Rach, Many of us know that same feeling - when doctors treat you like you're fine when you're not, look at one disease out of thousands and say it's not that so it's not anything and then walk away as if that's acceptable professional medical behavior. It's not.

First of all, don't give up. I know you are worn out right now - I know that feeling all too well. So rest up, surround yourself with positive things and people and recover.

What they have done is to supposedly "rule out" MG. There are people with MG who don't have antibodies or a positive SFEMG. I know they love their alogrithms and gold standards but the truth is that not all patients fit so neatly into them.

They have not, however, ruled out CMS, at least from what you've said. CMS often has a negative SFEMG. At least that's what I've read and heard from the CMS expert at the University of California at UC Davis. But he's also a hypocrit who said he wouldn't see anyone who didn't have an outright positive EMG. He gave an interview, in their old "Pulse Scripts" that said they often have to go to the CMS blood tests and then, if necessary, the CMS specialized muscle biopsy (which is different and more dangerous than a "regular" one). Of course, he said that about children. I think they see we adults as dastardly, as if we don't deserve the same care.

Why they won't at least run the CMS blood tests is beyond me. Your clinical signs and symptoms point directly to a fatigable muscle disease. The list of diseases that cause fatigable weakness is very short!!! Did they even consider LEMS? What about a mitochondrial myopathy/cytopathy?

I think that their (UK) idea of health care is medieval. Instead of "Do no harm" it's "Do as little as possible."

So what can we do? How can we help? I know how raw you are right now and probably can't get past the swearing and alternating crying to even think straight let alone breathe well. But after you rest up, think about what can be done. Contact news organizations? TV shows? ALL TV medical shows?

I am sick that you are not getting help. If they take away your Mestinon, which has been proven to make you better, what the heck will you do? I'm scared for you.

Doctors do more harm to patients with their apathy, lack of diagnostic skills, lack of caring, lack of thinking and inability to get beyond prejudice than they ever do WITH their doctoring after being diagnosed.

I am simply so sorry, Rach.


Annie

Rach
I am soooo sorry to hear your news. I agree with everyone else that you should keep fighting even though you are devastated right now. I have not been in your predicament because my MG diagnosis was never questioned even though I am seronegative. All other tests confirmed my diagnosis as well as my symptoms. I just don't understand how one doctor can say you have MG and then another say you don't. That has to be very, very frustrating.

You are in my thoughts and I pray that you will be able to get your diagnosis one way or another.

Big Hugs

Shari

I wrote this for you, Rach (a little bit is from my book). Hope you like it.

That's my pen name, BTW, Annie Gray. First time I've made that public. That's how ticked off I am. And sad for you.

Some of you guys may not like this, since it's a full out attack on doctoring. It's satire and is done so to prove a point, however, not to generalize about an entire profession.

Annie

Rach neuro sxs for years here and no dx of anything really either... sorry you keep getting info then knocked off the info.. hugss,sarah

I didn't find Annie's writing too harsh.

I really do NOT understand why it seems that neurology attracts so many "undesirables". I don't hear many complaints about, say, ob/gyns OR orthopedists OR pediatricians OR GPs OR dermatologists OR cardiologists OR pulmonologists OR oncologists. I mean, REALLY, neurologists are the ones we, and most other people, seem to "butt" heads with. Again, I've found TWO I love -- out of 8 or 9 (lost count). For me to say that 25% of the neuros that I've encountered are good -- well, that's not exactly something you want to brag about, is it??

Rach, Here is the "Pulse Scripts" from the University of California at Davis describing CMS. Interesting that they do blood tests in children. Don't adults deserve the same care?

Jana, I sort of have a "theory" about that. It's possible that the field of neurology attracts "controlling" personalities. Many of them start out as psychiatrists. They may have the elitist view that, since they know most about the brain and nervous system, they know more than other doctors. I didn't know what being a "control freak" was until a couple weeks ago when I looked it up. I hate using that term since it's rather offensive but I couldn't really find an alternative other than controlling personality (I'll use CP's from here on).

Needing to control others isn't about power, as I initially thought. It's about insecurity, perfectionism and the need to be right. They literally cannot handle being wrong. Or being shown they're wrong. It would collapse them. Seriously. They need to be perfect.

Another thing about CP's is that they do what's called "leveling" of those around them. Didn't know that either until my psychologist let me in on it. They see people who are confident and it initially attracts them. Then they feel insecure and need to bring the person down by putting them down. That makes them feel better and so they come up and the other person goes down, therefore "leveling" them.

And if the other person tends to be the kind of person who can't or won't be controlled, they beat up on them even more. Sound familiar? Abuse is abuse. Whether that is emotional, mental or physical abuse. My interactions with a couple of past bosses now make sense to me.

Or maybe neurologists have some other illogical reason for being not so very kind or thorough. Anyone else have any ideas? Does it matter? I know some good ones too but it's been about the same percentage of bad. Are they really proud of that? And I should say that I know a bunch of really great doctors in other specialties too.

I dunno, Rach you're in a tough spot and I feel completely powerless to help you.

Annie

Attached Files

congenital_myasthenia.pdf (53.5 KB, 155 views)

Firstly a big thank you to everybody for your kind posts. I'm not in a wonderful place right now so I'm finding it very difficult to communicate. I feel like Ive just shut down emotionally and physically. I've put up with a lot of **** in the last three years, but Ive truly had enough this time.

I'm exhausted and I need some time to think and work out what I need to do next.

I can't do anthing until I get this report, I also need to write to the neuro opthalmologist who saw me who said that there were issues with my eyes and see what he thinks.

It aint over yet. I may have lost this battle and a few prior LOL! but I will eventually win the war.

I have a blog called

http://themyastheniakid.blogspot.com/

which for those of you who are new or those of you who don't really know me can see how very hard I have fought for the last three years.

In a very quick response to some issues raised:

CMS- the national centre of excellence, Oxford, won't test me for it. Its the only place in the UK where it is done. I agree it needs done but my hands are tied.

France- wanted me to see Oxford, they work together. Yes Europe really is that small LOL! So France is no longer an option.

Angela Vincent - A really lovely lady and have had correspondence with her , but she's a scientist not a Dr. So she cannot help me.

TA - thanks for the link but I have no headaches and it doesn't explain all the other symptoms. But great suggestion, we are looking at the possibility of Lymes disease as I could have been exposed to it.

I don't mean to sound glib or ungrateful as truly I'm not. I just feel so utterly helpless in all of this. Please keep your suggestions coming it might eventually lead to something.

Thanks for your support

Rach

Rach, I've read your blog MANY times -- it has shown up on my Google alert. I had no idea it was YOU!!

A positive Tensilon AND a positive ice test. This guy is NUTS!!!! I wish you could get over here (to the States) to one of our "good" docs!! Or..............I wonder if that video could be sent to one of OUR docs...........hmmmmmmmmmmmmm.

Annie, you explained soooooooo much about what I believe happened to me at the "big ten" teaching hospital. I butted heads with just about all of the neuros. And if the other person tends to be the kind of person who can't or won't be controlled, they beat up on them even more. On more than one occasion, I left the place crying -- and that is so NOT like me.

Hi Jana,

it is I the mysathenia kid! Thank you for reading my blog! Ive no idea how many followers it has, as the counter is rubbish! I wish I could post more regularly but at the moment most of the time I'm just not up to it.

I could possibly have had two positive tensilon tests as I'm only guessing on the second one that the 2nd injection was tensilon. The first was classed as negative /inconclusive as I didn't react for long enough. The fact that I wanted to scream "BUT I REACTED" when I was faced with that one.

Thanks again for reading my blog. I'm hoping the more people read it the more people will be aware of the plight of people who live without a diagnosis, of any disease.

Love
Rach

Rach,

I am just sick to my stomach for you.

I know exactly where you are - that awful dark, paralyzed, hopeless feeling. Nightmares aren't this bad.

Here is the one fact that we know absolutely for sure: You Are Sick. There is evidence inside your body. Maybe the right test has been discovered, maybe it hasn't. But that's not your fault. If a test is negative and you're sick - then it's the wrong test. This is a basic, simple fact that the medical community seems entirely unaware of.

So either the disease can be proven or it can't be proven. Sometimes I think we undiagnosed people would have been much better off before modern medicine because people were just sick. There didn't have to be an explanation. Now we feel dismissed, sneered at, all alone if there's no explanation.

Here's the thing: it can't be proven when all the doctors shrug their shoulders and walk away. And that doesn't just happen in your country: I've been to almost 40 doctors and despite obvious, visual sypmtoms I have yet to find someone willing to dig.

First, take care of yourself: curl up, whimper, keep breathing. Your job at this point is to get through each moment one by one by one. I know it feels like this is the end of all hope but it's not. Stop thinking for a while. Really, I mean that. Thinking at this point is just like getting on the Hopeless Train and riding it into h***. Try to distract yourself with anything that works. Let your mind absorb this slowly.

You and I have kept in touch and you know where I'm at at this point - almost. I haven't heard back from my doc either. But I'll tell you sort of overall what I've been going through the last few days because I think it might help you. As you know the last neuro mentioned a horrible disease. Well, the symptoms don't really fit. But - in trying to research that I came across a video of a neurological symptom and I looked to see if my muscles did that too - and sure enough, yes it does. This is turning out to be a big, huge clue. After 8 years maybe my biggest one. I'm being really vague here because I don't want this on the internet - but I'm going to email you the details. Well, I went through several hellish days because one kind of this disease can be fatal, can be totally debilitating, worst of all it can be hereditary. I sort of lived with that for a few days and then my head came up above the water and now I really believe that if I do have this problem it's not the worst one. And actually, maybe this is my road to getting some help.

My point is that in the last couple of weeks, going through all this I've been astonished at how many disease have overlapping symptoms - many the same ones as mg. I'm not saying that you don't have mg! I'm just saying that I don't understand why the docs say (to you and to me) "you don't have mg" and then just walk away.

I think Annie's right. I think you need a fresh start. I think you shouldn't give up hope either. Start again. See what the report says. List all your symptoms. Send them to me and to others here. Maybe it will ring a bell with someone. The symptom I have discovered, well it boggles my mind that nobody had discovered it before. It boggles my mind that not one neurologist had ever mentioned this group of diseases as a possibility. Even if it turns out that this is not what I have - my symptoms fit so well it should have been brought up as a possibility. Okay, I am going to generalize here, and this doesn't apply to all neurologists and certainly not (I think) to the last one I saw but: these guys are very concrete thinkers and I swear they don't have ideas. They cannot pull things together and make diagnoses. They just are not cognitively set up to do that. They memorize short lists of symptoms that must match exactly - and then they forget the little boxes and they're too narcissistic to realize they've lost their knowledge and then they have no tools at all to diagnose. Add to that the fact, as Annie said, that they can't stand to be wrong - literally, psychologically are incapable of being wrong and therefore extremely reluctant to give a diagnosis even if they have any ideas and, well, the patient is in a tough spot. You're going to have to do this on your own. That's the bad news but the good news is that this is not the end of the road for you.

I know that you're also in a difficult position because you need referrals and permission to see specialists. I'm sort of at the opposite end: I can see anyone I want according to my insurance but they still ask for referrals and right now I have an extremely uncooperative gp (who after 8 years of horrific symptoms still doesn't get how sick I am). My biggest problem though is that I'm paying over $1000 a month right now for insurance plus another $4000 out of pocket per year and I can only hold out for a few more months. So in my view neither system is working for us. And I do think that a great many of us end up dying, or committing suicide or in some way just crawling away and in that way are no longer problems for "the system". I do think though that if you keep making noise and keep persisting, somehow some way you're going to get a breakthrough. You don't have an end date on your coverage, you have unresponsive coverage. But at least that buys you some more time.

Okay, I'm going to email you now with my details. Please try to hang in there! Know that we're all thinking of you.

Lots and lots of hugs,

Ally