MG-'expert' neuro says I don't have MG... but another bread crumb....
 

So I saw the much anticipated MG-expert neuro that local MG'ers have raved about. In my opinion, the guy wasn't the expert I'd been led to believe (although he sees 50-60 MG patients). He told me point-blank MG doesn't cause urinary incontinence, never has pain associated, said that everybody responds to Tensilon (himself & my friend included),... I didn't dare object since I'd be provoking the bear. He wasn't interested in dialogue, cutting me off & demanding brief 'yes' 'no' responses. He laughed at me when I said I've had symptoms periodically since I was a kid, saying, "You have not had MG all your life!" The guy was a jackbutt.

He didn't do an extended muscle fatigability test either. His version lasted under 5 minutes & included checking arm & neck strength, following his finger, rocking once forward then back on toes/heels,... He did sustain the counter pressure for longer than I've experienced with other doctors, and he was much more demanding that I apply every ounce of strength. As a result, I didn't experience the 30-minute delayed 'blue ball muscle fatigability' I've described in another thread. In fact,.. I seemed to gain some of my strength, and even my breathing got easier. This I was not expecting... it didn't last too too long, I'm back on oxygen tonight.

I'm now suspecting that this could be Lambert-Eaton Myasthenic Syndrome (LEMS) rather than MG (keeping in mind I respond to both Mestinon & Tensilon). Also associated with LEMS is postural hypotension which would explain the wide range of blood pressure readings in a short time period (142/99 to 103/31) and corresponding breathing difficulties (especially lying down -- feels like I'm being strangled).

A doctor at the hospital the other day already ran the LEMS-associated VGCC antibody test so I'm waiting on the results. Also, the autoimmune variation of LEMS is associated with the same HLA subtype (HLA-DR3-B8) connected to Autoimmune Polyglandular Syndrome (which I have).

Today's neuro is having me come back Feb 18 for a repetitive stimulation test. Hopefully, that will indicate if this is LEMS. In the meantime, I'll keep my theories away from the doctor's ears since he appears openly hostile to my input. Whatever happens, this guy won't be my permanent neuro. I don't feel the need to pay money for abuse.

In the meantime, I'm terrified of an approaching weakness backlash from having strained so hard today. Breathing is already so compromised and I have felt the depths of the depths of the depths of muscle weakness to the point of near paralysis (moved one finger on keyboard to communicate). I've got a pulmo appt on Thursday so maybe they can get me more answers & help.

What a load of CR:mad:P!

And now where have I heard all THAT before....Those EXACT words and that EXACT manner??
(Except the word used in my case was Mestinon as opposed to Tensilon)

You so deserve that good neuro and need one

We have to invent a new test if we can´t change neanderthal attitudes
(I´m sure they would have sensed and accepted it faster than your neuro)

Hoping for your SFEMG to be positive :cool:

:smileypray::smileypray::smileypray:

PS Good advice about no letters from the more experienced ones - keep writing for your own records for time being

Thanks, Anacrusis. :o I'm a little nervous about it but hopeful.

If I understand correctly, I stand a higher chance of SFEMG registering outside the normal range if I have LEMS vs MG. That's helpful for two reasons:

1) The MG-'expert' neuro said Mestinon does not stay in the system to affect SFEMG results so I shouldn't be off it for more than 24 hours (contradictory to the research study in PubMed(?) indicating Mestinon can affect SFEMG results up to 2 weeks after going off the medication).

2) The neuro's not testing around my eye, he's testing on my arm and/or leg. Per Annie, "Subcutaneous fat of 9 mm (millimeters) can reduce an EMG signal by 80%." I've gained weight this year so I'm not thin. Will my fat do me in? We will see.

But I do have two prospects,.. the VGCC antibody test as well as the upcoming SFEMG. Hopefully, one or the other (or both!) will work out....

A well-hidden tape recorder might've been appropriate. :mad:

Seishin, I honestly can't even handle this tonight. I know how you feel. This mistreatment - and UNSCIENTIFIC conclusions - has got to stop.

Pain: A marathon runner's legs fatigue after 25 miles. An MGer's simply fatigue more quickly.

Mestinon/Tensilon working on everyone: Well, no. They would still have side effects or adverse effects of the drugs.

Urinary Incontinence: MG can affect any of the 640 skeletal muscles. One cause of UI is weak muscles.

Need I go on?

He was a controlling jerk. And what you have to know about controlling personalities is that they are essentially insecure. That's right. They can't handle not being right. Ever. Why? It might make them literally fall apart.

Take someone with you to the Pulmy appt. Like a bodyguard. ;) This is horrid to contemplate but, at this point, you need evidence of their unwillingness to help you. And if you haven't gotten ALL of your records from the past couple of months, get them.

I'm so sorry. I'm livid on your behalf.

And what were you just saying, Alice, about doctors being menches? Not in this case.

:grouphug:
Annie

Hi there, just to "reassure" you: I really do have MG (I have positive anti achr ánd anti musk, positive EMG and sfEMG, thymushyperplasia and more obvious stuff). I do not however have clear textbook MG.
I do have pain in the muscles (if you're not up to paralizing weakness, still use your muscles, but they get tired very easily, for me it always feels like exercising too much, a.k.a. musclepain).
I did not have a positive reaction on Tensilon.

And, I've also been to the "professor specialist of specialist, god of MG" where I lived. Most of his patients told me to, so I tried.
But it was a failure.

I'm not sure, but I think the urinairy problema can be caused by mg. Directly because the pelvic diaphragm could get weak (I'm not sure if these muscles are involved though!), or indirectly because of medicine, like mestinon is known for it.

So, well, hang in there. There is no such thing as one MG patient. Everyone has different weird stuff. :hug:

Thanks, Annie. :o

At least this time, I didn't let the neuro's behavior overwhelm me or cause too much self-doubt. I feel more confidence in my knowledge (thanks so much to this board!), so it's easier to recognize the neuro's flat-out wrong & being a dink. Usually, I'd go home & cry after the flailing. This time, I complained afterwards but it didn't knock me flat or cause me to question my psyche.

Although this does aggravate financial concerns. Still no income & not able to work. I'd hoped to file the appeal in response to the short-term disability denial, but that has to be placed on the backburner until I have more 'evidence' of an 'actual' health problem. According to test results, I'm not even supposed to have oxygen (the primary physician caved & gave me a one-week prescription to pay out-of-pocket). On paper, I'm just documented as having neck weakness & 'complaining of shortness of breath & generalized muscle weakness' ... not enough to keep me from working. So I'm fine, unless one jumps into my skin for a day to experience what 'fine' feels like....

Thanks, Ravenclaw :o

I feel pretty confident in the information I presented, so the extent of his 'wrongness' shone through for me. Whether to bother pointing out his error,.. that was the question. He was not of the personality to hear other viewpoints or logic. So I became semi-docile (not like me at ALL!!) and made puppy dog eyes at not getting this diagnosed and treated.

What I start to wonder is this.....

If it can take a number of years to get a diagnosis,

How many more years on top of that does it take people to find a good neuro IF they are seronegative?

Hang in there sweet Seishin this has to work out for you one way or another :hug:

Yeah... I wish that 3rd year resident neuro were opening a private practice. He was very compassionate & willing to listen. That's what I want. The neuro wouldn't have to be a know-it-all expert, just demonstrate a willingness to learn, take the time to hear me & work WITH me.

Okay....:Zzzz:

Ha! The one I would have chosen would have been the one who lived in another country approx 2,000 km away from my house.

His interest was researching seronegative MG and when I asked if he thought the symptoms were psychosomatic, his response was :Noooo:
And he even spent time explaining why he thought the contrary :holysheep:

Sleep well you need at least that much :o

Forgive me for saying this, but are you sure you have myasthenia?

I am not suggesting that your symptoms are caused by "emotional problems", but by some other medical problem which they may be missing because you are so convinced of having MG.

I may be wrong, but it seems to me that you come to your physicians telling them that you know what your illness is and you know better than them what tests have to be done and how they should diagnose it.

You create for them a very easy yes and no situation- MG or not MG.

It is true that MG is many times not an easy to diagnose disease and patients with MG are sometimes not diagnosed properly for many years. But, this does not mean that every patient who has an unusual and hard to diagnose illness has MG.

Why not take a different approach. consult a good non-specialist well-rounded neurologist. Some one who is interested in thinking what your illness is and has a broad/open-minded thinking.

You mention that your illness started at an early age, you have some abnormal blood tests which do not fit with MG, you describe breathing difficulties with relatively normal respiratory tests. Someone has to put all this together and not just say if you do or do not have MG, but what illness you do have causing this.

I just noticed that you mentioned having Polyglandular autoimmune syndrome. Which type? Are you being followed by a good endocrinologist?

Hi Alice,

I definitely see your point. I've already repeatedly encountered the framed Yes vs No response to whether I have MG. It's happened where they forego testing & base their 'diagnosis' on my appearance or testing is done incorrectly, which leads to comments like,"You don't have MG, you're fine so you should be happy."

I'm not sure at all whether this is MG (or LEMS). Since they're highly suspect (especially due to the Polyglandular Autoimmune Syndrome and responses to Mestinon & Tensilon), I want the neuro to eliminate them as possibilities before searching for answers under other unturned stones or falling back onto the psychosomatic sword. As we've discussed on the boards, faulty testing methodology leads to faulty test results, so if they're going to eliminate MG as a possibility, I want to make sure they adhere to testing for it in a way to pick up on positive results if they're there.

I mentioned to Anacrusis earlier in the thread that I really want a neurologist who excels at communication & is engaged in helping me find answers. I would love to find a neurologist like that & work with them. I'm not married to the idea of having MG or LEMS. My primary focus is to get this identified & treated so I can hopefully start feeling better.

So we'll see where this lands.

Alice, I don't yet have an endocrinologist. I first had chronic hives 13 years ago (head to toe, 3-4 times a day for nine months), it's in remission. I developed vitiligo around the same time, mild until deciding to make its appearance more prominent about four years ago. The Hashimoto's Thyroiditis was diagnosed this spring (2012). Only when researching the cropped up mystery symptoms of ptosis, generalized weakness, etc did I come across rare disease info stating chronic urticaria + vitiligo + Hashimoto's = PAS Type 3C. (Note, my mom also had PAS.)

All I need is to go to a doctor saying I predict a diagnosis of MG, and I self-labeled PAS while I was at it based on cyber research. There's no way I would be heard or escape a label of cyberchondriac. So I've put the PAS on the back burner while I search out a neuro. Then, I deal with getting an endocrinologist and finding if there are other glandular failures & whether adrenals are involved to make it not Type 3C. Then, I deal with my teeth (I still have three loosened crowns & loosened teeth from when all these symptoms started this fall.) And hopefully, before all of that, I'll have figured a way to get more pennies in my pocketbook. My Flex spending and ex-boyfriend presently are keeping me afloat.

I personally think you should go to an endocrinologist.

First, endocrinologists are internists. So, they don't go so easily into the DSM route and are less focused on one system.

Second, You already have a proven endocrine disorder and a family history of one. So, it makes perfect sense to consult an endo.

BTW, it was an endocrinologist who first thought I have MG. He put together my recently diagnosed " asthma", my significant weight loss and the mild difficulties I started having in climbing steps and doing more strenuous activities I could easily do before. He thought the mildly abnormal thyroid test results I consulted him for were not significant and did not explain any of my symptoms.

Alright, I'm sold. I hate to put another ball in the air, but this MG/LEMS/mystery ailment diagnosis has dragged out longer than anticipated.

I'll start researching endocrinologists today. Thanks for the guidance.

I'm really sorry to hear that he was a jackbutt :mad: One of the most discouraging things out there. I've had a few. Even my neuromuscular dr that I see, (and is my #1 guy we go to), when I first met him, I wasn't sure about him either. He was very "yes, no" answers type of guy, wanted to know when every thing started at the exact date, exact time. He didn't come off very friendly at first, and my family and I (my parents were with me) weren't sure what to make of him after that visit. The 2nd visit came, and he was a bit warmer, but he seems to like me a bit because I am young and an interesting patient (being 26, having these symptoms etc and he mostly works with elderly ALS patients), and because we found a similar interest between each other so there's kinda something else to talk about.


We did go in there saying that we had very strong feelings that it was MG, but we also had reference from the local neurologist to back that up our pre-diagnoses.


Hope you find another one who's a bit more personable :hug:

Ah, sometimes I think most of them (neurologists) are just kind of "funny".
I've seen many, many specialist. I've been to at least one doc every specialism.
And well, not to generalize of course, but they just always seem to be a bit strange in their contact wit patients, kind of like they lack some kind of social skills.
This is just my experience, but my reumatologists never say: "oh you look all bloated" and make a sound to indicate my moonface "PFFFRRRT" when I show myself after starting prednisone. My haematologist or endocrinologist accept that I'm not just a random patient who lies there and waits for god-in-white-coat-almighty to do something, but that I want to be involved. Two neurologists talking about me, and use stuff like "globulines" and "melanoma" smile and say "Just look the other way, we're talking difficult stuff here. It's jibberish for you".

Not to generalize, there must be some non autistic out there.

Good luck with an enocrinologist! I know the best, he is fantastic, my best doc ever. He's not in the US though, sorry.

Ravenclaw, do you have LEMS?

We've got a holistic pharmacy in town, so I reached out to them for a list of alternative-minded MD's with various specialities. I'm going to try my luck with a neurologist from that list. In my experience, the alternative-minded doctors often will have a better bedside manner, be more communicative and take more time explaining things. We'll see how it goes,.. the neurologist I chose from the list gets excellent online reviews from his patients. Fingers crossed I can see him within a reasonable time period.

I'm not as impressed by the endocrinologists on the pharmacy's list but I set an appointment with one that's hopefully promising. If I don't have luck, maybe I'll fly to where you are and visit yours. I'm overdue for a vacation. Can I leave my body behind? :Wave-Hello:

You know I think you may be onto something with the POTS/dysautonomia. I have that as well and it can be VERY debilitating, AND mestinon is the treatment for it, so you would feel better with mestinon! Your breathing symptoms and chest pain actually do sound a lot like my dysautonomia symptoms...and I have it as part of small fiber neuropathy, which causes me a lot of loss of feeling in my fingers, and feet as well. It makes me off balance. It's very hard to walk up stairs without being out of breath and getting bad chest pain if I haven't taken mestinon, but it's the dysautonomia causing that part, not the MG. The symptoms are different. I'd make an appt for a tilt table test and autonomic workup. POTS can be very, very incapacitating.

This frustrates me as a healthcare provider! Sometimes the "experts" get clouded with the "patient load" and overlook the human sitting in front of them that is in desperate need of answers!! I'm so sorry that you were treated this way and pray that you will soon find answers to your illness.
Side note- You can actually report this MD to the Board of Neurologist in your state.
B