[zalue]

Hi,

I've been having problems swallowing for a little over a month. With that were some issues with breathlessness while talking and a "tired voice" or hoarseness.

I was told it was GERD by an ENT and anxiety by a Gastroenterologist. My endocrinologist ran a barium swallow, which was normal. My stress test was normal. I saw a Lyme Disease doctor, who told me I had Lyme based upon a IGENEX Western Blot test. (My research has led me to believe that Lyme docs blame every malady on Lyme. She did run a CD57 test on me, which was abnormally low, 36.) My SED rate was borderline, but this was assumed to by from my Hashimoto's Thyroiditis?

I saw my Neuro (I had been seeing him for years for peripheral neuropathy.) He ran a battery of blood tests, and I was abnormal in the Acetylcholine Receptor Antibody test. My level was 0.7, while normal is between 0.0-0.4. He told me it was probably MG. I am supposed to meet him tomorrow to discuss Mestinon and a CT scan of my chest.

Can anyone help me formulate some intelligent questions for this meeting? This diagnosis took me by surprise. My doc is smart, but cranky, so I want to come up with good questions. In general, my list was going to be:

1. Are there any other tests that can further help solidify an MG diagnosis?

2. Is MG progressive?

3. Can a thymus be enlarged without it being a cancerous thymoma?

4. Is my rather low abnormal reading (0.7) on the ARA test indicative of anything?

5. My reflexes have historically been normal or a bit hyper. What does this mean in relation to MG?

If anyone can think of any specifics to add to the above, or new questions that would be good for a newly diagnosed person, I would appreciate any feedback. In particular I am uninformed about tests other than the Acetylcholine Antibody test that can rule in/out MG.

Thanks!

Bryan

[Stellatum]

Hi, and welcome. These are good questions. I have two suggestions for questions you can add:

1. What are the danger signs I should be aware of?

2. What long-term treatments can we consider? (Mestinon treats symptoms only)

Please feel very free to ask questions here. We'd love to be able to help.

Abby

Originally Posted by zalue

Hi,

I've been having problems swallowing for a little over a month. With that were some issues with breathlessness while talking and a "tired voice" or hoarseness.

I was told it was GERD by an ENT and anxiety by a Gastroenterologist. My endocrinologist ran a barium swallow, which was normal. My stress test was normal. I saw a Lyme Disease doctor, who told me I had Lyme based upon a IGENEX Western Blot test. (My research has led me to believe that Lyme docs blame every malady on Lyme. She did run a CD57 test on me, which was abnormally low, 36.) My SED rate was borderline, but this was assumed to by from my Hashimoto's Thyroiditis?

I saw my Neuro (I had been seeing him for years for peripheral neuropathy.) He ran a battery of blood tests, and I was abnormal in the Acetylcholine Receptor Antibody test. My level was 0.7, while normal is between 0.0-0.4. He told me it was probably MG. I am supposed to meet him tomorrow to discuss Mestinon and a CT scan of my chest.

Can anyone help me formulate some intelligent questions for this meeting? This diagnosis took me by surprise. My doc is smart, but cranky, so I want to come up with good questions. In general, my list was going to be:

1. Are there any other tests that can further help solidify an MG diagnosis?

2. Is MG progressive?

3. Can a thymus be enlarged without it being a cancerous thymoma?

4. Is my rather low abnormal reading (0.7) on the ARA test indicative of anything?

5. My reflexes have historically been normal or a bit hyper. What does this mean in relation to MG?

If anyone can think of any specifics to add to the above, or new questions that would be good for a newly diagnosed person, I would appreciate any feedback. In particular I am uninformed about tests other than the Acetylcholine Antibody test that can rule in/out MG.

Thanks!

Bryan

[cait24]

Welcome to the forum. So sorry you are having health issues. But you have found the right place. There are many helpful experienced people here with MG, including some physicians. Unfortunately, I cannot give you much guidance. I am still going through the diagnosis process for MG and awaiting my antibody tests results. But this forum has been tremendously helpful in informing me and giving emotional support through a very trying time.

I have GERD also and have had swallowing difficulties, voice fluctuations, extreme fatigue and a droopy eyelid. I also have a peripheral neuropathy, RSD, in my left foot. I have been doing the round of specialist too and am finally seeing a neurologist. I had a high sed rate, & C-reactive proteins. I am now waiting on MG & anca antibodies as well as the results of a brain MRI.

They did not do an EMG with me in fear of kicking off the RSD.

Let's us know what the neuro recommends so I know what to expect,
kathie