[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.

[AnnieB3]

Melanie, I'm so sorry. I personally think this guy is wrong in his assessment and the WAY he is thinking. As if every single symptom you have HAS TO add up to MG. Like you can't have more than one thing going on. B12, thyroid problems, electrolytes being off and a boatload of other things can cause twitching - as can muscle weakness. Even surges in hormones can cause twitching muscles.

Alice hit the nail on the head with that. Doctors often dig in their feet and can't admit they are wrong.

I think it's ridiculous to say (as is written up in all MG books and said by MG experts) that the SFEMG is the "gold standard" for diagnosing MG - after a clinical diagnosis points in that direction - and then say that it isn't enough to diagnose. What a bunch of hypocritical cowards. Sorry, I'm not in the mood today to mince words. It's like they are all so afraid of a lawsuit that they aren't willing to commit to anything.

I know some of you guys love this doctor but that doesn't mean he can't be wrong. For a doctor to "proclaim" that someone doesn't have a disease without looking the patient over himself first is unethical. What's written down on paper is often not the whole picture and a neuro has to assess a patient himself/herself to really know what is going on.

Shortness of breath that worsens after exertion doesn't fit?!!! What the H@!! Then I guess fatigable weakness doesn't fit MG either. I'm sorry if I'm offending anyone who loves Dr. Nicolle but this is ridiculous.

Were you on drugs when you had the EMG? Was it a regular EMG or a SFEMG? Was it done on the same muscles as your positive SFEMG? Comparing apples to oranges does no good with EMG's either.

Sometimes going to more than one "expert" is not a good thing. They don't want to, or should I say "dare," step on each other's egos.

Melanie, I'm sorry you were treated in this way. You deserved better. It reminds me of how Lucy always pulled that football out from under Charlie Brown. Is that how doctoring should happen? Nope. Hang in there.

Annie

[rezmommy]

Thanks Annie.
My regular neuro is young and took no offence to me wanting to see if I was on the right track treatment wise. I had read about Dr. Nicolle and his wealth of experience. The reason that I asked to see him was that I figured that he would know "atypical" just as well as he knows "typical".

I had stopped Mestinon for a week before the EMG studies. I was still taking Imuran and Synthroid at the time of testing. I had EMG and SFEMG done. The SFEMG was not done on the same muscles for which the diagnosis was made.

I wonder what happens next. I don't see my neuro until August. Does this mean that Dr. Nicolle's report will mean my diagnosis will be taken away? An experience like this does make a person take a long hard look at themself. Are my eyes really droopy? Can I really not swallow anything but soft foods safely? I rambling now so I will stop.
Thanks again ~ Melanie

[alice md]

Originally Posted by AnnieB3

Shortness of breath that worsens after exertion doesn't fit?!!! What the H@!! Then I guess fatigable weakness doesn't fit MG either. I'm sorry if I'm offending anyone who loves Dr. Nicolle but this is ridiculous.


Annie

Annie,

You may think it's ridiculous, and so may I , but according to the paper I cited, which was published in a reasonably good journal, true fatigable weakness doesn't fit MG.

I may have not made it clear, but according to my understanding, this is the major conclussion of this paper.

unless I have developed some severe cognitive dysfunction and can't understand what I read. I read it twice, and marked all the pertinent parts, because I couldn't believe that I have understood it correctly.

it's like I would write a paper saying that patients with leukemia have normal blood counts, and if their blood counts are not normal, it has nothing to do with their illness. My proof for that would be, that I have checked the blood counts of 20 patients after treatment with chemo, and even those that still had some blasts in their bone marrow had completely normal blood counts. some recieved blood transfussions before, but this was unimportant. So, although leukemia is considered to be a disease in which there is supression of the bone marrow, and decrease in blood counts, this does not seem to be the case. further studies are needed to understand this discrepancy.

I am sure that had I sent this paper to a reasonable journal, I would be declared a lunatic. But, this paper was accepted for publication!

this is the abstract-

"Myasthenia gravis (MG) is characterized by fatigue and fluctuating muscle weakness resulting from impaired neuromuscular transmission (NMT). The objective of this study was to quantify, by direct measurement of muscle force, the strength and fatigue of patients with MG. A maximal voluntary isometric contraction protocol of shoulder abductors was used in conjunction with conventional fatigue and disease-severity instruments. Results from patients with (D-MG) and without (ND-MG) decrement on repetitive nerve stimulation (RNS) of the spinal accessory and axillary nerves were compared with healthy controls. Patients with MG reported greater fatigue than controls. Muscle strength was lowest in the D-MG group, followed by the ND-MG group and controls. Normalized shoulder abduction fatigue and recovery values did not differ between the D-MG and ND-MG groups or controls. The RNS decrement appears to relate best to disease severity and muscle weakness but not to objective measures of fatigue in this population. Muscle Nerve, 2009"

and thse are a few citations from the paper itself-

In summary, subjective appraisal of the degree of fatigue experienced between ND-MG and D-MG groups was similar, with both patient groups describing greater fatigue than controls

In summary, clinical evaluation of both patient groups indicated that the D-MG group had greater disease severity, but similar baseline upper extermity strength, when compared with the ND-MG group.

The major findings of this study are that, despite higher levels of experienced fatigue in patients with MG, objective measurements of muscle fatigue and recovery using a force dynamometer did not differ between patients and controls. However, the baseline MVIC strength did differ between groups. The D-MG group produced the lowest MVIC force, followed by the ND-MG group and controls, respectively.

It was also of considerable interest to note that an experienced clinician detected weakness in the deltoid muscle in 9 of the 12 patients in the D-MG group. The same clinician detected fatigable deltoid weakness on MMT in all patients in the D-MG group, but also in over half of those in the ND-MG group, among whom there was no weakness present at baseline.

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.

The apparent discrepancy between experienced fatigue and measured muscle fatigue also needs to be resolved. The contributions of this investigation to the understanding of weakness and fatigue in patients with MG who present with varying RNS results have provided a foundation for future studies.


so now this experienced clinician knows that even in patients which he thinks have true weakness, it may not be "real". and due to central weaness as a result of lack of effort, which is difficult to differentiate from "true" fatigable weakness.

the opposite (that he may be interperting true weakness and fatigability as due to central weakness, because of this difficulty) does not seem to bother him, nor any of the other authors of this paper.

nor did it bother the world leading expert that sent me home with rapidly declining respiratory muscle tests, that were not "real" as this was due to central weakness as a result of lack of effort.

So, if two world leading experts reach the same conclusions independently, we only need a third one to verify it beyond doubt, and I am sure that person will soon be found.

alice

[AnnieB3]

Melanie, I truly understand what it's like to even question you sanity when you can "see and feel" MG, have proof and a diagnosis and then have someone doubt the disease. Sometimes they doubt the patient too, which infuriates me.

If someone had cancer, had chemotherapy and then no sign of the cancer, would a doctor say they never had it? If someone had hives from an allergic reaction, took Benadryl and Prednisone for the reaction and the hives disappeared, does that mean they were never allergic to what they reacted to?!!!

I never knew I had mononucleosis. Some doctor ran the antibody panel which shows if you've had it in the past and/or still have it. That antibody panel proves I had mono, even though I didn't know when I had it!!! I swear, medical logic is an oxymoron.

I forgot that you were on immunosuppressants. Well, that explains a lot, doesn't it? They give us drugs to make the disease disappear, then when it does, they think we don't have the disease anymore. You know how young kids go through that "peek-a-boo" phase of development, when they don't believe something is there until it pops out to reveal itself? I think some of these neurologists get stuck in that phase.

I really don't think some doctors know how to be empathetic or think outside their view of things, even if they are wrong. It's hard to be open-minded when you've been taught for so many years that you should only look at facts, you need to be only objective and you are always right. That is what they beat into them in medical school, you know.

Yeah, you better stop eating altogether . . . or see a psychiatrist to help you understand the Freudian reason why you hate food and are afraid to swallow it.

I think that if you remain calm, are logical and express all this nonsense in an objective manner to your "real" neuro, it will all be okay. Hang in there.


Annie