[rbwalton]

Hi-
I have certain symptoms that to me suggest MG. And I wondered if maybe I was close, or possibly reading too much into how this is going. . .

Starting late 2006, I had a flare-up of Neuralgic Amyotrophy which left me with a winging scapula- mainly on the right, but a bit on the left as well. Part of the way NA works is to leave you with persisting weakness. But, it is supposed to go away eventually. My weakness is not acting quite right for simple NA.

Starting with the winging, I lost strength in both arms- going from being able to do 20 pushups early in 2007 to doing none a few months into the year. This lasted around 2 years. Also during this time, I had weakness in lower back and thigh area, and had eye problems developing: high intraocular pressure, blurred vision and double vision. Since this time I have had a heck of a time getting new prescription for glasses that will work more than a few months. I have problems reading for more than 20 minutes or so at a time.

I would try a couple of times a week to see if I could do any exercise. If I did pushups at all, they were modified so I was at a 45 degree angle on a desk for example. I would try sit-ups and the most I could do was 4-5, and that would be excruciating. Resting for 20 minutes, I would try again and not even be able to move, let alone sit up.

Earlier this year, my strength returned for a brief week or so, and I was able to work myself up to 25 pushups, and 15 sit-ups- only to have strength drop off again to almost nothing. I mentioned this to my doctors, and they suggested I was doing the exercises incorrectly.

Then, I had another return of strength and got up to 25 sit-ups and 35 pushups a day. I was fine for a couple of months, and then noticed I was getting a bit of a shake going again when exercising. Now I have dropped off again to being able to do only 7 pushups if I really push it.

If I read more than 10-15 minutes, I have trouble keeping my eyes open. I have periods where I will have Nystigmus and double vision.
My lower back feels like it is not supporting me as it should. My legs feel heavy after walking a brief time.

I have tremor and twitches that are more or less controlled, but they break through on occasion.

It is the eyes and fluctuation of strength that bothers me most at this point, and these are the symptoms that my doctors are choosing to ignore.
Does any of this sound familiar to those with MG?

[suev]

There are many things in your description that could lead one to think of MG. But there are other things that could come into play also.

Do you need a PCP authorization to see a neuro (or would your PCP be willing to refer you to one?)

Seeing a neuro who has experience with MG patients might be the best next step for you to take. You know something isn't quite right. It's time for you to find out what is going on.

Let us know what you decide (and how it goes). Good luck!
Sue

[rbwalton]

I had an appointment with a neurologist for my tremor. When I asked about fluctuations of muscles and MG, he suggested that I must be exercising incorrectly- or if he was not not sure I was exercising correctly, he could not be sure. He then said I might not be exercising enough. When I said what I was doing, he said it might be too much and that I could have in effect blown some neurons that had been trying to recover from my other issues. Seemed to me it was the basic doctor double-speak when they are hit with stuff they do not want to deal with. Like the old joke. . . Patient says, "Doctor, it hurts when I do this". (patient waves arm overhead) Doctor response, "Well, stop doing that!"

What makes it confusing also is that my main condition is rare enough that no one really knows much about it long term. There have not been enough studies at all, and none really long term to see how people really do recover over time. So, this weakness could still be part of that too I suppose.

Originally Posted by suev

There are many things in your description that could lead one to think of MG. But there are other things that could come into play also.

Do you need a PCP authorization to see a neuro (or would your PCP be willing to refer you to one?)

Seeing a neuro who has experience with MG patients might be the best next step for you to take. You know something isn't quite right. It's time for you to find out what is going on.

Let us know what you decide (and how it goes). Good luck!
Sue

[AnnieB3]

Hi. I had to look up your disease to know for sure what it was!

It sounds like it only affects the shoulder/arm area. Is that correct? It's a peripheral nerve condition, like Guillain-Barre. Anything related to the peripheral nerves might benefit from sublingual methylcobalamin (B12).

Not exercising correctly? That sounds like a doctor out of his league.

High intraocular pressure is not MG-related. Have you been to a neuro-ophthalmologist for assessment? When you close one eye, does the double vision go away? It does in MG and is called binocular DV.

When your symptoms began for Neuralgic Amyotrophy, where exactly did they begin? Did they do genetic testing to figure out for sure that's what you had? Sometimes they do get a diagnosis wrong!

MG is all about muscle weakness that gets worse upon exertion and relatively better with rest.

I think maybe you should consult with an MG specialist to make sure about what is going on. I hope you can get answers!

Annie

[rbwalton]

Hi ANnieB3
Actually, Neuralgic Amyotrophy can impact about any of the plexus sites from cervical to lumbosacral, so it can impact lower cranial nerves, phrenic nerves, and down into the legs and everything in-between. Most websites concentrate on the arms because it is the area that symptoms are most easily seen- that may be due to the complexity of the shoulder and the more obvious difficulty of the shoulder and arms to function with missing nerves and muscles.

I have pretty much a textbook set of symptoms for NA and even with that, the doctors missed it originally and though I had muscular dystrophy. It started with pain in shoulders and was followed some time later with the loss of function of first my right hand and then my right scapula. Now on closer exam, doctors see that my left hand and scapula are also involved to a lesser extent as far as the severity of the apparent symptoms. I started noticing weakness elsewhere at the same time. They think of this as only attacking the brachial plexus. I figure that whatever attacked there could also attack other spots either at the same time or that I would notice it later. The literature is not really there to say just how involved a single attack can get, or if the weakness is as weird as my weakness has been. They say lingering weakness is possible, but do not say that after recovery of strength that it will go away again and cycle numerous times as I have experienced.

As far as genetic testing goes; there are two types of NA. One can be brought about by any one of a list of causes and usually is seen in the shoulders only and does not repeat. And then there is the genetic variety. The genetic variety is more prone to attack repeatedly (as mine does) than the other. Also, the genetic type is more likely to attack in other plexus areas. There are other reasons to suggest my case is of the genetic type, but so far no one has suggested testing. Why? The test is not cheap for one thing. It is not as simple as doing a blood test. Also, they say that whether my case is genetic or not would not change my treatment or prognoses.

My eyes going bad at the same time this happened may be a symptom of other stuff, but it is an odd coincidence at least. My double vision is in both eyes. If I close one, the other stays double. I guess that would not fit MG. I was not aware of the differences in MG.

Thanks for reply-

Originally Posted by AnnieB3

Hi. I had to look up your disease to know for sure what it was!

It sounds like it only affects the shoulder/arm area. Is that correct? It's a peripheral nerve condition, like Guillain-Barre. Anything related to the peripheral nerves might benefit from sublingual methylcobalamin (B12).

Not exercising correctly? That sounds like a doctor out of his league.

High intraocular pressure is not MG-related. Have you been to a neuro-ophthalmologist for assessment? When you close one eye, does the double vision go away? It does in MG and is called binocular DV.

When your symptoms began for Neuralgic Amyotrophy, where exactly did they begin? Did they do genetic testing to figure out for sure that's what you had? Sometimes they do get a diagnosis wrong!

MG is all about muscle weakness that gets worse upon exertion and relatively better with rest.

I think maybe you should consult with an MG specialist to make sure about what is going on. I hope you can get answers!

Annie