NeuroTalk Support Groups - How do you cope?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - How do you cope? (https://www.neurotalk.org/myasthenia-gravis/172697-cope.html)

Quote:

Originally Posted by teresakoch (Post 907632)

While it is very frustrating to finally "get" a diagnosis of MG, we must remember that only 600 new cases are diagnosed in the US each year - in a country of over 300 million, it's not hard to understand why even the best doctors sometimes miss it.

It's a subtle and slow-acting disease in most cases - by the time we realize there IS a problem, we've probably had the disease for over 10 years; it can take many more years for a doctor to check off all of the boxes of what it ISN'T before they (possibly) think "MG".

Doctors are human, just like the rest of us, and they will usually only see any given patient for 30 minutes to 1 hour each year - it's hard to know what's really going on in a person's life when you aren't living in their body day in and day out.

Thankfully, we have forums like this where we can talk with other people who are going through the same things that we are and who understand what we are talking about!

I agree that its not the first thing doctors think of when people come in with the type of complaints we have. Add to this that I was on TNF blockers which were masking some symptoms and I became harder to diagnose. My current neuro thinks they have value in treating MG and wanted to use me as a test case to see if traditional MG meds + TNF blockers would make a bigger difference, but wasn't able to get it approved.

The problem I had with the neurologist I'd been seeing for so long went beyond that, though. He couldn't believe he had missed the MG for five years and questioned the diagnosis. When I didn't want to go back to the doctor who used surgery as a diagnostic tool, I was told by my primary to make an appointment with the neuromuscular expert from the practice I'd originally gone to. After doing so, I got a call back that I was a patient of the senior partner and he doesn't share patients, so they rescheduled with him.

When I came back in, he told me he didn't trust the test results from the other doctor, that he wanted me off all MG meds for six weeks, then would redo the EMG, SFEMG, and blood tests. Despite the fact that the meds were helping I did this, but then had a conflict on the testing day. When the confirmation call came for the test, I pressed the button to cancel. When I didn't show up at the test, I got an angry phone call from the practice and was told I'd be charged as no-show. When I said I canceled on the confirmation call and needed to reschedule, they told me that they noticed I cancelled, but its an important test so they put me back on the schedule. I told them that they never notified me of this so I was not a no-show. To save me from typing the entire argument, I'm persona non grata at
the entire practice now (at least until my neuro there retires). Unfortunately its one of those big practices that are gobbling up all the smaller practices, so there aren't many neuros near me that I can actually see.

I'm probably better off anyway as my current neuro looked at the tests, accepted them at face value and just did her own strength testing to confirm the diagnosis. Plus she's an MG expert and her husband does MG research.

Quote:

Originally Posted by teresakoch (Post 907632)

First, the incidence of MG is 5/100,000, so there should be 15,000 patients diagnosed in the US.
Second, physicians are expected to be able to diagnose rare disease such as MG, mostly that every medical student learns about it extensively. (even though what is written in the medical text-books about this illness is very simplistic and far from what it really is).
In fact most physicians (or even medical students) would put MG very high in their list when presented with a patient with unilateral ptosis or changing muscle weakness. The problem is not that physicians don't think about it, but that they rapidly dismiss this thought.
In most cases it is not subtle. Patient go from being able to run to hardly being able to walk within weeks to months. Although, some patients may have a very mild form of this illness and possibly this can go unnoticed for many years.
Doctors (and even very good doctors) can make mistakes, but they can't and should not be allowed to humiliate their patients just because they don't know what is wrong with them; They can't and should not be allowed to cause patients lose their confidence in themselves; They can't and should not be allowed to jeopardize their patient's care by other physicians. If they don't know they should keep on thinking, keep on consulting others, keep on listening their patients for new and subtle clues. If they don't have time to do that, they should find another profession.

I recently attended a meeting of multiple myeloma patients (A disease as rare as MG, which may present with orthopedic complaints). This group of patients was not only concerned about the management of their illness, but also with improving the awareness of orthopedic surgeons to this disease. I never saw such kind of interest in MG patient groups.
There are studies which show that the chance for remission in MG is highly dependent on starting treatment within a year of the first symptoms. So, delaying the diagnosis and sending people to seek "psychiatric" help can lead to significantly decreasing their chances to be "by the book" and be able to lead a completely normal life.

Although, some patients will have respiratory symptoms as the first manifestation of the disease, for most those appear much later in its course. So, possibly starting treatment with relatively mild symptoms could prevent respiratory crises. Have you seen any study looking at that? I haven't.

The respiratory crisis of pneumonia belongs to history books. The respiratory crisis of myasthenia is unpredictable, not clearly defined and almost mystical.

It's very nice to have other patients with whom you can talk about. Yet, myasthenia is a serious and potentially life-threatening disease and it is much more important (in my opinion) to have a competent and knowledgeable physician to talk with.

When I see in the official MGFA clinical overview for health professionals that:

Quote:

Patients with myasthenia gravis come to the physician complaining of specific muscle weakness and not of generalized fatigue

The severity of weakness fluctuates during the day, usually being least severe in the morning and worse as the day progresses

The unusual distribution and fluctuating symptoms often suggests psychiatric disease.

probably MuSK antibodies virtually assures the diagnosis of myasthenia gravis

The measurement of jitter by SFEMG is the most sensitive clinical test of neuromuscular transmission and is abnormal in almost all patients with myasthenia gravis. A normal test in a weak muscle excludes the diagnosis of myasthenia gravis

I think of the next patient who is going to have atypical symptoms, a normal SFEMG (according to some studies this can be in up to half the patients with non-AchR MG). I think of how this patient is going to be dismissed, labeled as suffering from "emotional problems" until he/she has a respiratory crisis (which may also not be enough to convince the physicians that she is truly ill).

This has all been described in Chloe Atkin's book and has been the fate of many other patients who did not survive this ordeal. People who's life has been shattered not only by this illness (which one can learn to live with) but by those who were supposed to help.

Ways to improve diagnosis

Quote:

Originally Posted by alice md (Post 908163)

Why don't we all try to figure out a way to improve physician awareness, diagnosis of MG so hopefully others don't have to get to point of being so bad and perhaps in the process create methods, ways to improve our own treatment as well.

Quote:

Originally Posted by alice md (Post 908163)

I think of the next patient who is going to have atypical symptoms, a normal SFEMG (according to some studies this can be in up to half the patients with non-AchR MG).

Sorry for my last post, I realized I rambled a bit too much. Anyway, this is exactly what happened to me. They told me loneliness and depression can cause physical pain and symptoms of weakness. And I would tell them that the reason I'm lonely and depressed is that its hard to get out when you are in pain and can't move.

Then when they finally decided it was serious, they DX'd it as ankylosing spondylitis, which takes years to confirm as they need to compair x-rays taken each year. After about two years I started to realize I didn't fit AS, but with each new complaint the rheumitologist would say something like, "of course you have trouble keeping your eyes open, arthritis causes fatigue." It wasn't until I couldn't physically open my eyes that they started to realize it wasn't actually fatigue, but a muscle issue. And as previously mentioned, the neuro I was seeing was no help.

Quote:

Originally Posted by StephC (Post 908214)

Hi StephC

Hope you are having a good day. Those are great intentions :)

Internet

I think we all do our bit by writing here. I certainly know from personal experience that without the use of internet I would without any doubt not be having an upcoming referral for an SFEMG or been on a Mestinon trial. In fact it is very likely I would have continued to believe the doctor who insisted myasthenic muscle weakness was psychosomatic and the neurologist who said I needed to use my muscles a little more and everything would be just fine. Internet research has made me more daring to stand up for myself in the face of closed minded medical professionals. Do I think I will ever change their thinking? I´m certainly doing my bit and writing some kind but informative letters which probably won´t change any doctor´s dismissive attitude for the better - but at least I´ve actually done something.

MG Forums

Posting on forums is not my favorite way of communicating, nevertheless, every time anyone posts on an MG forum they are doing their little bit. I deliberately posted a while back about an unusual myasthenic reaction to sedatives, because I found no similar information on the internet (except with responses to antibiotics) and felt in a way it was my duty! Someone somewhere may be gathering valuable data from something on this or any other MG forum as we speak. Today´s medical students are younger – they know where to find the best information!

Media

Wasn´t it Sugarkiss who suggested a documentary? (it´s that kind of alternative thinking that is followed through that sometimes gets the biggest result – great idea Ms. Sugarkiss!) How about getting a Michael J Fox type figure on board? What about also including a broad focus on how this is so much a snowflake disease. Or a ´Myasthenic Mystery´ because it ´hides´ itself so cleverly.
At the moment, nothing is funny about having a serious disease but there are some comical elements which can lighten the information overload to the public and simultaneously but effortlessly draw in the docs and neuros to the cinemas!!! In fact on another forum a really nice man landed in the hospital with a breathing crisis, which is not funny, but the way he described how the doctors and nurses were flicking frantically through a manual to find out what they should do with a gasping myasthenic in the ER just by itself made me think of something for television. I do also know two people who are writing books about characters with other related diseases and the simple ideas behind them are really quite ingenious.

In my life at least, I´ve found that it´s exactly those times when you least think you are reaching someone that they have already changed precisely because of something you said or did that you thought was insignificant.

Quote:

Originally Posted by teresakoch (Post 895607)

You hit the nail on the head about "looking" just fine - it's hard for others to understand how sick we are, and there is absolutely no way to describe it in a way that those who don't have it can fully appreciate.

It's good that you have supportive parents - speaking as a mom, I know that they want to make sure that you are taken care of. You might be able to qualify for some government disability services, which might make it easier for you to get around. It's a tough call - being at home means that there will be someone around to keep an eye on you and make sure that you don't hit a crisis.

I think it must be harder to get this diagnosis when you are younger - you want to be able to get out and do everything that everyone else your age is doing, but your body betrays you. It sounds like you have a good attitude, and that is so important - :hug:

I apologize with being so late with the thank you but - thank you! I haven't been on this forum in awhile hehe :D