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Questions from a Newly Diagnosed Patient

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Unread 10-27-2012, 05:24 PM   #1
zalue
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Default Questions from a Newly Diagnosed Patient

Hi,

I'm a 40 year old male newly diagnosed with MG. I have been having dysphagia, hoarseness, and issues with breathing upon exertion or talking for a few months. Many tests performed (barium swallow, stress test, etc.) and all were negative.

My neurologist (I have seen him for 6 years for idiopathic peripheral neuropathy) ran some blood work, and I was abnormal on my acetylcholine receptor antibody. My score was 0.7 on the binding test. He made a fairly firm diagnosis of MG based upon my symptoms and this serum antibody test. He ordered a chest CT scan and EMG of both arm and legs. He gave me a script for generic Mestinon which I started yesterday.

1. How long does it typically take for the Mestinon to work? My doc said I'd have to play around with the dose, but he didn't give me too much information in this area. I tried a half tablet (30 mg) both yesterday an today, to no avail. I was hoping for an immediate response. Am I taking too little (or too much)? If anything, the breathing seems a bit worse, but it's definitely not improved.

2. Over the course of the last 6 weeks, my symptoms have seemed to wax an wane. On some days I seem to be able to talk normally, on others my voice is taxed just saying a few words. Same with the swallowing and breathing, some days are good while others are bad. (This was before the Mestinon.) Is this up/down on the symptoms normal for MG?

3. If for some reason the Mestinon does not work, what then? Does that still mean I have MG? My doctor said the antibody number is more qualitative, and that higher quantitative numbers don't necessarily mean a more severe version of MG.

4. As far as this EMG that has been ordered, I overheard the nurse saying it was for both arm and legs. However, I have not have weakness in my arms and legs. Is it normal to order an EMG in these areas when trying to diagnose MG when the problem areas are in the bulbar region?

5. I like my neurologist. He's very smart. However, MG is not one of his specialty areas. I live in Cincinnati and I've heard of the MDA Clinic at the University of Cincinnati. Would I be better served going there? For those of you who have been to one of these MDA Clinics, what can I expect?

Thank you so much...!
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Unread 10-27-2012, 06:06 PM   #2
Stellatum
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Hi, and welcome. I have some partial answers to some of your questions.

Mestinon: Many people with MG respond to it, but some don't. If you're going to respond, you should notice a response in 20 to 45 minutes. Mestinon typically wears off in 3 to 6 hours. 30mg is a smallish dose. 60 is typical. But be aware that too much Mestinon can make you weak, too. When I take too much Mestinon I get little muscle twitches. If your neuro says you can take 60, it's worth trying. If 60 works but wears off too fast, then most doctors will advise you to take the doses closer together instead of taking higher doses.

Up and Down: Yes, it's very typical of MG to vary by the hour, by the day, by the week and by the month. But try journaling: write down everything you can think of that could be affecting your muscle strength, and how you felt that day. I thought I was paying attention, but when I started writing things down I discovered that the relationship between how I feel and how much I've been doing in the past few days is much stronger than I'd realized.

EMG: I think what you're describing is a single fiber EMG (SFEMG). My neurologists also told me that it doesn't matter if the muscle they test isn't weak, though I'm not quite sure I believe it. But I was diagnosed (after my first two SFEMGs were inconclusive) by a SFEMG on my face, even though I was having no symptoms there. But I'm not sure why you need a SFEMG, since my understanding is that a positive antibody test plus symptoms is already a conclusive diagnosis.

A couple more things. First, a warning. MG symptoms can come on suddenly. If you get a lot worse, or if you can't swallow or have serious trouble breathing, consider it a medical emergency. Go to the ER, call an ambulance. Second, if the Mestinon doesn't do much for you, there are many other treatments available.

Abby

Quote:
Originally Posted by zalue View Post
Hi,

I'm a 40 year old male newly diagnosed with MG. I have been having dysphagia, hoarseness, and issues with breathing upon exertion or talking for a few months. Many tests performed (barium swallow, stress test, etc.) and all were negative.

My neurologist (I have seen him for 6 years for idiopathic peripheral neuropathy) ran some blood work, and I was abnormal on my acetylcholine receptor antibody. My score was 0.7 on the binding test. He made a fairly firm diagnosis of MG based upon my symptoms and this serum antibody test. He ordered a chest CT scan and EMG of both arm and legs. He gave me a script for generic Mestinon which I started yesterday.

1. How long does it typically take for the Mestinon to work? My doc said I'd have to play around with the dose, but he didn't give me too much information in this area. I tried a half tablet (30 mg) both yesterday an today, to no avail. I was hoping for an immediate response. Am I taking too little (or too much)? If anything, the breathing seems a bit worse, but it's definitely not improved.

2. Over the course of the last 6 weeks, my symptoms have seemed to wax an wane. On some days I seem to be able to talk normally, on others my voice is taxed just saying a few words. Same with the swallowing and breathing, some days are good while others are bad. (This was before the Mestinon.) Is this up/down on the symptoms normal for MG?

3. If for some reason the Mestinon does not work, what then? Does that still mean I have MG? My doctor said the antibody number is more qualitative, and that higher quantitative numbers don't necessarily mean a more severe version of MG.

4. As far as this EMG that has been ordered, I overheard the nurse saying it was for both arm and legs. However, I have not have weakness in my arms and legs. Is it normal to order an EMG in these areas when trying to diagnose MG when the problem areas are in the bulbar region?

5. I like my neurologist. He's very smart. However, MG is not one of his specialty areas. I live in Cincinnati and I've heard of the MDA Clinic at the University of Cincinnati. Would I be better served going there? For those of you who have been to one of these MDA Clinics, what can I expect?

Thank you so much...!
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Unread 11-01-2012, 04:11 PM   #3
sheri0565
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Hi, I dont have any answers to your questions, but I too have questions! I was diagnosed on 23OCT12 and I have been surfing alot to try and find answers. My neuro
gave me a 1 week trail script for mestinon, but I havent wanted to take it yet. Can I just take it when I have symptoms? O must I stay on it?

Does driving, or riding in a vehicle make anyone's vision worse? My symptoms are generally very mild, but last weekend we were on a drive (4 hours each way) and I had the worst 2 days of vision issues so far! Can just vehicle movement make things worse?

In advance I want to thank anyone for answers. Thankfully this MG stuff doesnt seem all that common, but it sure makes it hard to get info and input!
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Unread 11-01-2012, 10:03 PM   #4
hajile99
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Quote:
Originally Posted by sheri0565 View Post
Hi, I dont have any answers to your questions, but I too have questions! I was diagnosed on 23OCT12 and I have been surfing alot to try and find answers. My neuro
gave me a 1 week trail script for mestinon, but I havent wanted to take it yet. Can I just take it when I have symptoms? O must I stay on it?

Does driving, or riding in a vehicle make anyone's vision worse? My symptoms are generally very mild, but last weekend we were on a drive (4 hours each way) and I had the worst 2 days of vision issues so far! Can just vehicle movement make things worse?

In advance I want to thank anyone for answers. Thankfully this MG stuff doesnt seem all that common, but it sure makes it hard to get info and input!
I was recently diagnosed, as well, on August 29th. I've been taking Mestinon since the day I was diagnosed and I had a near immediate, noticeable change in my energy levels and abilities. In fact, when I went to work the very next day, after taking just two doses, my coworkers remarked at how I didn't look like I was ready to pass out by noon. However, it doesn't necessarily have the same effects/benefits for all patients. I've been taking 60mg 3x a day since diagnosis (along with IVIg treatments) and my symptoms have been very well-controlled. The focus in my eyes just started to come back about three weeks ago.

I have definitely noticed more difficulty with driving. Before my eyes came back into focus, I would drive periodically with an eye patch. Even after they started to come back into focus during my other activities, I found the motion and speed of driving affected the focus, almost as if there was too much visual information passing in front of my eyes too quickly to register properly. That's gotten better over the weeks though and I've been able to (safely) drive without an eye patch.

Adam
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Unread 11-02-2012, 03:03 PM   #5
FREDH
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Quote:
Originally Posted by hajile99 View Post
I was recently diagnosed, as well, on August 29th. I've been taking Mestinon since the day I was diagnosed and I had a near immediate, noticeable change in my energy levels and abilities. In fact, when I went to work the very next day, after taking just two doses, my coworkers remarked at how I didn't look like I was ready to pass out by noon. However, it doesn't necessarily have the same effects/benefits for all patients. I've been taking 60mg 3x a day since diagnosis (along with IVIg treatments) and my symptoms have been very well-controlled. The focus in my eyes just started to come back about three weeks ago.

I have definitely noticed more difficulty with driving. Before my eyes came back into focus, I would drive periodically with an eye patch. Even after they started to come back into focus during my other activities, I found the motion and speed of driving affected the focus, almost as if there was too much visual information passing in front of my eyes too quickly to register properly. That's gotten better over the weeks though and I've been able to (safely) drive without an eye patch.

Adam
I hope I can help a little. I am about 7 or 8 mos into a diagnosis of MG. I had some of the same symptoms you all have expressed, problems chewing, speaking for very long, and droopy eyelids (fairly bad). As soon as i took the 1st Mestinon, I was symptom free. However, my Nuro says I am his poster boy for Mestinon. The way I understand this, I could go on like that from now on, or the Mestinon could begin to not work. I take 60 mg 3 x day, and so far mostly very good. Evey person with MG can vary, you will have to find your level of meds. Hope this was of some help.
There are quite a number of different meds for this, I just don't need them yet and hopefully won't.
FREDH
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Unread 11-02-2012, 03:37 PM   #6
Brennan068
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Quote:
Originally Posted by zalue View Post
Hi,

I'm a 40 year old male newly diagnosed with MG. I have been having dysphagia, hoarseness, and issues with breathing upon exertion or talking for a few months. Many tests performed (barium swallow, stress test, etc.) and all were negative.

My neurologist (I have seen him for 6 years for idiopathic peripheral neuropathy) ran some blood work, and I was abnormal on my acetylcholine receptor antibody. My score was 0.7 on the binding test. He made a fairly firm diagnosis of MG based upon my symptoms and this serum antibody test. He ordered a chest CT scan and EMG of both arm and legs. He gave me a script for generic Mestinon which I started yesterday.

1. How long does it typically take for the Mestinon to work? My doc said I'd have to play around with the dose, but he didn't give me too much information in this area. I tried a half tablet (30 mg) both yesterday an today, to no avail. I was hoping for an immediate response. Am I taking too little (or too much)? If anything, the breathing seems a bit worse, but it's definitely not improved.

2. Over the course of the last 6 weeks, my symptoms have seemed to wax an wane. On some days I seem to be able to talk normally, on others my voice is taxed just saying a few words. Same with the swallowing and breathing, some days are good while others are bad. (This was before the Mestinon.) Is this up/down on the symptoms normal for MG?

3. If for some reason the Mestinon does not work, what then? Does that still mean I have MG? My doctor said the antibody number is more qualitative, and that higher quantitative numbers don't necessarily mean a more severe version of MG.

4. As far as this EMG that has been ordered, I overheard the nurse saying it was for both arm and legs. However, I have not have weakness in my arms and legs. Is it normal to order an EMG in these areas when trying to diagnose MG when the problem areas are in the bulbar region?

5. I like my neurologist. He's very smart. However, MG is not one of his specialty areas. I live in Cincinnati and I've heard of the MDA Clinic at the University of Cincinnati. Would I be better served going there? For those of you who have been to one of these MDA Clinics, what can I expect?

Thank you so much...!
Howdy and welcome to the group

I came down with my MG symptoms around 40 too (Thymectomy on my 40th birthday weeee!)

1. You're taking too little. My neuro started me on a full tablet every 4 when I first started Mestinon treatment and has periodically tried bumping the dosage. You will want to take a full tablet every 4 to 6 hours during your trial to determine if it is working for you at all. You should feel the difference in ~30 minutes of eating the pill.

2. Yes. Depending on what you do, physical and emotional stress your symptoms will wax and wane. The really freaky thing is when the weather makes significant changes to your day to day abilities - watch the heat... it can be nasty.

3. If Mestinon does not work, your neuro will start to look at immuno-suppressants such as Prednisone, Celcept etc. I am lucky in that I never needed any steroids to suppress my immune system to control the MG. There are shorter term options (IVIG, Plasmapheresis etc.) but they tend to be reserved for clearing up serious "down time"

4. yeah, the emg will typically hit all muscle systems to locate issues; it is unusual that they'd not test your facial muscles as well if you're experiencing bulbar issues...

5. I have a generalist for my neuro too. There is no harm in seeing a specialist to get specific answers (I've gone to a specialist). The most important thing is that you trust your Neuro and medical team to get your condition under the best control possible. I'm actually in a situation where my primary care is done by discussion between me and my primary care GP. With my GP's help, I adjust my meds based on my own needs but I'm a few years into this now (and have learned my way around the system...).

Best of luck and welcome again. Don't be shy about asking questions.

Brian.
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Unread 11-14-2012, 11:09 PM   #7
JennieM
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Quote:
Originally Posted by zalue View Post
Hi,

I'm a 40 year old male newly diagnosed with MG. I have been having dysphagia, hoarseness, and issues with breathing upon exertion or talking for a few months. Many tests performed (barium swallow, stress test, etc.) and all were negative.

My neurologist (I have seen him for 6 years for idiopathic peripheral neuropathy) ran some blood work, and I was abnormal on my acetylcholine receptor antibody. My score was 0.7 on the binding test. He made a fairly firm diagnosis of MG based upon my symptoms and this serum antibody test. He ordered a chest CT scan and EMG of both arm and legs. He gave me a script for generic Mestinon which I started yesterday.

1. How long does it typically take for the Mestinon to work? My doc said I'd have to play around with the dose, but he didn't give me too much information in this area. I tried a half tablet (30 mg) both yesterday an today, to no avail. I was hoping for an immediate response. Am I taking too little (or too much)? If anything, the breathing seems a bit worse, but it's definitely not improved.

2. Over the course of the last 6 weeks, my symptoms have seemed to wax an wane. On some days I seem to be able to talk normally, on others my voice is taxed just saying a few words. Same with the swallowing and breathing, some days are good while others are bad. (This was before the Mestinon.) Is this up/down on the symptoms normal for MG?

3. If for some reason the Mestinon does not work, what then? Does that still mean I have MG? My doctor said the antibody number is more qualitative, and that higher quantitative numbers don't necessarily mean a more severe version of MG.

4. As far as this EMG that has been ordered, I overheard the nurse saying it was for both arm and legs. However, I have not have weakness in my arms and legs. Is it normal to order an EMG in these areas when trying to diagnose MG when the problem areas are in the bulbar region?

5. I like my neurologist. He's very smart. However, MG is not one of his specialty areas. I live in Cincinnati and I've heard of the MDA Clinic at the University of Cincinnati. Would I be better served going there? For those of you who have been to one of these MDA Clinics, what can I expect?

Thank you so much...!
I was diagnosed in 1981, a long, long time ago. Over the years, I have taken Mestinon off and on as needed. In answer to your question, you only take it as needed. There's no need to ramp up or down. Always remember, too much Mestinon will make you feel as bad as too little so be careful. Too much makes my mouth water, nose run, stomach cramps and jittery muscles. If I haven't had much Mestinon recently (and over the years I have had long periods with little or none) I start with 15mg (1/4 tablet) every 1/2 hour until I feel better. That way I don't OD. Some neurologists are good with MG but many don't have enough experience to deal with all the issues. As you have probably noted from this site, there are MANY, MANY symptoms and everyone is different. If you are unsure about your diagnosis, a simple test your doctor can perform is a tensilon test.

I agree with one of the other posts in answer to your questions. Watch out for heat and humidity. It can be devastating. Extreme cold can have the same effect. I live in Florida and the summers are terrible. I start warning people that from June through September, I will not feel well. I also have the hoarseness - I actually lose my voice completely. I have trouble holding things in my hands. My arms and legs get weak, especially the left side. I feel like a giant is pushing down on my chest. If I read too much or look up, down or sideways too long (like laying in bed watching TV - you're not looking at the TV straight on), my eyes feel weak and my vision gets blurry. I seem to pull muscles very easily. I am at the maximum dosage my doctor feels is safe (Mestinon 6 - 60 mg per day, Timespan 180 mg at night, Imuran 4 - 50 mg per day). I just started IVIG but ended up to Aseptic Meningitis. I used to take Predinosone but I don't tolerate it well. Otherwise, I'm perfectly healthy
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Unread 11-15-2012, 09:19 AM   #8
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It took me several days of Mestinon before I really noticed anything. At least with taking 1/2 of a pill, you have a good idea that it is not all that frightening of a drug to take. I take 60 mg 4X a day, but I think it is going to have to be increased.
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Unread 11-17-2012, 01:06 PM   #9
Lin_Z
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1. How long does it typically take for the Mestinon to work? My doc said I'd have to play around with the dose, but he didn't give me too much information in this area. I tried a half tablet (30 mg) both yesterday an today, to no avail. I was hoping for an immediate response. Am I taking too little (or too much)? If anything, the breathing seems a bit worse, but it's definitely not improved.

Hi there. I am also newly diagnosed, 25yr old female, so I know the confusion youre feeling right now. As far as Mestinon, I've been taking it for about 10 days, and noticed an effect about 45 mins after taking my first dose (60mg) A heads up: TAKE WITH FOOD! I've had terrible stomach cramps when I take it with just water or milk... Also, You have to really "feel" out your meds. What I mean is, I was prescribed 60mg 3x a day, but I noticed after about 4-5 hrs my first dose would wear off (double vision would come back, wobbly legs) however, if i took another 60mg at the allotted time, I would get so sick, so now I start with 60mg and the rest of the day take only 30mg or half a tablet. Every one is different and you really need to keep a good line of communication open with your neurologist about how youre feeling..


2. Over the course of the last 6 weeks, my symptoms have seemed to wax an wane. On some days I seem to be able to talk normally, on others my voice is taxed just saying a few words. Same with the swallowing and breathing, some days are good while others are bad. (This was before the Mestinon.) Is this up/down on the symptoms normal for MG?

Yes! My neurologist here in nyc specializes in MG and told me it is very common for symptoms to flucuate. Ive noticed some days I can walk normally, but on hot days or days when I am stressed, I wobble and stumble all over the place. This becomes tricky when you are taking the Mestinon because you dont always need the same dosage. You should keep track of your symptoms and what you were doing just before they got better/worse, and use that to consult with your neurologist about your medication.

4. As far as this EMG that has been ordered, I overheard the nurse saying it was for both arm and legs. However, I have not have weakness in my arms and legs. Is it normal to order an EMG in these areas when trying to diagnose MG when the problem areas are in the bulbar region?

I had an EMG to my arms/shoulers, when most of my weakness is in my legs, and the results were pretty definitive. Its not a pleasant experience so be prepared for a little discomfort. :-/

I hope this helps a little. Like I said, I am newly diagnosed so I dont claim to have *all* the answers, but I know how confusing and stressful this stage can be.

Good luck with your treatment!

Lindsay

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Unread 11-24-2012, 05:00 PM   #10
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I was diagnosed on September 28th of this year and was in plasmapheresis on October 1st. At first my neuro would not let me start with mestinon because he wanted to see what the pheresis and predisone were doing before masking the symptoms with mestinon.

After 2 to 3 weeks he introduced the mestinon with 60mg with each meal. This was helping me out but over night I would ride the roller coaster back to the bottom and wake up starting over again. On November 5th he prescribed the mestinon time span for over night use. He also had me up the daily dosage to 90mg at meals and gave me the go ahead to experiment if needed. I find for me it is best if I take 60mg every 3 to 4 hours depending on my activity level.

After 7 weeks of constant double vision I am now seeing well and driving with my vision clear 95% of the time. My general fatigue is lagging behind still in my arms and legs but is improved. I am hoping that will follow along soon.

I am also taking prednisone and mycophenolate. So I am like a human cocktail!

Good luck moving forward.

Roger
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