can you send me the docs associated with "ask for the approval of the IRB of my hospital" perhaps if I can review/understand I may be able to make suggestions re what would be parallel for internet application

I will look through the pdf later as I have decided to go to crafts store and buy a "paint by number" or something (havent done since I was a kid but I need something like that in my life since I cant do the physical stuff i used to do)

That is a good point.


There are 19 hospitals with neurology departments in the country that I live. I can distribute a copy of the finished publication to all of those without any problem.

Also thought about a link to a power point with that/similar information on this site that you can easily navigate to and which is also easily accessed by search engines.

Good Luck to all

A.

What I meant is that when you submit a paper for publication, it goes through a peer-review process. This means that as a first step the editor of the journal decides if there is any interest in the paper and if there is, he sends it to 2-3 who are considered experts in the field to see what they think about it.

It is quite common to receive data (or samples) from colleagues regarding their patients. But, not very common to receive medical data from the patients themselves (this goes with the approach of physicians are " objective" and reliable, whereas patients...). Although I have seen some papers on CFS written in that way. (In fact I think the CFS community is one of the most proactive group of patients I have encountered).

At the same time there is a growing understanding in the medical community that the " subjectivity" of the patient is important.

As to the legalities-for a case report (describing one patient) you do not need approval of the IRB, only a declaration by the author that the patient consented. So, possibly we could do the same here.

Another possibility is to ask the neurologists taking care of the patients to be co-authors on this paper. It is quite common for physicians submitting patient data or samples to be co-authors and if we do that it will be much easier to get it through.

We could also write an e-mail to more open-minded neurologists and ask them if they have any patients and would be ready to participate in this paper.
The more authors we have on this paper, the larger the number of neurologists we have reached and the more likely it is to be accepted to a prestigious neurology or even general medical journal. In fact, if we can get someone considered a leading expert to be the first or corresponding author, it is likely to have a much larger impact.

What do you think?

This is great progress......


This is a great strategy.....

A thought......

For those people who have a good example of delayed/difficult to diagnose MG but that do not feel confident in writing their story or that feel like they are treading in unknown territory. Is there something in between this here:

And this here:

Like a framework or a few very short and leading but open questions like:

1) Include information about.......
2) Describe.......
3) Etc......
4) Etc......

What do you think? Could this be useful, or not?

I would be very happy to be involved in this. Having recently completed a PhD and published in peer reviewed journals myself (not medical, but am familiar with the process etc.) one of the ways I recently went about trying to understand my condition was by drafting an article using myself as a case study and drawing up research from journals that could support a case for an MG diagnosis. I found that I could make a very good (objective) case that way. However, as I am not yet diagnosed, I'm not sure how helpful my input would be. Let me know if I can help in anyway.
wild_cat

Thanks, this would be very helpful.

Alice, Have you considered going through MGFA to get both neurologist and patient assistance with an effort like this? It would seem like coordination would be difficult at best in a forum setting.

It's a great idea but is fraught with many difficulties. I personally would not feel comfortable with giving my "real" information out on a forum, even with the "nameless" designation. Sorry, that's just how I feel.

Annie

anyone know if the MG Foundation has a registry?

Annie,

that is fine, and I can fully understand the way you feel.
I can only do what I can, not more than that.
I can't even promise that my idea is going to lead anywhere. It may fail anywhere along the way.

The MGFA do not need me. They have enough physicians and patients, and had they wanted to promote better diagnosis of less typical cases of MG, they would have done so long ago.

The prevailing concept about MG is that it is a disease of the neuromuscular junction. Therefore normal NMJ transmission= no MG. Therefore a SFEMG done on a weak muscle by a proficient EMGist= no MG. The MGFA fully endorses this approach. (at least according to what is written on their internet site and the answers you can get from those considered leading experts).

You can agree (or disagree) with me that this is not so, and MG is a disease of fatigable muscle weakness which can be caused by any abnormality along the way from the NMJ to the final muscle contraction.

You can decide that you want to join my effort in trying to convince the medical community that there are numerous patients who fall between the cracks because of this approach or you can decide that this is a futile effort you do not want to participate in.

I too am risking quite a lot by suggesting to write such a paper, because I know that many of my colleagues will see this as an ultimate proof that I am a cyberchondriac. For me it is much easier and safer to keep my "MG" world away from their eyes.

The reason I decided to do this is because of the numerous patients I have encountered on internet forums like this one. Patients who are being treated with disrespect, disbelief and possibly their lives are put in danger, because of the horrible "sin" of having no evidence for NMJ transmission abnormalities. Patients who shouldn't have even known or been interested in what their NMJ is doing, are made to be obsessed by this as if their life depends on what their SFEMG pattern is going to be (and in fact as ridiculous as it may sound, it does).

6 years ago, when I was still working full time, but after a 3 week hospitalization with a myasthenic crisis, my neurologist (at that time) said to me that clinically I have MG, but he needs objective proofs for that.

He did a SFEMG numerous times, had me stop all meds for it, came in the evening when I was at my worst. He even did an EMG of my diaphragm (as my most prominent symptom was breathing difficulties) And trust me, he is one of the experts in the field.

At one point, I said to him-maybe if there is no evidence of NMJ transmission abnormalities, the problem is not in the NMJ, but in a down-stream protein?

His response to this very reasonable suggestion was-Have you thought of consulting a psychiatrist?

He treated me for " possible MG" (which involved numerous humiliating experiences by the staff in his ward), this changed to unlikely MG and than can't be MG. At some point I preferred to just take mestinon and learn to live with my illness on my own.

3 years later, when there was a significant deterioration in my condition, which made my respiratory physicians very concerned. He convinced me to go back to my neurologist who decided to do a muscle biopsy ( I still don't know if he was seriously searching for some extremely rare myopathy or did it to prove to me that I had " nothing" ).

This muscle biopsy was the last straw that tipped me over the edge. Despite a drop in O2 sats (which were repeatedly ignored by the staff after he reassured them that I was just " anxious") I was sent home in what you may call respiratory crisis. My respiratory physician (as I soon found out) was also reassured that there is no need for his concerns.

I lay in bed most of the day, fighting for every breath. But, I had a few hours each day in which I was able to move in bed and even talk for a short while.
I knew I had to use those brief moments to find the way to save myself. You don't have to be an experienced physician to understand that if you have breathing difficulties just from the effort of moving in bed and your O2 sats have dropped (when they were measured) you are in serious trouble.

I called my respiratory physician and from the first sentence he said, I could sense that he is thinking very differently. Upon my questioning, he admitted that my neurologist told him that I am suffering from emotional problems. (and indeed I no doubt sounded very anxious when I had to stop after each word). I thought about my patient with schizophrenia and how I fought to save his life. I said to him- Maybe I have severe emotional problems, but even schizophrenia should not be a death sentence.

I then e-mailed an excellent pulmonologist who was my program director during my residency. He answered right away giving me his cell phone number. Just from talking with me for a few minutes he realized the severity of my condition. He said I should have a sleep study, be given non-invasive respiratory support and continue to search for the cause of neuromuscular disease. Fortunately, my respiratory physician trusted this advice more than what my neurologist said to him.

To cut a very long story a bit shorter- I was eventually given respiratory support. I was referred to a center in which they could do " objective" measurement of respiratory muscle strength. I was eventually found to have anti-MuSK antibodies using a cell-based assay. And last but not least-I am still alive and for the last year finally receiving proper medical care from an excellent team of physicians.

It is quite possible that had I not been a physician, I would not be here today to tell you all this.

The neurologist who took care of me at that time, now readily diagnoses MG in patients with normal test results ( I have been in touch with two of them and I sure there are more). This is after I have had extensive e-mail discussions with him, which I believe made him at least question his axioms.

The same neurologist who thought I should consult a psychiatrist because I suggested that there may be a problem in a down-stream protein, is now cautiously ready to consider this possibility.

Maybe I am naive, overtly optimistic or plain stupid, but I want to think and hope that other neurologists once presented with such evidence will be ready to do the same.

Recent studies show that MuSK has numerous cellular functions other than assembly of the NMJ. Other studies show that anti-MuSK antibodies are directed towards domains of this protein which are involved in cellular signaling. This is just the edge of the ice-berg, but it is supportive evidence.

Someone has to take all this data, put it together with the clinical data. We can wait for that to happen 20 years from now, or do something about it so it will happen now.

Is it fraught with many difficulties? Yes, it is. Should we take the risk and try and overcome those obstacles so there will be no more patients like me and Chloe Atkins? (and possibly many others who are not capable of telling their hard to imagine story). That's a question I posed here for you to decide.