It's time to put that theory to rest, Tracy. Because one or two symptoms don't meet with your experience doesn't mean all the recognized MG symptoms & responses to treatment should be disregarded.

One of the problems is that there are no objective tests to diagnose psychiatric diseases and as I have said elsewhere this creates a very dangerous black hole in the border of neurology and psychiatry.

There is no way to check psychiatric diagnoses off the list. So, once someone considers them it is very hard to show that they do not exist. How can you show that your low mood is a normal response to a devastating illness and not "depression"? In the past it was OK to mourn a loved one, now even that is not legitimate.

As you also say, many serious disease may appear like anxiety so putting this diagnosis high on the list can be very dangerous, as it puts everyone at ease that they know what is wrong with the patient, which can easily lead to serious and even fatal errors.

Well, the soprano voice is definitely neurologically-related. I'd gone off TimeSpan Mestinon mid-January in preparation for a neuro consult and the voice issues started right after that when breathing issues increased. Then, I switched to a Mestinon generic which I took in low dose for just a few days. My voice didn't get better with the changed prescription. I've been off all Mestinon variations since 12 days prior to last week's SFEMG and just now decided to try one of my remaining TimeSpans. It helped return my soprano voice to within a normal range. My voice is still cracking and weak/wispy, but this is the best it's been in almost a month. I feel more stable with the TimeSpan compared to dosing every few hours.

I do need to see another neurologist since this neuro wants me to stop taking Mestinon altogether since the SFEMG was negative. There's a neuro who specializes in LEMS 6 hours away in Houston, so I'm going to see if he can help me get a diagnosis and easier ongoing access to treatment, maybe something more effective than Mestinon since I'm not as 'returned to normal' as I would like.

Wow, Alice, really? You aren't a pulmonologist and from what my Pulmy has said, she's seen many patients who are quite calm. Even those with COPD.

I was super calm during my crisis. Relaxed even.

I'm not trying to offend you at all but that statement comes off as arrogant. You can't make an absolute statement about all people about anything.

And as far as "creatures," my first Shih Tzu had pulmonary hypertension and wanted to play, even though she couldn't breathe.

These prejudices don't help any of us while doctoring. Sorry but that's how I honestly think about it.

Seishin, You might not even have MG or LEMS. Your CK was elevated. Did you ever get a copy of that test or have someone determine which test it was? You could have polymyositis or some other disease. Don't try to get them to prove a disease, try to get them to help you figure out what is truly going on. I hope you do get some good help.

Annie

Agreed. I've asked four doctors about the elevated CK and bili, they've blown the numbers off as irrelevant & ignored the request for additional tests to find a cause for the elevated numbers. I'm searching for a different intern/endo in hopes of finding one a bit more responsive.

After the negative SFEMG, the neuro expressed he would be happy to treat me if I could get a diagnosis elsewhere since he himself couldn't identify what was causing the symptoms. I'm reaching out to a neuro in Houston who specializes in myasthenic syndromes. He has a bulldog reputation for not letting up until he finds what's wrong. I've graduated from trying to prove this is myasthenia. If they can just figure out what this is where I can hopefully get it treated, I'll be happy. And certainly I see a lot of my symptoms overlap with those of polymyositis.

Does polymyositis respond to mestinon and tensilon?

It doesn't matter what the doctors said (no offense). Do you HAVE the test results? If not, get them pronto. That is your legal right, as a patient. Stop "asking" doctors about it and "demand" the medical records department get them for you. Any doctor who disregards a positive test result is not worth their salt. Everything needs to be taken in while looking at the WHOLE picture of someone's health.

Again, you need to know exactly which of the three CK tests it is. If it is the cardiac test, then you need to see a cardiologist. If it's the muscle test, you might need to see a rheumatologist because they are the ones who deal with polymyositis and other inflammatory diseases, not neurologists.

Some diseases can temporarily respond to Mestinon/Tensilon. I know this is a tough subject because you said your Mom had ALS but that could also be a possibility. Some ALS patients present like MG patients. Though MG is thought to be a "head and down" disease while ALS is thought to be a "feet and up" disease. HOWEVER, there was an amazing woman I knew of years ago who thought she had more bulbar MG but had a variant of ALS. She is gone now, which rips me open to think about because she was so amazing.

I hope you don't have ALS. But you can't ignore that it might run in your family. Has anyone else had it? Did your Mom have any genetic testing done?

So you need to be sure of what is going on. Any doctor who pooh-pooh's what is going on is stupid. I don't have patience anymore for doctors who are so cavalier about patients. Your doctors have not "finished" their job of helping you. Who among us (of those who can work) could keep their job if they left it half-finished?

Now, about all of this anxiety talk. KNOW what the symptoms of anxiety are. You may or may not have anxiety. You could also have panic attacks, which does not mean you also have an anxiety disorder. They do not necessarily coexist. I think seeing a psychiatrist is useful only in that you can determine if either of those things are a mitigating factor. That does not mean you can't have both a disease and a psychiatric condition. A good doctor can figure out the differences. I'm sorry, Alice, but I don't buy the BS about not being able to differentiate between them.

Psychiatry and neurology need a divorce.

I have PTSD but do not have an anxiety disorder. A specialist knows the difference. My PTSD is from medical traumas. I understand what it is and what to do about it if it rears its head. It can happen even when there isn't an obvious trigger. Being prepared for what is going on with you is half of the battle.

The bottom line is that you have to know exactly what is causing your symptoms (more than one thing, possibly) and THEN get treatment for whatever it is.

I'm sorry you are going through all of this. I know how hard it is to not have answers. Hang in there.


Annie

I second that motion.

seishin - who are you going to see in Houston? I am also in Texas, and have debated going down to methodist down there, as I hear their neuromuscular clinic is pretty amazing.. It would be great to see a Dr who really WANTED to try and figure out the problem, not just wanting to get the patient out of their office quickly..

Annie, I'm not giving up just because the doctors are cavalier about the lab test results. I AM taking it as a sign, however, that I need to find better doctors. I'm collecting medical reports with each doctor's visit to try & keep empowered. Next doctor I see, I'll switch to 'demanding' rather than 'asking' for more tests. I've tried backing off being aggressive since that garnered a negative response when this MG journey started. I've planned on seeing a cardiologist (I had an abnormal ecg from the most recent E.R. visit) and thought about seeing a rheumatologist. In fact, the endo suggested it when I asked for assistance monitoring the Polyglandular Autoimmune Syndrome. I'll push forward my search for a rheumy. (So many genres of doctor... I can't even count the number of doctors I've seen in the last three months.)

I definitely keep ALS in mind when searching for a diagnosis. And I realize defining with diagnosis won't necessarily grant treatment options. I've also read ALS can respond to mestinon & tensilon. There's been such a dramatic fluctuation in symptoms, though, so I'm less concerned about ALS than other neuromuscular and autoimmune disorders. But I haven't forgotten it and will accept it if that's what this is.

To my knowledge, my mom did not have genetic testing. There've been no other known cases of ALS in the family, but autoimmune disorders are rampant. I'm working with the assumption (unproven as of yet) that there's a mutation in HLA tissue type DR3 or B8 which led to our scattering of autoimmune disorders (including her ALS and my whatever this is). I do plan on getting genetic testing, presently on the backburner since I'm seeing what feels like a gazillion doctors these days.

I will not dismiss my symptoms as being caused by anxiety. Panic attacks,.. nah, there's no frigging way. I get the feeling this talk about anxiety is because of my voice. I am SO. OVER. this being put down as anxiety. Here's the scenario one more time so we can maybe let this go. If discussion continues on this subject, I'll try to keep open ears, but I'll say point blank I'm starting to feel hostile on the topic. Anyway, the scenario:

I wake up, my voice is normal-ish. Within a couple minutes of speaking, my voice starts to rise & become wispy. My throat aches & feels tight the longer I speak, and becomes more soprano & wispier with sustained talking. Ways in which I can make my voice return to normal: tilting my head down to my chest while talking, tilting my head up to the sky while talking, burping, sneezing, coughing, putting food in my mouth, drinking, eating, swallowing, and being on oxygen. With each of these scenarios, the return to a normal voice lasts a few seconds.

My theories as to why my throat is so heavily affected: one theory is because my job (for 10 years) involves an inordinate amount of talking all day every day. Also, I had decompression therapy on my neck for five weeks this summer. Five days a week, my neck was stretched and I wore a soft cervical collar for the duration. I continued to sleep with the loosened cervical collar for months after to provide additional support keeping the neck vertebrae from subluxating during the night. (The treatment was very successful, by the way, the 13 years of chronic neck pain is gone.)

Today I took a TimeSpan Mestinon. Periodically throughout the day, my voice returned to near normal for 10-15 minutes at a time. My voice hasn't been normal since before going off the TimeSpan at the end of January. (During the interim, I had tried the generic in 30 mg increments for a few days and it didn't help my voice at all, so I assumed my voice wasn't improved by meds. I now conclude I was wrong.) The TimeSpan wore off a couple hours ago and I can feel the difference.

"Psychiatry and neurology need a divorce." Let's put it into practice.

Anyway, thanks for your support and all the information. It's very helpful and definitely helps me feel more prepared for the doctors visits.

Bny, the doctor works out of Baylor named Dr Yadollah Harati. I've heard from 3-4 people who say he's pugnacious and highly specialized, and will keep at it until there's some sort of diagnosis. So far, I've spoken with his office staff (a woman named Claire) and I thought she was wonderful. She told me a new patient appointment only takes like two weeks to schedule (!!!) I'll probably test the water with him within the next month.

wow, that's great, I hope he really is that good and actually listens!!! Keep me updated with that.. If you have a good experience, I may just have to explore heading down there too.. Good luck!!!