[rezmommy]

Well yesterday was my appointment with Dr. Nicolle. The dr came in and introduced himself and sat down. He said "I have reviewed your chart that was sent to me." And then he said " I don't think that you have Myasthenia Gravis." What???? I could not believe that he had just said those words.

The dr went on to say that he feels that diagnosing on the basis of a positive single fibre EMG only is not right. He also said that some of my symptoms don't seem to fit. I have tingling in parts of my body from time to time. We had a great discussion over weakness vs. numbness. He also felt that my shortness of breath that worsens after exertion did not fit.

I am seronegative. He repeated the bloodwork but results will not be available for a while. He had his associate do the EMG studies. The associate said that she could not find any evidence of MG. The muscles that were tested to get the diagnosis were not tested yesterday.

Well I have told myself not to concentrate on this for too long or I will make myself feel worse. I just wanted to give an update. I don't see my neurologist until August so we will see what is next. Take care ~ Melanie

[Stellatum]

Hi, Melanie. I'm in the same boat. I've never been so devastated to be told I don't have a disease! It's not that there's anything desirable about MG--it's just that it's so hard not to know...especially when there's nothing else that really fits. So I'm really sorry you're going through this.

Abby

[art chick]

I am so sorry!! I totally know what you mean. . . what are you supposed to do now? I mean all things considered, there must be enough going on for you to still need some kind of treatment, right? So, then there is the question of who is going to take responsibility to give you the medication and for what exactly are they treating you for?

I mean right now they are treating me with prednisone and mestinon for a whole host of symptoms that look exactly like MG but I am sero-meg too but it's not like they can stop. I mean, I just started again with choking/ swallowing and walking problems over the weekend with a measly 5 mg reduction in pred. We are kinda stuck here. . .at least right now.

Do you have someone giving you meds in the meantime and taking care of you?

debra

[rezmommy]

Thanks Abby and Debra.

I am going to continue my meds and go to my IVIG treatments until I meet with my regular neuro in August. My first symptoms appeared in Aug. 07 and I was diagnosed in Nov. 08. It seems like I may be back at square one. I trust my neuro so to say that I am shaken and confused is an understatement.

[alice md]

From my experience, the more experienced and knowledgable MG experts are, the less likely they are to be able to truly think "out of the box" and understand the complexity of the myasthenic sydromes.

They are also probably more afraid then others to make a wrong diagnosis of this illness, or treat a patient for MG symptoms when they are "central". A young and relatively inexperienced neurologists can "take the risk" of being told by a colleague that his patient doesn't "really" have MG. Someone like the neurologist you went to, "can't afford" to be in such a situation.

It is very similar to the "Emperor's new clothes". They all know there is a significant problem in their diagnosis and management tools, and will admit this in private conversations, but none is ready to be the first one to publicly say this.

Also, this specific neurologist, you are talking about, was recently a co-author of a paper in M&N that showed that even in patients with classical seropositive MG, and a decremental response on EMG studies, there is no "true" fatigable muscle weakness.

Muscle strength and fatigue in patients with generalized myasthenia gravis
Caitlin J. Symonette, MSc 2, Bradley V. Watson, BSc 1, Wilma J. Koopman, MSCN, RN 1, Michael W. Nicolle, MD, DPhil 1, Timothy J. Doherty, MD, PhD 1 *


this is one of the "pearls" from this paper-

"In keeping with previous studies that showed a higher rate of experienced fatigue in patients with neuromuscular diseases, some patients may have central weakness as a result of lack of effort, and this is sometimes difficult to differentiate from true fatigable weakness".

alice

[rezmommy]

Thanks for the info Alice. I especially liked the "lack of effort" part.