioning LEMS, that might fit me better than MG. I know I looked at that condition before, but ruled it out as unlikely for some reason. Maybe because it usually does not start in childhood, but I need to keep LEMS in mind. That's a great example of why a diagnosis would help some patients: LEMS has at least one medication that is used for it, which is NOT used for MG. I'm not sure if I'm understanding right, it seems to say if you have LEMS you have cancerous cells floating around your body? Even if you don't have a tumor. Cancer does run in my family but obviously I hope I don't have anything of that nature in me.

Same here, I hate the side effects. It makes me really hesitate to take the Mestinon. I wish I would just take it more but to me it's sort of trading one problem for another. I do feel life would be much worse without the option to take it sometimes.

I hate that sometimes the Mestinon is a lot less effective for me. Those are often the times I am wanting it to work the most. This might be an indicator that I don't have MG? I believe some other people with MG agreed about this part? It doesn't work as well when I'm somehow in an extra tired out state. Though in this state maybe I should take a higher dose, but I've been afraid of side effects.

Wondergirl, if I am tired from too much activity, Mestinon is not as effective. I have to be careful not to overexert myself. Mestinon does not make me "normal" and for me it is also usually when I most want to do something that the Mestinon is not enough to prevent the MG symptoms and I have to rest. If I don't rest when I need to the MG symptoms get much worse. Mestinon really just takes away the worst of the MG symptoms. It is very frustrating...I am sort of learning to live with it, to know when to rest, to do my best to pick the activities that I want to do and say no to everything else.

Same for me. (As I mentioned, I do have CFS/ME which new research says is due to a virus called XMRV. And Fibro.) I used to think it was due to Fibro, but now think that's minor and I think I can tell the difference. I don't know if it's true but I wonder if the Mestinon not helping is when my body runs out of Ach supplies to send to the muscles? I would like to try supplements that help Ach production and provide building blocks.

If I sit or lay in some odd positions, they are actually easier on my body. Because certain muscles of mine are not as weak apparently. But normal day to day activity is hard on my muscles. Just sitting in a chair or laying down in some positions.

I think when I'm not on Mestinon, my body is releasing adrenaline just to so it can do anything, and it helps for the immediate needs but that probably makes me weaker in the long run. I guess we discussed this part already. Mestinon makes me not have to do the adrenaline pushing and crashing which feels icky and unhealthy.

60% of LEMS cases are "paraneoplastic", meaning there is a cancer,usually small cell cancer of the lung. If someone at high risk for lung cancer is diagnosed with LEMS then the doctors need to do tests for lung cancer. The other 40% of cases are non-paraneoplastic, autoimmune disease.