I'm so glad you liked Dr. Howard, Annie. Thanks for the encouragement.

UNCG classes start on the 17th, so I only have next week to get ready for the semester. I was hoping I would have answers by now. I hate to miss classes so I can go to the doctor, but I might not have a choice. I guess I'll have to tell my professors if it comes to that.

I did what you suggested, and took pictures of my face. My right eyebrow is more than half an inch below the level of my left eyebrow, and my right upper lid (from the crease to the eyebrow) looks puffy and completely covers the lower lid, but the eyelid itself doesn't drop over my iris. The upper lid on the left eye does not look puffy, and the lower lid is visible almost back to the crease. There is no difference at the beginning or end of the day--the droop is the same.

They don't look the same at all, and they sure don't look like they both belong on the same face. Good thing my glasses hide it fairly well. Sure looks weird.

Rose

Well, I was wrong. I've been tracking the changes to my eyelids, and by the end of the day, both eyes have the same amount of droop. So the left side starts out normal, but by the evening, it's just as bad as the right side. I've taken pictures, so I can show Dr. Howard. Still waiting on the referral to him.

The B12 was 572 (range is 211-911) and the RBC Folate was 580 (range is >280). So they seem to be normal.

I got the physical therapy notes from 2006 from my neurologist. The results are VERY interesting.

After one month of physical therapy, the functional testing revealed:

• Walking 3 minutes causes stumbling due to fatigue.
• Standing 15 minutes with feeling of legs giving out.
• Fatigue of the lower extremities with 3 minutes upon treadmill test, and fatigue with 3 minutes and 50 seconds on the bike.

After another month of physical therapy, the functional testing revealed:

• Walking 5 minutes causes stumbling due to fatigue.
• Standing 12 to 15 minutes with feeling of legs giving out.
• Fatigue of lower extremities with 4 minutes upon treadmill test, and fatigue with 3 minutes and 10 seconds on bike.

The prognosis says that "the patient has met maximum functional independence at this time. The patient shows strength to be good and to be within functional limits upon one repetition of maximum strength; however, upon repetition, the patient continues to fatigue."

Now, you would think that the neurologist would have run some tests to try to figure out why my muscles were so fatigued, but he didn't. When I saw him last week, he continues to say that he thinks the problems are all hormonal, although he agreed that all of the muscle testing the doctor did at Duke was abnormal (SFEMG, regular EMG, Nerve conduction).

I can only shake my head. The evidence is right in front of him, but because I don't have classic ptosis, he refuses to consider that I have MG.

So now I have this evidence, plus the pictures of my eyes, plus the cardiopulmonary stress test that I flunked, plus the Duke endo saying the muscle weakness and fatigue is NOT hormonal and NOT because I take physiological doses of replacement cortisol.

I sure hope Dr. Howard can figure this out.

Rose

I finally got a call back from Dr. Howard's scheduler, and she says he's making appointments for 18 to 24 months from now. Yikes! I will go on the list, but I hope I can find someone else that can see me sooner.

While I wait to see him, I went to the Winston-Salem MG support group meeting and asked them if they could give me the names of any doctors in the WS area that might be able to diagnose me. I also called the Greensboro MDA office, and they gave me the names of two doctors at Wake Forest Baptist Health in Winston Salem, which were also names that the support group people had given me.

I tried to make an appointment with the doctors at WFBH, and they said I needed to fax my records and the clinic manager would review them and determine who I needed to see. She called me back today and said that she had reviewed the information I sent her with one of their doctors and that they didn't think they could help me and "they didn't want to waste my time." What does that mean!! Doctor speak for we don't want to waste our time?

On further questioning, she said they could only do the EMG etc. tests again, and if they got the same results that Duke got, then I would be unhappy with them as well. I said I wouldn't be unhappy if they got the same results because it would mean they were valid, but maybe I would be able to find out why I have "non-disfiguring myopathy" (the diagnosis the Duke doctor gave me). She wouldn't budge. Just said I needed to go back to Duke or try UNC-Chapel Hill (2 year wait-see above) or Vanderbilt (my insurance is only good in NC, can't go there).

I am trying to make an appointment with the other doctor that the support group recommended. I have a call in to Dr. Edward Hill with Salem Neurology--waiting to hear back from his scheduler. I've been waiting nearly a week already, no call back.

At this point, I am starting to feel hopeless. What do I do next? Should I go to a neuro-opthalmologist? A pulmonologist? Maybe they can refer me to a neurologist that will take me seriously?

I am so tired of being patted on the head and told to go away. Do I have to be dead before someone will try to figure this out?

If you have double vision I highly recommend a neuro-ophthalmologist. A neuro-ophthalmologist gave me my first DX.
Mike

And I would also recommend a pulmonologist (in addition to what Mike said). Use as many specialists as you can to narrow this down. When you see a pulmonologist, make sure you ask for MIP and MEP to be done. If you can get into UNC to have that done, that would be best. They "get" MG and what to look for.

I'm really sorry you are getting the runaround. So many of us have.

Your B12 is not that great. It certainly couldn't hurt to take some daily (methylcobalamin).

Fatigable muscles are never normal.

Non-disfiguring myopathy?! Seriously?

http://www.clevelandclinicmeded.com/...hy/Default.htm

There are many MDA Directors around the country. Dr. Allan Weiss at the St. Petersburg Neurology Clinic is one of them. They often have "free" exam days, or MDA Clinic days. It's at least worth a call to a director in your area.

https://www.mda.org/clinic/universit...lina-hospitals

Why don't you see if Dr. Chahin or Dr. Karam can see you at UNC?

The reason that it takes so long to see Dr. Howard is that SFEMGs take 1 - 2 hours to perform and an additional 2 hours to evaluate.

Just keep trying to seek out help. And take it as easy as you can!

Annie

Hi, Mike,

I don't have double vision (like 2 of each letter), but when I get tired, my eyes won't focus properly, so everything is blurry. And after I read for a while, one eye tracks on one line, and the other eye tracks on the line below it.

So I guess it is double vision, sort of, and not all the time.

Kind of hard to read that way...

Rose

Annie, thank you for your suggestions and responses to my posts. You are so amazingly helpful to everyone on this board. Thank you for the links and the feedback, and most especially, for the encouragement you give everyone. I hope you are feeling better--I read one of your posts that said you had had a rough time of it lately.

I talked to my primary doctor today for about an hour. I am going to call and find out what the wait time is to see either Dr. Chahin or Dr. Karam. If they can see me sooner, I will let her know and she will do a referral to one of them. I am also going to try to find out the name of a pulmonologist at UNC, and she is willing to refer me there as well. So we'll approach it from two directions.

We also discussed the fact that my temperature doesn't go up when I exercise. My physiology professor at UNCG (a PhD) said that indicates there is a problem with the mitochondria, which would also cause a lack of energy in the muscles. My primary has a patient with a mitochondrial disorder that is so rare, there are only six people in the entire WORLD who have been diagnosed with it. I don't remember the name of the enzyme that is defective in this patient, but she was diagnosed at Cleveland Clinic as a kid.

I think I should contact the United Mitochondrial Disease Foundation and see if they know of any doctors in NC who see adult patients. My primary will refer me if I can find out a name. Maybe there is someone who specializes in muscle disorders specifically, since we've pretty well determined that the problem is with the muscles, not the nerves. We just don't know if it's MG, or a glycogen storage disorder, or a mitochondrial disorder, or something else. I don't know what that kind of doctor would be called. Do you?

I am going to ask my insurance company if they cover treatment outside of NC, in case I need to go to someplace like Mayo or Cleveland clinic. I think I would have to pay the bill out of my own pocket if I went elsewhere (which means I couldn't go), but it doesn't hurt to ask. I will also ask if they cover muscle biopsies, but I have heard they can cost $10K or more, and I don't really want one unless there is no other way to determine the problem.

I will still try to get in to see Dr. Hill at Salem Neurology, in case he can diagnose me sooner. I can always cancel the other appointments if Dr. Hill can figure it out.

So that's the plan. I'll post more when I know more. Any ideas welcome, and thanks in advance.

Rose

You're welcome. Always glad to help.

You don't want to see too many neurologists. They'll then accuse you of "doctor hopping."

Try to see someone at UNC first. They can do a muscle biopsy there, if necessary.

Temps do NOT go up when healthy people exercise. I don't know who gave you that incorrect info. It's when temperatures are not able to be regulated that it is then an issue, often autonomic, sometimes endocrine. Do you sweat normally?

Don't push an agenda. I mean, don't tell any doctor what you think you have. They hate that! They'll be thinking, "How dare she think she knows more than I do!"

You do, in fact, probably have double vision. If your eyes are not focusing correctly, that will often mean muscle weakness. And if that fluctuates, well, that's indicative of MG. That's why a neuro-ophthalmologist would be so helpful. They have special tests they can do (visual tests) that show what's going on. They'll also try to fatigue your eyelids and then test afterwards.

Don't get the cart before the mito horse! The same doctors who diagnose MG are the ones who look for any mito disorders. Yes, there are specialists at Cleveland Clinic and Mayo, BUT they are the same exact neuromuscular specialists who work with MG patients. Your best bet is to deal with someone local (UNC) first.

My muscle biopsy was completely paid for by insurance.

Find out if Salem neurology can do SFEMGs or muscle biopsies. Usually it's only larger clinics such as UNC. Why go to Salem and then have to go to UNC after all? You might still need to bounced all over afterwards.

I'm not saying any of this to upset you, but I've gone the circle jerk route with neuros. It's not helpful and usually ends up hurting your care in the long run.

You might not have MG, but you might. What bugs me about the Duke nonsense is that they gave you a label—which wasn't at all scientific—because they couldn't be bothered with figuring out exactly what's going on AND finding a treatment for it.

Whatever you do, don't bad mouth any other neuros. Curse of healthcare death after that!

I hope someone out there will have an "aha" moment for you!

Annie

I made an appointment with Dr. Hill at Salem Neurology while I waited for the referral to Dr. Howard at UNC to get through the process. He does SFEMG testing, so I figured if Dr. Hill couldn't figure it out, then I could always go to Dr. Howard in a year or two, whenever I could get in to see him. I'm glad I did that, because I got a call on Friday afternoon that Dr. Howard has reviewed the records my PCP sent him, and he doesn't feel like he can help me. So, no appointment at UNC. I am sad, but not surprised.

Fortunately, I saw Dr. Hill on Thursday afternoon. He listened, he took me seriously, he asked good questions, and he is willing to do tests to try to figure out what is going on. He said Dr. Massey at Duke is "phenomenal" and he trusts her test results, but he agreed that the label of "non-disfiguring myopathy" doesn't really tell me what I'm dealing with. I told him I am at the point that I need to get an electric scooter, but I don't have a diagnosis that will make the insurance pay for it. He gets it.

He said the diagnosis of myopathy narrows the focus considerably, and eliminates a lot of other things, like nerve issues such as MS or ALS. He doesn't think I have MG, but he said it's a diagnosis of elimination. He thinks I might have either late onset muscular dystrophy or non-syndromic congenital muscular dystrophy. He also said I have a very complicated case, since I have so many other things that are wrong, but he didn't say he couldn't help me. Halleleujah!!

I am scheduled for a nerve conduction study on both legs next Friday, and he wants to order a bunch of blood tests for both versions of MD, as well as Peroxisomal Disorders. If those are negative, then he wants to do a muscle biopsy to check for mitochondrial disorders or glycogen storage disorders. If those are negative, then he may circle back to MG as a possibility. Whew! That's a lot to take in.

He said he wants me to read about the various forms that MD can take, and see which versions match my symptoms the best, because I know my symptoms way better than he does. That will narrow down the list of blood tests that he might order, and make it more likely that we are testing for things that might have positive results. I like the idea, because from the little bit of reading I have been able to do on MD, there are lots of ways it can manifest.

If I have MD, the most likely version is limb-girdle MD, since my thigh muscles are so weak I can barely lift my legs to put on my pants or my tennis shoes when I get dressed. There are a couple of other versions that might be worth checking as well. Some of them also affect respiratory muscles, and there is even one that affects eye muscles. So it's a reasonable possibility that should be excluded, since there are actually diagnostic DNA tests for it.

I didn't mean to write a book here, but I thought it was worth going into a bit of detail about the variety of versions, since some of you are still trying to get diagnosed, and I don't know if you have been tested for MD. Here's a good link for more info: http://www.cinrgresearch.org/aboutnd/diseases.cfm

At any rate, I'll keep you posted on what develops. If any of you have been down the "maybe it's MD" road, I would like to hear about your experiences and the tests they did. Also, if any of you can think of specific questions I should ask him, please post them.

Thanks in advance!

Rose