[karenbbb]

Hi all, I'm new here and seeking help with neurological symptoms without a diagnosis. In the last year, I've two separate "episodes" that have sent me to the doctor. Episode one happened after a cold, and it consisted of some minor numbness and tingling in my left pinky and ring finger, an overwhelming feeling of fatigue, and then nystagmus in the morning for about a month and a half (it lasted about ten minutes). Episode 2 happened about three or four months later and started with a headache in my right eye that lasted for about a week. Visual fields test was normal, so no optic neuritis. However, I started to wake up and get double vision, which I also sometimes had at night. I filmed my eyes and saw that my left eye lags when I look at something close and then at something far away, and it also turns in as well as out. Outside of those episodes, though, I have periods of ridiculous fatigue where my eyelids droop, my speech slurs, and my voice gets hoarse. I also have weakness in my neck to the point where I have to lie down to rest it. My fatigue almost always happens towards the end of the day.

I've seen several neurologists, none of which seem all that concerned with anything going on, mostly because my symptoms aren't present "all the time." However, I did get an MRI of the brain, orbits, and spinal cord, which revealed nothing abnormal. I did also see an ophthalmologist who was convinced I had Multiple Sclerosis, but also offered Myasthenia Gravis as a possibility because of the double vision and strabismus. So, at my own request, after the normal MRI, I got a test for the MG antibodies. For some reason they didn't do the MuSK test, but the antibodies test came back (apparently -- I haven't seen the actual write-up yet) as .32.

So, here are my questions. Should I pursue other tests, like the tensilon test, to see if MG is a possibility? Is the .32 a "high normal"? Should I ask to be tested again later on? Should I keep trying to find the elusive neurologist who knows what she's doing and really wants to pursue a diagnosis, or should I move on and accept that there's nothing wrong with me? I'm honestly not sure what to do at this point. I don't want to waste anyone's time, but I have a hard time there's nothing going on.

[Panorama]

Originally Posted by karenbbb

Hi all, I'm new here and seeking help with neurological symptoms without a diagnosis.

Karen,

Welcome. You found a great place to learn about MG. Here is a link to the free MG manual that has lots of information. The following quote is from the section on antibody tests:

Assay for AChR-abs is an essential diagnostic test for MG. The most commonly performed assay measures binding to purified AChR from human skeletal muscle that is labeled with radioiodinated α-bungarotoxin.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 15

This section also explain what they can do in the absence of a positive blood test.

The publication was designed for professionals, but it has a lot to offer us. I just skipped the 95 percent that I did not under stand.

-Mark-

[Panorama]

Originally Posted by karenbbb

I started to wake up and get double vision, which I also sometimes had at night. I filmed my eyes and saw that my left eye lags when I look at something close and then at something far away, and it also turns in as well as out. Outside of those episodes, though, I have periods of ridiculous fatigue where my eyelids droop, my speech slurs, and my voice gets hoarse. I also have weakness in my neck to the point where I have to lie down to rest it. My fatigue almost always happens towards the end of the day.

Karen,

Again, you have found a great place for support. We have all been where your are now. You're not alone.

You are describing classic MG symptoms. They were my first symptoms, as they were for many others here. MG is often called the "snowflake" disorder, because it is different for each of us. While we all share some symptoms in common, none of us share all the same symptoms.

The important thing to know is that MG can be managed, and you can enjoy a long and rewarding rewarding life.

It sounds like your are waiting for the results of your MG antibody blood test, or the interpretation of the results. I do not know how to intemperate the numbers you posted. It is my understanding, though, that any amount of antibody is a positive test. Some of the other forum members will know more about the numbers than I.

If you get a positive MG antibody blood test, you can start pushing your doctors for treatment. Or, if that does not work, your new doctors. You may find our experience with doctors helpful going forward.

If you have a negative blood test, you may still have MG. There are other diagnostic tools the doctors will use to make a MG diagnosis.

The usual course of treatment starts with Mestinon, a drug that treats the symptoms of MG. Sometimes this is enough to tamp back the symptoms. If Mestinon alone does not reduce symptoms to a acceptable level, other therapies are employed.

So sorry you have to deal with this thing,

-Mark-

[karenbbb]

Wow, thanks for the support! Your comments and links are very helpful. I just picked up the test results, and they are in the normal range. My reading are as follows:

Acetylcholine receptor, binding antibody 85985980: <0.30
Acetylcholine receptor, binding antibody 85987480: <15
Acetylcholine receptor modulating antibody 85987490: 23% (reference range is <32%)

I'm still not entirely sure what most of that means, except that they were all in normal range. I was also not tested for the MuSK antibodies, which is... dumb.

I think part of the problem is that no one seems all that knowledgable of the disease. The last neurologist I saw did a five minute neurological exam, making me push and pull and squeeze, and then said it was unlikely I had MG but that I could take the blood test if I wanted to. She seemed to think that was the only test, and that if I had the disease I would test positive for it via the blood test, which doesn't seem to be true. She seemed to not consider the slurred speech and fatigue, nor did she consider the ocular muscle weakness either. I don't have ptosis, too, which isn't helping.

I'm still not sure I have MG, but it's a possibility from what I've been reading, and it would explain a lot of my symptoms. Does anyone know of an MG specialist in the state of Florida, preferably north or central Florida? I'd like to see someone who has a bit more experience with this.

[Panorama]

Originally Posted by karenbbb

I'm still not sure I have MG

From your description of symptoms, I have little doubt. The key is to find the right neurologist. Ask him or her, "with these symptoms, what else could it be? Should we wait for a full blown Myasthenic Crisis before we move forward?"

-Mark-

[karenbbb]

Okay, thanks, Panorama. I'll try to find a specialist to see.

[AnnieB3]

Hi, Karen. Welcome!

You might have more than one thing going on, though most of what you describe sounds like MG (double vision, neck weakness, etc.). Sensory symptoms are not indicative of MG, such as tingling.

I think you're misreading the results. 0.32 is above normal for the AChR binding antibodies. The modulating antibodies are shown as a percentage, and do not have a decimal point. So, from what I can see, you have a positive MG antibody test.

Antibodies and, therefore, antibody tests, fluctuate and do not necessarily reflect the severity of an autoimmune disease.

There's some debate about what is positive with the modulating antibodies. Each lab has their own range for that. If you see an MG expert, you might want to have your antibodies redone and sent to Mayo.

MG is diagnosed clinically and the diagnosis is backed up with any test results. Did you get the records of your visit? If not, do so. They should have documented what your strength was in whatever muscle groups they checked.

Other tests you could have done are a Tensilon Test, a RNS, EMG, or a Single Fiber EMG. If you're short of breath, you could see a pulmonologist for breathing tests, including MIP and MEP (specific to neuromuscular diseases). You could also see a neuro-ophthalmologist to assess your double vision. They have special tests they do to see if your eyelid muscles are fatigable, as they are in MG.

Dr. Allan Weiss is in St. Petersburg, Florida and is an excellent neurologist, MG expert, and MDA Director. He is with the St. Anthony's Neurology Group. 727-820-7701 I can't recommend him highly enough. You could always go there once, for a consultation/diagnostic visit and then ask a neurologist closer to you to continue care. He might be able to recommend someone.

Have you considered going to the Mayo Clinic in Florida?

Since you live in Florida, you need to be careful not to get hot. Heat makes MG worse, and it can get worse rapidly. If you have MG, you have to be aware that it can progress to the point of not being able to speak, move, or breathe. That's called an MG crisis. If you have any of those symptoms, you need to dial 911. It doesn't matter if you have a diagnosis or not. Don't be scared, just get help.

It couldn't hurt to have someone check your B12 and thyroid levels, too. Those are fairly common issues. Vitamin D deficiency, too.

I hope you'll get some help. What else can we do for you? Any more questions? Please let us know!

Annie

[Panorama]

Originally Posted by karenbbb

Okay, thanks, Panorama. I'll try to find a specialist to see.

That's Mr. Panorama--just kidding--it's Mark.

-Mark-

[Panorama]

I posted the following about pushing my doctors to begin treatment, after a sever MG crises, one that I fought home alone, two months before my Myasthenia Gravis diagnosis. I did go to Urgent Care at my medical group, but the doctor sent me home with antibiotics---to 5 days of hell. I though I had a sinus infection.

The state of my diagnosis in mid-November 2013 was a positive blood test. My primary care doctor refereed me to a neurologist in the group. The earliest appointment I could get was the first week in February 2014.

=======================================

Think about this for a moment. My doctor knew I had MG in the second week of November because of my positive AChR-ab blood test. He also knew that I had a major MG crises, yet my treatment was not likely to start until the first week of February. What was my doctor thinking?

========================================

By November 22nd (just before Thanksgiving) I was having increasingly more severe symptoms. I was panicking. I work in the On-Demand Transportation Industry (I drive a taxicab). The holiday season is our most lucrative time of the year. I was looking at the real possibility that I would not be able to work.

My doctor wanted me to do a CT scan. How could I afford this if I could not work? I was a self-paying patient at the time and the CT scan would have cost me $500 (I now have health insurance through the Affordable Care Act).

I sent the following fax on November 22nd to my primary care doctor:

After sending you the earlier fax, I did a bit of research on Myasthenia Gravis. I have come to believe your diagnosis is spot-on. The list of symptoms are very much what I have been experiencing.

[BTW doctors never tire of hearing the phrase: "your diagnosis is spot-on."]

http://www.medicalnewstoday.com/articles/179968.php

These include:

1. The double vision I was experience earlier, particularly when fatigued.
2. Trouble chewing.
3. Symptoms less severe after periods of rest and sleep.
4. Trouble swallowing.
5. Face mussels weak.
6. Jaw mussel weak.
7. Speech soft and nasal. In my case speech is very difficult.
8. Fatigue.

Some of these symptoms go back a long time, particularly the trouble chewing. I have also been fatigued for quite some time, but I assumed this was due to my work. Driving a taxicab 50 to 60 hours a week is very taxing. I assumed the fatigue was due to this work schedule. The only time I have taken off in the last 5 or 6 years was the 10 days in September when I was extremely sick.

The above coupled with the results from the blood test appear to point directly at MG.

What is the purpose of waiting three months to see a neurologist? Will I need to see him for treatment, or is there something you can do?

I’d like to begin treatment as soon as possible. Is it possible to begin treatment today? With the upcoming holidays and and the neurologist busy schedule, it might be some time before he can see me.

If this current episode is like the other two episodes when the symptoms passed in 7 to 10 days, waiting might not be a problem. If this current episode follows a similar trajectory, I may be symptoms free in a few days, followed by a symptom free period of two to three weeks.

But if it takes longer for this episode to pass, it will start to have a very negative impact on my life. I’m not getting enough sleep, as I am awakened every hour to clear the mucus out of my throat. I’m also unable to eat any solid food now, but I am getting proper nutrition with a product called The Ultimate Meal.

I then went to bed and awoke with a voice message that they had ordered a prescriptions for something called "Mestinon." The neurologist also found time to see me on the Monday following Thanksgiving. Prednisone soon followed.

-Mark-

[karenbbb]

I don't remember the actual B12 numbers, but I'm sure I can call to get them. And yes, thankfully I do have a cell phone with me at all times. Luckily, I've never been in a situation where I've had to call 911, and I hope I never will.

Thank you again, you guys, for this information. It's more than doctors have given me, and, sadly, more attention than most doctors have given me. My symptoms have been blamed on stress and anxiety, a cold, and even dry eye, if you can believe it. That, or they say nothing about a cause, and they don't appear interested in finding one. The last neuro I saw (who just moved out of town, actually) said she didn't know, and she left it at that. It was almost as if a negative MRI meant nothing could be wrong, and that it was the only diagnostic tool available for anything. Negative MRI = no pathology. Overall, most of the doctors I've seen have just been lazy; lazy and disinterested. I've often felt like I'm a nuisance to them, whose symptoms are not severe enough to warrant their attention.

I'm seriously grateful for you taking the time to respond to me and to provide me with really helpful information that I would've have received otherwise. Thank you, thank you, thank you.