[MomYaYa]

I just don't even know where to start. My story is SUCH a long one that I haven't yet had the energy to start it on here!

I'll apologize now for the length of this post.

Basically, I've been journeying through this for 4 years. Various symptoms the first year that got me to a cardiologist etc. Finally after significant memory trouble (which I MAY now be able to attribute to what you all call 'brain fog') led me to a neurologist. He first thought I had seizures, or migraines. I WAS having seizures, but it was because of a medication I was on (Wellbutrin that I was given for what my GP thought was ADD) but after 3 EEG's and a 24 hour EEG it showed that they had stopped.
So at that point was when my, until then minor, muscle issues really became a problem. I started being unable to wash my hair because holding my arms up was impossible, I stopped being able to fold laundry, or scrub things because my arms just couldn't take it! I had been having vision problems with blurry vision in one eye at a time, swallowing problems, and then my legs started having a hard time with stamina. We had to live in a hotel for 3 months because of a flood in our home. After a very short time there, we had to move to the first floor because I couldn't get past the 7th step without major effort.
So he, at that time, sent me for an EMG. That EMG came back abnormal. The report reads "Needle EMG of some muscles showed changes of trains of positive waves" and something about "the elicited motor unit potentials were on the small side"

That led them to a muscle biopsy. At that point they were thinking Mitochondrial Myopathy, and apparently also MG (which I didn't realize until just getting the records). The muscle biopsy showed nothing, so they did a DNA test for Mito, which also showed nothing.

SO at that point, my doc was at a loss. This was now nearly 2.5 years with him. I asked him if he could send me elsewhere for another view. He sent me to UC Davis. I would have been happy, unitl I learned that that was where he did his residency. AND to make it worse, the neuro I was assigned to, worked WITH him his last year there. Everyone there knows him. I have NO issue with that as I love him and think he's a great doctor. The issue I have is that I wanted a NEW VIEW. Not a "Oh we know him, what did HE think" view.

SO, my first visit was 2 months ago. She ordered me to speech for a swallow test. (THAT was stupid because they have me swallow SOFT and LIQUID and I don't have much TROUBLE WITH THAT!!!!!!!! UGH!!!!!) And she orders bloodwork and a emg with repetitive nerve stimulation.

At teh emg there was something about decriments increasing but staying below 10%. The two doctors there were discussing it where the teaching doctor said that while 10% is considered an acceptable range, that really ANY decriment is abnormal and that I should go for a single fiber emg.

So my appointment was yesterday. This doctor in training was totally disinterested in my double vision, and started out by telling me that my emg was perfectly normal and ruled out MG. I said to her what the doctor had said and she looked down at the report and said "Oh! You're right! Okay we can do a single fiber emg." Then she carries on about how my labs came back and they did do the Musk antibody which was normal, but that the other labs showed I had been at some point exposed to the Epstien Barr virus and some coxsackie thing, and that she was considering Chronic Fatigue Syndrome. I told her that I had trouble with that as I did not feel that a) I fit into the description OF CFS and that b) my fatigue isn't my primary complaint, but that it's SECONDARY to my BODY percieving MINOR activities as extreme!!!!!!!

OMG I'm SOOOOOOOOOOOOOOOOOOOOO freaking frustrated!! I am giving up totally. I'll to the single fiber emg, but after that, I'm SO freaking done. I've had it. Blind **** doctors to things that I'm TELLING THEM that only want to move forward with the things that they are SO focused on in their own minds. Unable to see outside the scope of ANYTHING.

I'm sad, disheartened, and discouraged. I'm tired of being this way, and of seeking out help and not getting any. I guess I'm destined to suffer with this forever with no relief......

[AnnieB3]

I am very sorry that you have had a bad experience, again.

I think you need to take some time to gain perspective. Regroup, so to speak. I have been where you are and it is not fun but getting upset will not help you, at least around doctors. Scream, throw things or dance around your house naked - whatever helps.

First of all, you need copies of all of your records. That will give you something to do so that you can feel proactive. Get both test results and notes.

Have you seen a neuro-ophthalmologist? If not, go. They can assess any fatigable weakness you might have. Ask them to explain their findings - in writing.

Have you seen a pulmonologist? They can assess if you have any breathing difficulties and why. The breathing tests should include MIP and MEP. If they find that you have breathing difficulties, make sure they also do the "walk around the clinic" with an oximeter on. Even ask for an arterial blood gas if the doctor feels you have significant breathing issues.

You need to gather what evidence there is, get more and then concisely put it all together.

I am no expert on EMG's. I don't really feel good about putting those links here because I can't give you any conclusions. Well, maybe one. Chronic fatigue syndrome is a BS conclusion for someone to make so soon. Neuros are notorious for doing that, especially if you even say ONCE that you've been tired. Seriously, do all women on the planet have CFS?!!!

The SFEMG is far more sensitive and you should absolutely have it done!!! Wear yourself out completely for it! Make sure you are warm and hydrated. Studies show that women's muscles fatigue more slowly, so give them a head start. There are MG patients who test negative on SFEMG and still have MG. It may not be MG but they need to figure out what it is, not what it's NOT.

Neurology residents often act like they have something to prove . . . that they know everything and are smarter than you. They don't know everything yet and often act like they do. Ignore them.

Do yourself a favor. Write down every single symptom you are having. Look at your body from head to toe in a mirror. Yes, do it naked or with underwear on! There's a lot we miss because we don't LOOK. It is just muscle weakness? Do you have any pain? Any numbness or other sensory changes. Feel your muscles. Are there any areas that have less feeling?

I'm sure I've asked this but have you had your B12 checked and do you have the results?

Have you seen an endocrinologist to rule out any endocrine problems?

What I have found in my many years of doctoring H@!! is that doctors are very two-dimensional in their thinking. They gravitate to the simplest and most understood answers. They are wholly lacking in creativity and very few know the box is there, let alone know how to think outside of it.

The "train of positive waves," from what I gather, can be a completely normal finding. Small motor unit potentials, known as MUP or MUAP, can be indicative of lots of problems. That's why a thorough clinical exam is so important to diagnosing someone. Have you had a very thorough one, one that makes you so weak that you can hardly move? I've only had one and it was done by a very good neuro.

A family friend just got diagnosed with MG. She has probably had it for years. It was when she could hardly stand let alone walk and flopped back down in the chair that this perceptive neuro FINALLY ordered antibody tests and then a chest CT. The antibodies were positive. Doctors are no where near perfect. Why it takes we patients to be so persistent, while we don't feel well, for them to do their jobs well is beyond me.

Epstein Barr is not specifically related to any disease. Neither is the coxsackievirus. This is what Mayo does too. They look for these nonspecific viral infections of the past. The majority of people have had EB and other viruses. So what?

Please do NOT give up. Do not despair. I think the hardest part about this is not the time it takes or the bad "guesses" as to what is wrong but the doubt doctors have about patients and their eagerness to chalk every little symptom up to hypochondria. I frickin' hate it. It's not scientific and it's so defamatory.

Get your ducks in a row, do something nice for yourself and take time off to meditate and think. The big picture and answers may be there but they may be lost in all the frustration and the hard work you have had to do trying to get doctors to help you. I am really sorry for what you are going through. I still have PTSD from what I've been through, which is not my opinion but a clinical diagnosis.

Please let us know how things go, okay?


Annie


http://emedicine.medscape.com/article/215241-overview

http://emedicine.medscape.com/article/1832855-treatment

http://books.google.com/books?id=nAR...0waves&f=false

http://books.google.com/books?id=jp0...0waves&f=false

http://books.google.com/books?id=3cz...0waves&f=false

http://books.google.com/books?id=1sW...20muap&f=false

[Poetist]

It's just so hard to be okay.

Definitely get a CT Scan or a MRI of your chest. It was the only test that suggest possible MG for me, other than a failed portion of the Pulmonary Function Test.

Plus, I got a trial of Mestinon that is working with my breathing. Perhaps, you can stumble upon a doctor willing to give you a trial on it.

Regarding Epstein Bar:

This is quite interesting in regards to MG.

http://www.aan.com/elibrary/neurolog...01008050-00006

[AnnieB3]

Yes, Poetist, that is a good article. The problem is that they only studied people with MG. So many people have had EBV and not gotten MG. I do understand the importance of studying the effect of bacteria and viruses but, in the case of Kim, they are using it as a red herring.

[jana]

Kim, I've got to tell you that getting diagnosed with MG is a "crap shoot"!!

I was (praise God!) diagnosed with a positive AChR blood test more than five years ago. Since I look so "normal" (rolling eyes AGAIN, here) every new doc I see has insisted on running the test again. So, me -- THREE positive blood tests. I have PROFOUND clinical symptoms -- extreme difficulty talking, trouble swallowing, shortness of breath, neck and arm weakness, and intermittent double vision.

Recently, a routine neuro visit showed that the reflexes in my ankles were almost gone -- my neuro ordered my first EMG and RNS. During the RNS, I told the tech I couldn't lay flat on my back due to my MG. She didn't see my medical records and assumed that I was there for a diagnosis. After about a dozen zaps on my leg -- she asked me WHY I thought I had MG (in other words, she saw NO evidence). My legs are usually ok, strength-wise -- unless I am in exacerbation -- and I was NOT in exacerbation during the testing. My neuro did the EMG -- and I don't think he saw anything either.

So, I DEFINITELY HAVE MG -- but, apparently am negative on the EMG and RNS. Figure that one out!! THREE postive blood tests -- positive on blocking, binding, AND modulating antibodies -- I mean there is NO doubt that I have MG -- no doubt AT ALL!

So, just hang in there. Neuros talk about MG being the "most understood" of all of the autoimmunes. But, that is like saying the moon is the most understood of all of the planets -- LOL!!!

You really NEED to find an MG expert. I've got one -- and he is a saint. I've also got a regular neuro who knows an awful lot -- and who is willing to listen to the expert. (They did NOT go the same schools -- or are affiliated with the same hospitals. In fact, until my case, I don't even think they knew each other -- different cities.)

BUT, I went through a LOT of "frogs" before I found my "princes". Sad, but true. You will hear the SAME story over and over again in these forums. And, GREAT doctors are very, very busy. That is a "clue".

[Annie59]

MomYaYa, I cant believe it. These guys must have a blasted club. This is EXACTLY what I got from the pediatric neuro last week that has sent me down the tubes at the univerisity. She didnt even really examine me. She was so 'bothered' by the thought that I was asking for a fresh set of eyes. She sent 2 students in that MADE me talk all the history out tho my breathing and ability to talk and even think has been this awful recently. And of course after lunch when I had had my mestinon and saw her for the 'finale' I tried to but chronic fatig doesnt make it so I cant breathi well enough talk.......she responds of course "your talking now." If I wasnt in such a state of disbelief I would have come out of my chair and boxed her. My daughter said she had a fear that I would stop breathing. She said oh no that wouldnt happen. She was a total nightmare....... as on Elmstreet.

"Everyone there knows him. I have NO issue with that as I love him and think he's a great doctor. The issue I have is that I wanted a NEW VIEW. Not a "Oh we know him, what did HE think" view." I liked this statement in that this is what I need. I got that with my eye test that confirmed MG at a different clinic. But of course univeristy doesnt belieive it and since their clinic retested me months later when the myositis came on causing pain in my left eye and messed up the test it is considered negative by them till I can find a way to get an objective fresh opinion elsewhere. This is what my internist warmed of. She didnt want me to see the pediatric doc. But my daughter jumped in and said it was a hardship for our family to take me to Mayo or the like. I had to gently remind her that this was said when the appointment blew up. Internist knows there is just enough idiot docs in my records there that I am gonna have to go elsewhere for a fresh, untainted diagnosis. But that costs money I dont have. I am in the process of selling everything I can but you dont make much that way.

I also like how you stated that it isnt the fatigue its how the least activity feels EXTREME. Hope you dont mind if I use that. That is a very good way to put it.

Annie59

[bluesky]

My opinion: stay as far away from UC Davis as you can. That's all I'm going to say because this is an open public forum.

While you're at it, you might want to look through some of my old posts . . .

I had another mg patient on another site recommend a doctor in the bay area, I can look it up for you if you like. Of course, it's still a crap shoot! But if you like you can pm me. Or come to the Pacific Northwest! :^) My neuro's a goddess.

[MomYaYa]

Wow. I had hoped I'd find support here, but I had no idea how much support I'd find OR how much hell seems to bind us!!!!!!

To reply quickly to some questions (though ALL that was said I have heard and appreciate!!!)

No, I've not been to an MG Clinic. They are pretty far away as far as I know. I'd have NO clue how to get in. And how do they work with insurance? I am going to UC Davis which is SUPPOSED to have top notch MG docs, but I didn't get one of THEM, I got the freaking resident idiot! @@

I saw an ophthalmologist a couple years ago when the weird vision episodes started, but I don't think he's a NEURO ophthalmologist.

No to a pulmonologist. Thus far, the only time I have trouble breathing is when I get winded from, say, walking a lot, or too fast. Kind of like 'normal' people do with exertion. But nothing that seems out of control.

Did someone say something about b12? I had it checked somewhere at some point and it was fine.

I did ask the new neuro for a copy of the report of my last visit, and she gave me some bs about how she only gives a crappy summary. I WANTED it becuase my husband had been unable to go, and I wanted to make sure I didn't forget anything. At that exact point I made sure that I will ALWAYS just fax over a request for records after every visit. WHY she doesn't want me to have them, I don't know. But it tells me I need them that much more.

I'm going to do the same for my Sutter Records, SOME of which I do have. I'm fed the heck up.

There should be a forum with a list of GOOD doctors so we can all have that resource.

Thanks again everyone. I don't want to 'like' that you all have been through (or are still going through) this hell, but it sure feels nice to have ONE place where I'm actually understood, and that there are people who can relate.

God Bless!

Kim

[Poetist]

Momyaya,

If you have good records, you should fly down to Southern California. There's a clinic that will review your file and give you meds for free, but you better get Dr. Chui, who spent decades studying and diagnosing MG.

The other doc is younger and no good.