[minalhansen]

Hi All,

We are not new to this MG diagnosis. However, what we are new to is having doctors discount, disregard, and refuse to accept/treat the diagnosis.

Mycha was diagnosed with MG when she was 15 (she is now 22). From the time of her first REAL symptom (we know can see that there were symptoms prior), which was her left eye shut one day and didn't re-open for a long time, until the time her diagnosis came was only about six weeks. During those 6 weeks she went from a normal active teenage girl to being fully incapacitated to where she could no longer attend school, and I had to carry her everywhere.

When the diagnosis came we were relieved - we had a game plan, and everything worked. She received IVIG in preparation for her thymectomy, and then IVIG again after her thymectomy to aid in recovery.

Then for about 5 years she was well managed by prednisone (7.5 mg per day) and mestinon (180 mg per day).

Two years ago, our nightmare of not being believed began......

In 2012, Mycha had an exploratory laparoscopy to see if the source of some abdominal pain could be found. The doctor found some endometriosis and 2 iguanal hernias. The endometriosis was removed and she was scheduled for bilateral hernia repair.

However, waking up from this laparoscopy Mycha's blood pressure rapidly dropped, she could not breathe, she was in urine retention, etc. She was quickly admitted inpatient, stabalized with IV administered mestinon (I know it has a different name, but whatever), and then received IVIG. This is the LAST time she received appropriate care for her MG.

She recovered and walked out of the hospital 5 days later.

With this adverse response to the anesthesia and such, we felt empowered and armed to have a better outcome following her hernia repair, which was 3 or 4 months later. Alas, that was not to be. Once again, she woke up poorly, but this time instead of listening about the MG, the doctors diagnosed her with "conversion disorder" (even with new seropositive blood tests) and sent her to the physical rehab unit.

She did recover, but it took 6 weeks for her to walk out of the hospital. We do NOT attribute her recovery to the physical rehab but to: time, rest, and her body finally metabolizing the anesthesia out of it, combined with an increased dosage (20 mg per day) of prednisone.

Early 2013, her gall bladder had to be removed because it was found to be infected. This time coming out of the anesthesia, she coded and had to be intubated. Again, they did not attribute her weakness to MG (despite our repeated arguments/protestations to the doctors on her behalf). Called it conversion disorder and sent her to physical rehab.

Again, she did recover, but this time it took about 8 1/2 weeks in physical rehab and another increased dosage of prednisone (40 mg per day).

In November 2013, a glioma (brain tumor) was found. On 11/12/2013, she had surgery to remove the glioma. Her margins are clean and clear. She has not been home since November 2013. She has either been inpatient or in a skilled nursing facility. The insurance has now stopped paying because in their opinion this is not medically necessary becuase the doctors now for the third time in 2 years are refusing to accept her MG diagnosis and will not treat.

They raised her prenisone to 60 mg per day, and she is still essentially a quadrapeligic. We live in Utah, and the doctors doing this are at the University of Utah Med Center and Neurosciences Dept. They claim to be neuromuscular expercts, but even though again her antibodies are positive for MG because the EMG shows "normal" they will do nothing and are calling it conversion disorder.

We're looking at taking her to Duke or Johns Hopkins for evaluation.

I'm just at such a loss and so frustrated. Has anyone else had a similar experience? Has anyone been treated/evaluated at Duke or Johns Hopkins? Has anyone had to unravel misdiagnosis in a patient's medical records with insurance and the medical records?

Please provide me with any info you can. Also, because of the doctors' "diagnosis" of conversion disorder, we are having to do all this on our own without insurance until we can start to unravel some of it.

*edit*

If any of you have experience, with trying to get past the road block of doctor(s) who will not accept MG diagnosis and instead prefer to label it a psychiatric disorder, please respond with any suggestions you have about how I can help my daughter fight this and get the treatment she needs.

Thanks,
Mina **

[limpy]

I feel so bad for you and your daughter because I experienced being labeled conversion disorder, but only one time, not all the times you mentioned. My local neurologist did not believe this and had already tested me for Lems and it turned out positive after my experience. My bad experience was with Emory University in Atlanta. He referred me to Mayo in Florida, but they got the records from Emory and refused to treat me.
My local neuro did not give up on me, though. He referred me to University of Florida, where I got the treatment I needed.
I did not go there with anything except for what my local neuro sent, no records from Emory.
I have never had a diagnostic EMG, only antibodies and clinical symptoms, but I still got a diagnosis.
The only thing I can suggest is to start with a clean slate with someone who has some experience with mg and don't bring your history with you. That way their opinion will be unsullied by preconceived notions.

[southblues]

If she is seropositive, the diagnosis is made. What are they thinking?

I get so mad at doctors that don't know what they are doing. If all neurological conditions are psychosomatic, then shouldn't all the neurologists quit working and all of us go to psychiatrists?


I highly suspect that the doctors at Emory don't believe in MG. My sister has the same symptoms as I do.

I am being treated. She is just "crazy". I want her to go to my doctor. Sounds like they are the same way out in Utah.

I think some of us might consider these guys.........

[bny806]

I agree with that Limpy - I tried out a new Dr a few months ago, and made the mistake of bringing my huge medical record.. He actually said "I'm not going to figure this out, since no one else has been able to" UGH!! I was furious.. I mean no, you wont' figure anything out with that attitude.. Finding an open minded Dr that will think outside of the box is so difficult.. however with positive antibodies + symptoms, they sure shouldn't have to think very hard to figure that out! How frustrating!
I have been asked multiple times if I am feeling anxious... well yes, obviously.. people wouldn't be normal if they weren't anxious in this situation, however what they have a hard time seeing is that the anxiety is a RESULT of the mess, not the CAUSE! Hoping you find some answers and some get some help soon!

[minalhansen]

Yes SouthBlues - I thought being seropositive that we would NOT be experiencing this mess.
*edit*

Thanks,
Mina Hansen

[minalhansen]

BNY806,

um, ya when you are having difficulty breathing or moving that can make a person feel anxious. Ugh, but the fact that you feel anxious about it doesn't mean it's a psychological or psychiatric problem.....it's a PHYSICAL problem that is affecting your mental state.

I am hoping and praying "they sure shouldn't have to think very hard to figure that out!"

thanks so much,
Mina Hansen

[southblues]

It is possible that she could go to a good psychiatrist, let them find out that she is NOT crazy, and then the doctors would believe her. I would probably just find another neuro.

[minalhansen]

Originally Posted by southblues

It is possible that she could go to a good psychiatrist, let them find out that she is NOT crazy, and then the doctors would believe her. I would probably just find another neuro.

We are still looking to go out of state for evaluation, etc. BUT I wanted to update everyone.....

Yesterday, Mycha still was very weak. I had to carry her from the couch to the closet for her to pick clothes to wear. Today, at her sister's house (she stayed night there so someone could be with her), she (with assistance) walked from the couch to the bathroom. This is the first time she's walked in 3 months (no thanks to the doctors here). But praise God.

Thanks for info and support.
Mina

How awful. I do not have good advice, I do not live anywhere near you.
I do however want to say I too have had a doctor who said it wasn't the MG. I'm seropositive (and young female) too.
I went to another, and a little later another.

My EMG always turns out normal, even when I'm in a (near) crisis. It just is, I do not know why. But the neurolist I have now, says EMG can help if they're positive, and are useless if they're negative. It just means thát specific (group of) muscle(s) isn't affected at thát specific moment. Oh hurray, my thumb muscles are good...pity I can't walk, eat or breath....but who cares: the EMG is normal. It's all in my head.
Anyone can see that is not the way to handle this.

I truly hope your daughter will get the help she needs, and soon.

Anyway, apart from this, if it even ís a conversion disorder, that's a serious and awful disease too and should be treated as such.

[AnnieB3]

Hi, Mina. I am so sorry for all that your daughter, and you, have been through. I have the same level of disdain for "experts" who can't be objective about the obvious evidence of MG that Celeste has. Her suggestion about a psychiatrist ruling conversion disorder out is a good one.

Has your daughter been to see a neuro-ophthalmologist (N-O) or a pulmonologist? An N-O can assess any ptosis and double vision and show that it is indeed fatigable, which MG ptosis is.

A pulmonologist can assess the kind of breathing pattern she is having. Neurologists are the main MG doctors, as you know, but pulmonologists are essential to have to monitor how breathing is and to see patterns over time. There are specific tests that show neuromuscular fatigability. MIP (maximum inspiratory pressure and MEP (maximum expiratory pressure) show how well someone with MG is breathing in and out.

That would give you one more piece of evidence.

What is truly unbelievable about what they have said to you is that she doesn't have MG because of a negative EMG. First, if they only did a regular EMG, that might not be sensitive enough for MG. They can hardly call themselves experts if they didn't do a SFEMG.

Second, Prednisone's job is to make the signs of a disease go away. It suppresses the immune system that creates the antibodies! I realize that I'm stating the obvious that most everyone here knows, but sometimes it helps to refocus on the REALITY of MG and not on some concocted perception of conversion. An EMG would be normal after taking Prednisone or other immunosuppressants AND after taking Mestinon! That's not always the case but for them to not even acknowledge that possibility makes them appear very closed minded. And downright, well, stupid.

There are so many other things that can cause a normal EMG. And I wonder what her clinical exams have revealed. They often rate muscles on a scale of 5. For example, during my MG crisis, I had a 2/5 on most muscles. The lower the number, the weaker the muscle.

Do you have her medical records? It's amazing what some doctors do not tell you but actually write in their notes!

Many medical professionals, once they have "declared" something, have a hard time back peddling and admitting that they were wrong. That's not an excuse by any means! But they are even taught in medical school not to say they are sorry or wrong.

Have you thought about going to Mayo in Arizona? It's closer to you. It doesn't sound like your daughter can travel very far. And getting on a plane might make her worse. O2 saturation goes even lower in a plane, and she might have trouble breathing.

Another thing a pulmonologist can do is to do an overnight oximetry test. It's done while at home sleeping. It doesn't show apnea but it will show if she's getting enough oxygen while sleeping. It's a VERY important thing to do when an MGer isn't breathing well during the day. Muscles become weaker while we sleep. During my MG crisis, my O2 went down to 66%. Our bodies (brain, heart, and other tissues) don't do well without oxygen! They can even prescribe oxygen for a plane trip if her O2 is low.

Please see if she can get in to see a pulmonologist. They can also do an arterial blood gas, something someone with a "conversion disorder" can't "fake." Sometimes neurologists even dismiss pulmonary function tests, saying we don't give enough of an effort. Yeah, right. I know my normal MIP and MEP and it's obvious when I tank! That's yet another reason to know your baseline breathing numbers.

Also, taking photos of her face (head shot) and comparing to any photo that is similar (or take one when she is relatively better that is exactly the same as the bad one), will also give you more evidence of muscles being weak.

It's really sad that we have to go through all of these hoops when we feel so crappy. It's not our job to prove we are sick. It's the doctors' job. If they were experts, they would've referred you on to other specialists to help prove what is going on so that your daughter could be cared for!

I really hope Mycha gets the care she needs. She should not for one minute let what those doctors have said get to her. That's on them! She's lucky she has a great support system to help her out. Congrats on being such a great advocate for her. Work the system, and document everything!

Annie