Oh Rach,
I am so sorry for everything you are going thru., I wish there was something I could say or do to help., I know you are a fighter., so please keep fighting, I know when it comes to Doctors it is hard to find a good one., I know I am waiting to August to get into one that specializes in MG, I had one neuro who was making me crazy with the side effects from meds were worse than my symptoms., so my GP is taking care of me till I go in August. But I am one of the very fortunate ones., My double vision is back with a vengence and i am fatigued easily but I consider myself very lucky when I read your post and others., please take care., and keep fighting, things will turn around., we are all behind you and think of you often.
Nancy:hug:

Hey Rach!
 

I keep reading about the "ice test" in different threads, and as I'm sitting in my cool little unit(thats cool as in cold not as in :cool: "Cool" :rolleyes:) I'm wondering how an ice test can improve, (even if only for a little while) your mg, while a cold house sends my fingers into "Nuh, I ain't going to work for you today" mode:confused: I know I know its just one of the wonders of mg, but still intruiging:D, or is that just me........

Hi Rach,

I am so sorry for all you have had to go through and still no answers.:( I don't understand why the tensillon & ice tests were not enough. It was a great idea to record them. I truly believe you will get some results after you email Dr. Vincent. You are a very strong person, so hang in there. Just know we are all pulling for you and are always here for you.;) Take care.

Hugs,
Pat

Hi,

Yet again I start a post with thank you.

Im feeling better today although my vision is a bit blurry and for some reason after 3 weeks my eye is open.

I still dont know what Im doing but its early days. I dont want to react before I have had time to calm down and sort my head out.

Is there anyone out there who knows about a tensilon test - what is the specified time that symptoms are supposed to be relieved? Before its classed as a positive result, any ideas.

I think as they saw me so bad in the hospital, they know how ill I can be.

As I said my head is whirling I dont know which way is up.

Thanks again

Love to all

Rach x

Everything You Feel Is Understandable
 

Hey Rach,

Don't feel bad about what you said. Personally, I think it's a natural response to say that life isn't worth living at times when life for us can be very, very difficult. They say that it's all the little mundane things that make life beautiful - a walk in the forest, a trip with the kids to the farmer's market, a giggle with a close friend over coffee. And a good portion of the time we're denied all those wonderful moments. We're stuck in bed or on the couch staring at the same four walls with the same tape running through our heads: why doesn't anybody believe me, what will happen to me, how will I make a living, this isn't what was supposed to happen, when will this end.

It takes enormous courage to get through what you are going through. It's awful enough having a chronic disease that is diagnosed and treated. Being in the bubble screaming with nobody listening is it's own kind of hell. Really, somebody needs to write a book, start an organization, start a forum for people like us who are just trying to find a diagnosis and need some kind of road map.

But you're still fighting the good fight and that's a wonderful sign. Think of all the people who must have given up who nobody hears from. Ouch. But you're in there, you're still seeking answers, standing up and saying what you need to say to your doctors. I think taking a video of your symptoms was genius! You know we have all these new ways of making ourselves heard and believed and understood - videos, the internet, printing out photo sheets. It takes some creativity to see how to use these tools and you're doing it. You're working it, baby!:D

Just keep telling yourself that you know you are sick. Period. Nobody knows how you feel except you and it's the height of absurdity, in my opinion for one human being to tell another that they know better how the other feels. Not possible! And we'd have to be drooling idiots to mistake a mental problem for a physical problem. Geez! Give me a break. I have a degree in psychology and I can tell you all that crap about women imagining illness came from a time when doctors thought all women were hysterical. And then Freud did a lot of harm to women with that nonsense and it's still causing us harm. As another example, lots of women came to him with stories of sexual abuse and he decided that they were all nuts, hysterical nuts. Well, he was wrong. It cracks me up that these know-it-all neurologists are still carting out these victorian ideas. Ya, maybe you need to be chaperoned everywhere you go too. And put that corset back on. And education will ruin a girl (probably that's why you're nuts :) ). And don't even think about voting. Puh-lease. :p

By the way, I looked up the ice and tensilon tests in a book I have on mg and it just said that a resolution of the ptosis was considered positive. There was no mention anywhere of length of time. Maybe you can find some articles that talk about that.


Hang in there, Rach. You're going to be knocked down again. And probably again. Just keep getting up, that's the key.

Ally

A tensilon test consists of an injection made under medical care, it relieves almost immediately the MG symptoms during of few minutes if positive.
It is done under medical care because sometimes an adverse reaction needs immediate attention (another injection).
Maurice.

Wow Do You Sound Like ME!!!!!! In all seriousness your experiences sound so much like my own its not even funny. All I can say is hang in there. After having issues for five years I finally got a positive antibody test!!! I did have an enlarged thymus(had thymectomy recently) and had the tinselon test, with a positive result. SFEMG, muscle biopsy, RNS, all antibody tests were negative for 5 years.

I had many a doctor say I was depressed or that I had pain conversion disorder. You can bet they all feel pretty sheepish now. I was dxed with fibromyalgia and as soon as I said I was dxed with that it was all over. They immediatly thought I was nuts too. So I stopped mentioning that. But now that I have a positive test they treat me totally different, which is nice but makes me mad they did not treat me this way before. I think the advice others gave you is excellent. You have to find the right doctor. It took me two years with my current neuro, so even when you find the right one it takes time. Unless you get lucky and get that one positive test result. Thats what I really hope you get soon. This is the perfect place to come and vent, ask advice and questions. So Welcome, and come back and keep sharing. Hope you feel better soon and I would keep taking that mestinon.

Rach, It sounds to me like these doctors are full of it. Cognitive plasticity?! Is that the best BS they could come up with? Just look up plasticity. Having good cognitive plasticity is a great goal but it's not a disease. The more "plastic" your brain is, the better off you are.

If you had obvious symptoms like ptosis that improved during the Tensilon test, then that is a positive test. My neuro tested my muscles before, during and after the test to see if they were weak, then improved, then weak again; which they were.

Do you have to be on death's door before you get help in the UK? It sounds like you are close anyway. I'm really worried about the damage those low O2 stats are doing to your body, especially when you're sleeping. What kind of "excuse" besides holding your breath can they give you?! You can't hold your breath while you are sleeping, so why don't they do an overnight oximetry study on you?

I'm sorry you are going through all this. It is horrid. I can't believe there aren't higher standards for medicine over there.

Annie

Myasthenic Syndrome - CMS
 

Hi Rach,
I'm sorry I haven't been around until now. I noticed you said 3 doctors mentioned myasthenic syndrome. There is a form of Myasthenia with this name that does the same things to you, but not because of autoimmune problems - it's hereditary - called Congenital Myasthenic Syndrome. Here is a link:

http://en.wikipedia.org/wiki/Congeni...henic_syndrome

Your parents don't have to have shown serious symptoms, you can inherit it because of one parent having a recessive gene. It may be what they were talking about, and since a form responds to acetylcholine but not other MG treatments, it may be worth checking out. Also, it's possible to have had very mild unnoticable symptoms as a child, which get worse later in life.

Best of luck to you. I sure hope you get help soon.

P.S. My positive Tensilon test lasted very few (long time ago, can't exactly remember) minutes as well - I was able to stand out of a chair without using my hands and walk a little bit. I'm sorry you are dealing with such seeming ignorance! Since you have i-net access, try googling some of these things and printing them out. That way, you can put the information in their face when necessary. Just make sure you are printing from a reputable site, like Mayo, Johns Hopkins, or Wikipedia. If it's printed from a forum, you're asking for even more scorn!