MG symptoms bloodwork?
 

Hello,
I've had double vision off and on for about 6 months now. It's random. I went to eye dr with my vertical double vision. She gave a stronger eye glass prescription and asked me to keep track if it keeps happening.
My vision accuracy is great as long as I don't have symptoms. When I do it's vertical double vision, near or far. When it happens, typically in later afternoon or evening - not always every single day. At times It can happen if I read a lot. With the double vision it makes it very difficult to read and make out the letters. I remember a few months ago, I was lifting a pan off the stove and my wrist gave out and I dropped it. Other times my arms get tired when I'm trying to blow dry my short hair. More recently I noticed while chewing my jaw gets fatigued and my neck feels tight and it's more difficult to swallow, but I can manage it. My fiancé has commented that I choke a lot, just while eating, drinking or talking I'll cough like I aspirated.

I did get some bloodwork. The AChR Blocking ABS Erum was 12% which I believe was in the normal range. I said ref range: 0-25%
positive is >30
ACHR modulating ab is 12 ref range 0-20 positive would be >25

I was hoping to have some answers.

It sounds like they need to run a test for MuSK antibodies as a next step. If that, too, is negative it still doesn't mean you don't have MG, it will just take more work for a diagnosis.

I'd recommend seeking out a good neurologist who is familiar with MG.

Hi, Mopsy23. I'm sorry you aren't doing well.

Did they do a AChR binding test? That is usually done with the modulating test. The blocking test isn't done much anymore. Which lab did the test?

Antibody levels fluctuate. Those tests may need to be redone, possibly at a different lab such as Mayo Clinic.

You sound as though you have the typical fluctuating weakness of MG. As 4-eyes said, you really need an MG expert to help you. Do you know of one where you live?

If you become so bad that you can't swallow well, can't breathe well, or aren't able to move your other muscles, then you need to dial 911. Before treatment, people with MG can have a "MG crisis," where the muscles are so weak that the condition becomes life-threatening. Whether or not you have a diagnosis doesn't matter. At that point, you need immediate care.

Aspiration of foods or liquids is a real risk with MG. Some people develop aspiration pneumonia from that. If you have any signs of an infection, see a doctor right away.

You could also see a neuro-ophthalmologist and a pulmonologist. You can have breathing tests that can evaluate whether any shortness of breath is from a neuromuscular disease. And a N-O can evaluate the double vision with specialized tests that a regular ophthalmologist doesn't use.

Please be careful. Try not to overdo anything. Heat also makes MG worse, as do other things such as infections, stress, lack of sleep, certain drugs, etc. There is more information at Home

I hope you'll find out what is going on soon. Your symptoms do sound like MG. Please let us know how you're doing!

Annie

Test
 

I met with opthamologist again. She wants me to see a neurologist. She said people may not always have antibodies with MG. I showed her a photo of what my eyes look like with double vision. Since reading more about MG I wonder if that is where my neck pain comes from. I have been having neck pain and at one point it was exhausting just to hold my head up. I’ve had strained muscles in my neck that won’t go away. I’ve tried physical therapy, stretching etc. yesterday I had my hair done and I was having a hard time keeping my head up. Kept leaning it on my hand. My neck started getting sore. My eyes felt like they wanted to close. I’m scared my neurologist will poo poo me. I’d post a photo of my eyes but I don’t think I can. Sigh.

each of us are different. my mom and 2 of her sisters had the weak neck thing. mine gets tired but not where i can't hold my head up when i want too. the head is one of the heavest parts of our body.
mike

Try to think positively! A good neurologist will easily be able to see the signs of MG. I hope the experience will be good. There are now 3 different MG antibodies: AChR, MuSK, and LRP4. There might be more they haven't discovered yet. This neuro may want to redo the AChR antibodies (experts often do).

MG is considered a "head and down" disease. Symptoms often show up in the head/neck/face area first. One of my first symptoms, besides ptosis, was the back of my neck feeling like a vice grip after I talked or laughed too much. There are a lot of muscles in that area too! 640 skeletal muscles in the human body that MG can affect.

MG is all about weakness that fluctuates. A good neuro can easily fatigue the muscles of someone with MG during a good clinical exam.

Please let us know how you're doing. Good luck with the appt!

:grouphug:
Annie