Hi,

Im new to the forum so I apologise in advance if you have covered this ground before.

Im being bounced all over the place by the medical profession. Giving MG diagnosis, taking it away, giving diagnosis of cortical plasticity and no treatment other than lamotrigine which is making my hair fall out!

Those of you out there, is there anyone with a diagnosis of MG with the following criteria
Negative Blood Tests both the achr and Musk?
Negative SFEMG?
And open to interpretation Tensilon test? ( they said I didn't respond for long enough, it was captured on my phone and I reacted for over 3 minutes)
I do respond to Mestinon but Im getting weaker. I test myself daily to see how my strength is. I do the what I call the chicken wing test- sunday I could do 10, yesterday 8, today 4. I am struggling to type this.

So seronegative people how and where did you get the diagnosis?

I found this artcle but its only an abstract - which Angela Vincent was involved with that found that 56% of seronegative patients that they tested with SFEMG did not have "Jitter" - not positive. It was published in 2003, research was done in Japan.

[URL="http://jnnp.bmj.com/cgi/content/abstract/76/5/714"]

I dont know if I have posted this link right for the site so apologies in advance. Im not great with technology.

Thanks
Rach

hi i', relativly new and on timed relase mestinon but i wonder since it makes you feel better for awhile-do you then feel weaker when it wears off? so many unanswerable things to chronic illnesses!

Hi Rach, I'm also negative to both types Abs....the only thing determining my dx is the decremental repetitive EMG....on my 2nd visit, my neuro backpedaled cuz of the negative responses to antibodies...been getting worse & now he wants a cardiologist to do a treadmill stress test to demonstrate my exertional dypsnea. this will be on June 30th....(5 yrs ago in NJ, my cardio stopped my stress test cuz of "dypsnea", but he couldn't explain it & did not pursue it, cuz he said heart is ok!) I'll be darned if I know why these neuro guys have such a problem with spitting out a dx, they want everything in absolutes...medicine doesn't work that way......

The mestinon 180 timespan in the am. works for me, but wears off quickly, so I need it again in the pm..been using the 60mg if I have something I want to do at night....

You might want to print out Dr Vincent's article that was on this site & give it to your neuro..That's what I'm doing... (check out Annie B's post in thread: what happens at the NMJ level ..on this site)

Dottie.

Autoimmune illness is the worst because if you have one then most likely you have more {at least according to my Dr.} it is very hard for Dr's to pin point a DX I think it is because there is usually more than one illness going on at the same time. I hope you start feeling better soon.

Rach, Do you have the ACTUAL copies of all of your test results? If not, then you can't know for 100% certain that they were negative. Sorry, but been there, done that. Sometimes, doctors do not tell the whole truth and nothing but the truth.

I am really sorry you and your health are being kicked around. I can't remember, have you seen a neuro-ophthalmologist?

As far as the Tensilon Test goes, it doesn't matter how long the effect lasts!!! Tensilon last for only a few minutes. It's a very short-acting drug, which is why it is used for that test. It can be dangerous to use for longer and some people even have reactions in that brief amount of time. The only thing they should be looking for is IF it improved obvious weakness like ptosis or upper body weakness that they tested before, during and after the test.

I would guess that if it lasted an even shorter time than five minutes, that would indicate how BAD your MG is. Just like how some MGers can get by with Mestinon every four hours while some take it every two.

Is it the goal of these doctors to see how long you can suffer before they give in and help you? I think they've achieved that and then some.

The SFEMG being 98% positive in MG is BS that the neuros here have concocted. I've seen those studies elsewhere and they do not backup those statistics. And the SFEMG is highly dependent upon WHO is doing it. I would bet that if Dr. Howard or someone over here in the U.S. did it who has done it a lot, it would be positive.

Has anyone offered to do the Congenital Myasthenic Syndrome (CMS) blood tests? There are a couple of mutations very common to Northern Europe (Rapsyn for one). The tests are done by very few people. I believe Oxford is it in your area. France does them too, as does Germany.

Some of the people with CMS have too much acetylcholine while others - like in MG - have too little. They are not autoimmune diseases but genetic disorders causing those problems. My doctors aren't 100% sure if I have CMS, MG or both. Long story. Have you had symptoms since birth or only recently? Most of the CM syndromes are present since birth.

Did you ever contact Dr. Vincent? A very brief email with "please" and "thank you" would probably be more effective than too much info.

Maybe you should contact a news organization. Maybe these idiots would respond to public pressure!

I just hope you can get some solid answers. Again, get copies of ALL your test results if you don't have them already. Take it easy.

Annie



http://neuromuscular.wustl.edu/synmg.html

XMas, A lot of neuros don't prescribe Time-release Mestinon because the dosing is so inconsistent.

When you take a drug like that or regular Mestinon, yes, you do feel better on it and worse when it wears off. You may want to talk to your neurologist about taking the regular Mestinon more often.

Rach, I know you've been dealing with this awhile and may know when you get worse but I want to give you a caution. What you described about how now you can't even type is worrisome.

MG can get worse so slowly that you don't even realize that you are getting weaker. I think it was the movie Dante's Peak that I heard this analogy. If a frog is put in water and it is heated up slowly, it won't jump out when it gets scalding hot because it didn't even realize it was getting hotter. But when it gets dropped into scalding water, it will jump out. So, if you get weak all of a sudden, you may notice it but not if you get weak more slowly.

Anyway, just realize that breathing in MG can go downhill rather fast. If you are having signs of worsening, you need help right away. Have they ever done arterial blood gases on you?!!! When you are worse, have them do that. They can't argue with that blood test and say that you faked it or held your breath!!!

Rach, I am sero negative with dubious results on the single fiber (slightly below the minimal reading). Any way, neuro said something like, ' I hate it when the tests don't show they should...clinically you have MG. It's mild, but that's what you've got. '

Now this was my second neuro (the first one was more like what you are descibing) . It must have a lot to do with their experience level as to whether or not they feel comfortable stepping out with a diagnosis without pristine lab backups.

Keep trying to find the right doctor - - it's not easy, but it will be worth all the ups and downs once it happens.

Hi

Im going to answer the points as I remember them!

- No I dont have copies of the test results. Some were carried out where I live and others were carried out by the oxford lab.

- I haven't been tested for CMS but would like to be.

- I contacted Angela Vincent by letter last week, enclosing a disc with the video down loaded from my phone.

- Im going to be trying the National Hospital of Neurology next.

- I take between one and two tablets every four hours of Mestinon. Yes it makes a difference within an hour of me taking it and I can feel it wearing off depending how bad I am from 3 to four hours afterwards. It can make the difference between me shuffling to walking properly.

- At the moment I am struggling with weakness in my arms, to an extent which I have never had before. I can type this as I have just got out of bed. but my arms are shaking doing this.

- At present no problem with breathing.

Thanks for all your responses

Rach

Sorry I forgot one of your questions,

My neurologist is a neuro-opthamologist.

Great isn't it!

Rach