Hi everyone,

I just got a copy of the letter from the mg specialist. He pretty much called the results just slightly abnormal which really (again) surprised me. Can somebody give me some guidance on this? Here are the results of my sfemg:

frontalis - mean MCD 38.3 mcroSec, increased jitter in 33% of pairs

obicularis oculi - increased jitter 11% of pairs.

I'm only listing the abnormal findings. From what I've been able to look up, anything above 10% of pairs having increased jitter is abnormal. So, I can see why the obicularis muscle was described as "borderline abnormal" on the report, but I'm confused about the frontalis muscle.

I guess I'm not clear on what would be a completely, clearly abnormal result? Could I please get some help from those of you who have had abnormal findings? What percent of pairs is clearly abnormal?

Has anyone had the frontalis come back abnormal? From what I've read this muscle doesn't have standardized cutoff points for the mean MCD so I suppose it might not do me much good to compare those results.

I'm just very disappointed. I showed the neuro two different videos of my calves having fasciculations and them severely cramping up. I also have a weird quivering on my thigh when I move it. They are two totally different looking things. He seems to have labelled the thigh quivering fasciculations and therefore discounted (or forgot?) the fasciculations and cramping in my calves. I am just terribly, terribly disappointed because he didn't address this at all and I thought that he would know of all people. I really thought he might talk about neuromyotonia or cramp fasciculation (which he mentioned at the time) but in the letter he just says that they didn't find any "fasciculation" evidence on the emg in my thigh. He didn't mention the calves or the cramping at all and (maybe I'm paranoid here) but seemed to imply that it was all in my head even though I have two, very shocking, videos.

Well, I'm broke and I give up. My only hope is my local neuro here. I wish I hadn't spent my last bit of money going to see this guy. I feel like no matter what I do - bring pictures, videos, graphs and recordings of my oxymeter, lists of symptoms - nobody really HEARS me.

This is so frustrating.

Ally

Ally, First, I think it might be good to take a deep breath and take a step back. You know I know how hard that is after all you've gone through but it might help. Bottom line is that you had a POSITIVE SFEMG! So that does indicate MG.

The following all depends upon your age, because that's how the MCD is set up in Erik Stalberg's book and is accepted as "the way it is" since he invented the SFEMG. Yes, there are standard "cutoff" ranges for most muscles that are standardly tested. And they test those muscles ONLY because they don't have MCD's for all of them. On the list in Stalberg's book, there is listed the Tibialis anterior, however. Otherwise they are mainly upper body muscles.

Frontalis Muscle: These are what the "average" mean consecutive difference (MCD) is for age groups (normal readings):

Age 30 MCD of 34.4
Age 40 MCD of 35.5
Age 50 MCD of 37.3
Age 60 MCD of 40.0

33% of pairs done - not knowing how many pairs were done - is a clear positive result. Your MCD must've been at least in the range of 51 - 150 (they don't count anything over 150 MCD), for the frontalis.

I'm no expert here, okay, and evaluating this stuff is complicated. The reason they say "borderline" is that in medicine there is always a +/- in tests. 11% is slightly increased and may be considered borderline because there may not have been a huge increase in MCD.

What your results are not showing - and what doctors don't show - is exactly what all the MCD's were. What if all the MCD's for the orbicularis oculi, which has an average of 40.0 for someone who is age 30, were all 55 MCD? What if none of them were higher, like 75 MCD? That would lead someone to conclude that it consistently tested on the low end.

Does that make sense? Do you remember bell curves (see below example)? It's how tests were graded way back when. They averaged the "average" kid's scores to get the grades - not very fair. What I think they need to do with the SFEMG MCD's is separate not only by age but by sex. Your average may not be the same as someone else. You are being judged by a group of people's "average."

I'm going to do something very uncharacteristic; I'm going to defend this doctor. If this doctor is an MG expert, then you went to him for that advice. If he is not a neuromyotonia expert, then he would feel out of his league in answering any questions about that. All neuros don't know everything and they hate to admit they don't. Yes, he should've at least commented on the leg issues and given you an idea of what to do. But if he was not comfortable addressing it, because it was outside of his knowledge, then he should've given you an idea of who could do it. If he even knows anyone who does, since not many people do!!!

Did this doctor say that you have MG?

From what I know of all your test results, it looks like you do have MG. Is that what you gather from it all? I don't know what other disease you were thinking of instead of or in addition to MG. It's always possible to have more than one.

Don't blame the doctor so much as "doctoring." There should be a place to go when a patient is undiagnosed, where they figure out what is wrong with you NO MATTER WHAT. That place does not exist yet. Aren't we lucky.

I'm sorry you don't have answers for everything. But it sounds like you have one answer. Maybe you can ask the local neuro to do a regular EMG on your legs when they are bad.

I've lost loads of money too on doctoring. You know the docs in your area are covering their behinds because they missed things - they even tried to get you to sign a waiver, getting them off the hook. They are all afraid of being sued.

Only you can decide what you do from here on out. You should feel good about the fact that you do have very positive results, which I think is worth the money. I'm sorry you didn't get everything you needed but maybe if you ask this doctor to at least comment in writing on the legs in greater detail, that might help.

I don't know what to say. I've lost a lot of faith in doctors and doctoring. I haven't lost faith in you and in the fact that it's obvious you have MG and probably something else going on. Maybe take some time to think and regroup, gather up what you do know and go from there.

My heart goes out to you.

Annie

http://emedicine.medscape.com/article/1832855-media

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Hi Annie,

Thank you so much for replying.

I'm 45, so it looks like the mean of the mean was in the abnormal range.

Reviewing all of this, there appears to be a discrepancy between the report and the letter. I think that that is where the problem lies. I'm going to assume that the original report is correct and that the frontalis is abnorma as was stated in the report, as you say 33% is pretty high, and the ocularis is borderline abnormal. I'll have to wait to hear back from the neuro to confirm that, of course. But since all of the data is in the original report, written 2 months ago, then I'm going to assume that that one is correct.

And yes, you are right - the 11% finding was accompanied by no increase in mean MCD so that would seem to lend itself to a borderline finding. Of course I'm no expert either, I'm just trying to piece this together.

Yes, I remember Bell curves. I've completed all of the graduate coursework for a master's in applied math and statistics. So I remember Bell curves, and gamma distributions, and logarithm distributions, and all of that. I understand confidence errors and standard distributions too, so I know what you mean. In fact, I was excited to see a mean of a mean since that was my favorite proof in grad school. And if that doesn't convince you that I'm a total geek I don't know what will!

I understand your point that this doc isn't a neuromyotonia expert. But we did discuss it quite a bit and he did ask his fellow to look up cramp fasciculation syndrome. He definitely left me with the understanding that that was something that he would look into and that he would discuss as part of the gameplan he would prepare for me. What he told me was that he would have several suggestions - on top of mg - that my local neuro could pursue. That's why I was disappointed that there was no mention of anything at all in the letter.

He did say that all indications were that I had mg. Sort of. I have it, but not full blown I guess you could say. Don't spend too much money on her, basically. I think that part was referring to immunosuppresants. No corticosteroids - it might make me fat. I'm being a little loose with my paraphrasing here. He really did say those things, but in a nicer way. And I can understand the corticosteroid thing as I am given to apple shape but only 7 pounds overweight officially. Still, if you measure that against the fact that I struggle everyday to get by it doesn't seem to count for much, in my always humble opinion.

I think that what you say about there needing to be centers for the undiagnosed is very, very wise. I look at all the money that has been spent in my case and it's a lot and most of it has been wasted. Most doctors will run and re-run tests and then wash their hands of difficult cases. The only problem, financially and humanely, is that we don't just disappear. Maybe they wish we would and, personally, there have been plenty of times when I wished I could too. But of course it doesn't work that way. Doctors of course don't get the support they need to spend the time and resources getting to the bottom of these difficult to diagnose cases, but I really think that in the end an idea like yours would save enormous amounts of money. And so much suffering.

Thank you so much, Annie, for taking the time to reply to all of my recent posts. I know it's really hard to deal with somebody, like me, who is angry and frustrated. The instinct of course is to run away! Or think I'm nuts. So, thank you so much!

I will take a breath now. You're right that I need to do that. If I could take a magic wand and make all the frustration and despair disappear I'd do it in a second. Don't have one of those, so I'm going to try watching Dancing With The Stars instead.

Ally

Ally, I think you have to keep these doctors holding to both their word and their findings. They can't just say this and then say that. So clarifying it all - in black and white - really helps you.

If I were rich, I'd start a center where "the undiagnosed" (sounds like a horror movie in the making) would get diagnosed. They would then be referred on to the appropriate specialists. No on-going care would be done there. Doctors would work in TEAMS and not even see a patient until they came up with a testing plan. Oy. The way they do things now is nonsensical, expensive and dangerous.

If a person doesn't go through what we - and others like Rach - have gone through, it's hard for them to even relate. It's such a betrayal of trust and so traumatic. All I ever wanted was to know what was going on and go back to work. As if.

And this is what I want to do to some doctors, to see if they are "real" ones . . .

You should be very proud of yourself. You've been through all this and are still fighting the good fight for yourself. Don't stop! You deserve the best of care, as we all do.

Annie

Annie, you are hilarious. Thanks for making me laugh.

I'm with you on the centre Annie. I'd fly to see the doctors there. Lol.