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Old 08-24-2013, 04:13 PM #1
crmak crmak is offline
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Default Getting scared--which makes it even worse!

Hi everyone. I have to apologize up front, because this is a little long.

I've taken a lot of comfort from reading the many supportive posts here. I've been essentially couch bound for the past 3 1/2 years, since the latest big stressful event knocked me off my feet..but that time I never really bounced back.
I am fortunate that I have found a neurologist who believes I have MG (ptsosis, typical extreme weakness that both recovers upon resting and is greatly increased with any stress--even good stress, decent response to Mestinon, etc.), even though I've tested negative.
My first question is, why are drs so very hesitant to give an actual diagnosis of MG? Especially since my neuro told me a good test of MG is to see if I get any relief from Mestinon, because she said the drug will not react and give relief to any other illness at all besides MG. Well, though I just started & am at 120mg per day (60mg 2x day), if I'm in a flare, which I am now, it only helps to a certain degree...a small degree. Still very noticeable that it helps, though.
So why the huge hesitance of drs to diagnose?? They already know it's a condition that typically gives false negatives. I don't get it.

Also, I'm fighting getting scared, as it creates even bigger problems. I typically get very sick (flu like, headache, worse weakness, heart pounding, etc) about 10-15 min after taking my pills each day. Usually that went away after 1-2 hrs. But now it's not going away.
I had a stressful incident about 2-3 weeks ago and, though I'd been enjoying pretty decent health (for me, anyway), it crashed me and I've not recouped since. But today was the first time I've needed help eating cereal and I basically have been so weak and nauseous...like if I push it at all I'll throw up, fall down, etc. And the worst is my throat..it's started to feel like it's weakening again, which the meds used to fix. And that scares me more than anything. It feels horrible and I'm always afraid my throat will close!

What concerns me is that these things are all worsened to the extreme lately by taking the very meds that are supposed to alleviate these symptoms. I'm afraid that my meds are making me sicker than the actual MG! Then of course I start to get scared and poof! even worse muscle & flu etc stuff.

At first I thought it was just a bad flare up caused by the stress event 3 weeks ago, but what gets me is I can have it fairly calmed down---until I take my pills, then I'm a wreck for the rest of the night.

I guess my 2nd question is, has anyone else gone through this same scenario? It's gotten so I'm scared to take my meds, and am thinking of stopping everything. Any input would be greatly appreciated.
Again, sorry for being so long winded!
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Old 08-24-2013, 05:38 PM #2
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When are you taking your meds? I take mestinon 1/2 to 1 hr before I eat, so I am strongest when I have to chew and swallow. I usually get a little flush about 20 minutes after taking mestinon, but it only lasts a couple of minutes.

Are you on any other med that could be causing the symptoms? Perhaps one of your other meds does not mix well with your mestinon. I generally take my mestinon alone and not with other medication.

I would try a call to your pharmacist to see which medicine might account for the symptoms and then give your doctor a call to see what he suggests.

MG is so stressful, I had to go on Effexor for the anxiety and I feel much better.

take care,
kathie
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Old 08-25-2013, 09:14 PM #3
gr8ful gr8ful is offline
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crmak,
I've also though about your question about problems diagnosing MG by the medical community. I have read some pretty sad posts from people who seem to be getting poor treatment while waiting a long time for a diagnosis. I was lucky to quickly test positive for AcHr antibodies (if you've got to be positive, it might as well happen fast). The AcHr negative people seem to have to jump through way too many hoops.

I don't think there's just one answer to your question but I believe doctors are trained to "do no harm" in the case where they aren't sure what to do. The Hippocratic Oath contains some words to that effect as well as other medical ethics teachings. If you search "first, do no harm" you will see a lot of content and debate.

So, in the spirit of cutting the docs a bit of slack, it may be best to do nothing when you don't know what to do. It's also probably best for the patients to start squeaking when they can't get the diagnosis or treatment they need.

I know what you mean about stress and MG and it's no fun at all. Lastly, I'd like to ask why you take mestinon only twice a day. That is not typical since it usually wears off in about 4 hours. That means you are spending much of the day without the mestinon working for you. Most people seem to be prescribed about 60mg every 4 hours. The schedule you are on wouldn't work for me and actually I sometimes go to 30mg doses every 2 hours (my neuro said that was OK for me).

I was really scared last winter when I was diagnosed. As I figure out how this whacky disease works, I'm less scared but I sure don't like having it. Stopping meds doesn't sound like a good idea without talking to your docs. If you need to go to the ER because you feel you can't breath, just do it. There's no need to be scared if you are willing to make the ER visit.

I hope you feel better soon...
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Old 08-26-2013, 07:09 PM #4
joefnh joefnh is offline
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CRmak, I'm not sure why doctors are slow to make a Dx, but I'm sure part of the reason is they want to give you the correct diagnosis and treatment. There are diseases like MS that can mimic some of the symptoms of MG and may even slightly respond to Mestinon. If a doctor fails to diagnose MS, thats one of those conditions that once functionality is lost over time it usually doesn't come back, they want to make sure they are targeting the right thing.

Also doctors are under the malpractice lawsuit gun all of the time, unfortunately that is a reality they have to deal with for better or worse.

With certain conditions like MG it's a hard diagnosis to make and I believe it's under diagnosed. It's one of those conditions that is not always diagnosed with a blood test or muscle function test and even the blood tests are a hit and miss thing with false positives and negatives.

From what it sounds like you have a lot of anxiety about this and your doctor may or may not be treating this the best. I am a firm believer of a second or third opinion. Remember it's your life and health that's at risk, for the doctor your just another patient. I would recommend getting another opinion, I know it's a pain, but it's your health and well being that you are protecting.

Recently I took the step of addressing depression and anxiety that for the most part was brought on by the whole MG issue. I am amazed how much a simple medication (Wellbutrin) has helped my anxiety level and my overall outlook in how I deal with all of these issues. I am new to MG as well, I was diagnosed in April. A I read your post I can feel the anxiety, certainly if you haven't already and feel you want to ask your primary care doc about a trial of an antidepressant that also helps anxiety. I fought it for years actually but am glad I finally made decision, it helps a lot.

Take care ... Best of wishes

Joe
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Old 08-27-2013, 02:07 PM #5
crmak crmak is offline
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Default Thank you all

I want to thank all of you for taking the time to reply and share your thoughts. You've made me feel better.
Since I posted this thread, I've seen my neurologist and basically asked her everything I had posted to you all. She increased my Mestinon to up to 4 a day, and already I see a big difference. And I'm scheduled to get my single fiber test in October. She did state that it's just hard to be really sure and wants to get as accurate a diagnosis as possible, as there are other drugs that treat MG that she would send me to a fellow neurologist to for treatment.
But, while I am not looking forward to how uncomfortable that single fiber test is supposed to be, I am looking forward to at least getting a definite answer.

She said my chronic fatigue syndrome and my sjogrens could be causing some of the symptoms too, and that's why they hesitate till after the test to be more definite in their dx. What a pain in the behind!

But I have to say, you all do help me a lot just by making me feel that I'm not alone. That really means the world to me. Thank you!
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