Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 05-27-2018, 09:30 AM #1
Comeonthen Comeonthen is offline
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Default Abnormal Single Fiber EMG

Hi

I have suffered from global muscle fatigue after chronic exercise for many decades but have lived with it mainly by avoiding chronic exercise, using caffeine and smoking (although gave that up 6 years ago). I started taking daily transdermal magnesium 5 years ago and having regular massages after exercise. The symptoms became much worse and in the past 2 years began to suffer from bouts of slow moving limbs. I stopped the massages and the symptoms improved. I recently stopped the magnesium and the slow moving limb symptoms completely ceased. I have noticed the symptoms get worse a couple weeks after an infection / physical trauma

I recently had a number of tests for MG all of which were normal, except my facial / eye muscles during a single fiber EMG test. The test was undertaken twice and abnormal both times. The Drs said it was consistent with mild ocular MG although ironically I have no obvious ocular symptoms. They have called it pre-clinical, although the doctor who undertook the test said that although it was mildly abnormal it was definitely abnormal and he would normally expect to see symptoms with my results.

The Dr suggested Pyridostigmine although I haven't tried it yet. I did try galantamine which gave my acute diarrhea, dizziness and did not seem to improve the symptoms.

I am unclear if I have MG or not, what do you think? As above, I find it interesting that magnesium caused symptoms as I have read this happens with MG. I have also noticed that steroids prescribed in the past for unrelated conditions provided lots of energy and strength (along with side effects, of course). But on the other hand I have no ocular symptoms which is the only part of my body with a positive test result, ironically the EMG was negative for the rest of my body where I do feel fatigue.

Last edited by Comeonthen; 05-27-2018 at 12:10 PM.
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AnnieB3 (05-27-2018)

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Old 05-27-2018, 05:58 PM #2
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Did your doctors do the MuSK antibody test? The LRP4 one? Did they check you out for LEMS?

Patients can have no obvious signs of MG and have a highly positive SFEMG. An MG patient can be in a wheelchair from weakness and have a negative SFEMG. That is a statement directly from MG experts.

Did they do the SFEMG in your limbs? They normally would do the wrist, shoulder, and eye area.

What doctor gave you galantamine? That is normally used for dementia (which doesn't directly affect the disease but cognition, allegedly), not MG. Those drugs act differently than Mestinon. The issue with MGers is not the production of a neurotransmitter. We have plenty of acetylcholine. What Mestinon does is to keep the enzyme AChE (which mops up ACh after it's done with the job of making muscles strong) blocked so that more ACh can try to make its way into our muscles. The receptors to the muscles are damaged, causing our muscles to not have enough ACh.

Mestinon can cause diarrhea in some people. I don't have issues with that myself.

Seeing a neuro-ophthalmologist can be helpful to determine if you do have double vision or other signs of ocular MG. The fact that the muscles were abnormal (via SFEMG) suggests that there should be clinical signs of MG in that area. That type of doctor can do more specific testing to determine that.

A SFEMG is not necessarily specific to MG. They really should do other tests, like the antibody tests above, and pulmonary function tests. A muscle biopsy is not out of the realm of testing possibilities.

If it were me, I'd want to be sure of a diagnosis, before I took a bunch of drugs! And the drugs for MG, such as steroids, can make the signs of MG go away, thereby making a diagnosis that much more difficult.

There can be many causes for muscular symptoms. I hope you have a good primary doctor to check for other issues. Whatever is going on, I think that you need more doctoring to be sure. But that's just my opinion.

Annie
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Old 05-27-2018, 07:03 PM #3
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Thanks for the reply, Annie.

I saw a very senior clinical neurologist who specializes in neuromuscular problems. He did quite a few blood tests including MuSK, although I did not see the LRP4 test (I thought that was just experimental?). I live in the UK.

He referred me to the emg specialist (electrophysiologist?) for the single fiber EMG. He tested all over the body to the best of my knowledge including my legs, but he said it was only abnormal in my ocular muscles. Both left and right sides. He repeated the test twice in two different clinics to make sure as he could not believe I did not have ocular symptoms. He said only MG fits my symptoms (generalized fatigue after exercise / infection) and not any others that would produce a positive EMG. What the tests for LEMS be?

I bought Galantamine myself as I read it was a natural substance that achieved the same end point as Mestinon (more acetycholine). Have you tried Huperzine A? Have you considered stem cell treatment?

I will try to get a referral to a neuro-ophthalmologist. I am short sighted, but I do not think that is related. I have noticed I have to provide effort to focus at close range sometimes, so perhaps that is related.
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Old 05-27-2018, 08:26 PM #4
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Well, I thought I only had blurry vision my entire life. I was only diagnosed with double vision/MG when I was 41. I was misdiagnosed with lazy eye at age 10. I've had MG since around birth. That's why a N-O is so important to see.

VGCC is the test they do for LEMS.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4360501/

MGL1 - Overview: Myasthenia Gravis (MG)/Lambert-Eaton Syndrome (LES) Evaluation

Congenital myasthenic syndromes are prevalent in Northern Europeans (UK included, in spite of Brexit!). There are blood tests readily available there for that. As you can see from these sites, there are a lot of diseases that affect the muscles. However, MG/LEMS/CMS are all about fatigable muscle weakness. But each has its own unique features.

Neuromuscular Syndromes

Congenital Weakness

Myasthenia Gravis: Differential Diagnosis

The LRP4 test hasn't been available that long, and the same company who does the MuSK does that one.

Huperzine A acts like Mestinon does, as a cholinesterase inhibitor. They both inhibit the enzyme Acetylcholinesterase. I have not tried that supplement. I use Mestinon (don't use both!). People with a normal amount of acetylcholine getting to their muscles can have symptoms of an overdose and cause muscles to become weaker.

Even natural substances can cause serious side effects. Diagnose first, objectively experiment later!

A SFEMG can be positive in LEMS and a CMS. In some of the CMSs, people can have too much acetylcholine. And in some of those, the ocular muscle are spared. How long have you had your symptoms? You say decades. But have you had symptoms since birth? The CMSs are genetic, and symptoms can be present since birth.

Oxford University does a great deal of research on MG and CMSs. I can't say that I would recommend seeing anyone there though.

I hope your docs can pinpoint exactly what is going on. That's important! If you have a CMS, for example, steroids wouldn't help, since they are not autoimmune diseases.

Annie
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Old 05-28-2018, 09:50 AM #5
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My report says full blood count, CK, CRP, renal function, ESR, Acetycholine recpetor and MUSK antibodies were all negative. So it would appear they did not test for the others.

The single fibre EMG report was tested in the right deltoid, right cervical pararspinal, left edc, left deltoid, left orbicularis, left trapezius

Summary: there are significant fibre abnormalities seen in the left orbitcularis oculi with evidence for both increased jitter and NMJ block. These are similar to the right side tested previously. The degree of abnormalities is outside the normal range and a level I would usually see in a patient wiht a clear history of ocular MG. Extensive single fibre EMG elsewhere today indicates only 2 motor fibres with a mild excess of jitter, both in left deltoid, given the amount of sampling these findings are within normal limits.

My symptoms started arguably many years ago as a young adult after having glandular fever. My ability to exercise has since been limited, although I avoid exercise I can be fine.
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Old 05-28-2018, 07:24 PM #6
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I would think that more testing, such as CMS, would be a good idea. Also, B12 deficiencies are common in Northern Europeans as well.

Your neuro really needs to determine if this is autoimmune or genetic.

Annie
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Old 05-29-2018, 08:54 AM #7
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Just to add my story, in case it's helpful.

I have repeatedly tested negative for antibodies (AChR, MuSK, LEMS, and recently LRP4). I had two SFEMG's that came back borderline. Then I saw an MG specialist, and he did a SFEMG on my face around my eyes, which came back strongly positive. This seems weird to me because I rarely have eye symptoms--I mostly feel the weakness in my arms, legs, and trunk. I have no eyelid droop, and brief double vision (a few hours) maybe three times a year. The MG specialist told me that the facial muscles reveal MG best even when there are no noticeable symptoms in that area. I don't really understand it.

I have heard that the SFEMG test is non-specific for MG, but I can never get a good answer when I ask what else a positive SFEMG can indicate. When I google, I get this list: motor neurone disease, polyneuropathies, polymyositis, and Facioscapulohumeral dystrophy. I guess my doctors have ruled out the others on the basis of my symptoms. I've had symptoms for nine years now, and I'm not getting worse.

So I have a tentative diagnosis of MG, but I still feel like I'm a mystery, because the following treatments have not helped me: Mestinon; IVIg; Imuran (several years); and Prednisone.

Abby
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Old 05-29-2018, 11:22 AM #8
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Thanks, Abby. We sound similar in some respects. I think when I challenged my doctor he mentioned something similar. That is, the ocular muscles are super sensitive to problems in the nueromuscular junction. Therefore the test could be positive in that area well before the test is positive in other areas, even though the weakness predominates elsewhere. I guess for that to make sense, he is saying the test is more sensitive to abnormalities in the ocular muscles than elsewhere.

My problem is fatigue and not functional weakness per se (that is nothing literally stops working) in my arms and legs. Made worse by chronic low level exercise or acute one off exercise. Chronic Magnesium caused slow moving limbs

Incidentally I just tried supplementing with Manganese and it seems to of helped. I appreciate that sounds a bit quacky, but I did a google search and there are some references to it being an effective treatment for MG. At least one, albeit very very old and not RBC, published piece of research also suggests it's effective
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Old 05-29-2018, 02:27 PM #9
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The ocular muscles are 100X as strong as they need to be to control the movement of the eyes. I suspect that's Mother Nature's way of ensuring we can quickly protect our eyes from various dangers. So, by the time we DO have vision issues, those muscles are toast. If you look at it that way, it makes perfect sense that the weakness could be detected earlier, and more accurately in the oculo-facial muscles than those of our limbs.

Hope this helps.
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Old 06-01-2018, 09:31 AM #10
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Thanks, yes that makes sense. It's interesting however that some people with ocular symptoms do not have a abnormal single fiber EMG, although I think the sensitivity is about 90%.
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