my neuro did one test. I asked if I could have it redone to see if the antibodies are gone.......he said it doesn't matter...if I have it I have it.

Wouldn't low antibodies be like.....
a low level of cancer
or low level of MS or basically low level of anything that disrupts the body.

I was told essentially the same thing as you , Ann..What you have is what you have , you can't give it back.

I have tried on several occasions with now two different neuros to get a different diagnosis and they wont hear of it. I feel for you though, that they wont land on something firm and get on with the treatment already... I had to switch to a MG specialist to get good treatment, i am sure you are all over that... but if the CT scan shows thymus issues, that will lead you down yet another path.. keep going girl... you will get the answers....

M

I just got online to check on you!

My neuro gave me a clinical DX, but my GP kept pushing for a solid DX. Thankfully, I (barely) showed MG on my SFEMG. At first my neuro was sure that I had MG from his experience and then he wanted to change my DX because of my GP's persistence.

Hang in there, Sweetie!

Barbel

I'm glad you brought this up--I have been wondering the same thing. I'm double seronegative, but I show constant low when tested. I don't know if that's a margin or error or if there are in fact *some* levels of AChR floating around my system.

Thanks everyone....I really hope things change soon, ideally it would be great for a test to back up the diagnosis but in reality, I just want to feel better and hope for treatment...scary as they can be!

Seattle, it's interesting you have the same thing! It's nice to know I'm not alone!! I've googled this but found nothing - has Anyone seen any research or papers on this?? Or asked a Neurologist?? I would be really interested in anything anyone might be able to offer on this? x

Well, I understand your frustration. I've posted on this before as well. The normal range for the last test I had through Mayo is 0-.02. I am at a .14. Doctors have made the comment that that number is still low (which translates that they aren't sure I have it). I've tested positive every time with a low but abnormal result and physicians, including Mayo, question it. The doctor at Mayo even said sometimes people test positive for things and don't have it, which really made me laugh her off and want me to tell her to keep practicing medicine because that's essentially what they do. I started with slurred speech. I now have extreme fatigue, legs give out, and trouble lifting my arms for a long period of time. I don't seem to recover that much with sleep either. Mestinon is not a wonder drug for me like it is for others. I don't take anything, I just deal with things the best I can. Since then, I've had doctors at University of Florida and Univeristy of Miami say that some tests I have done ( for eye movement issues and movement disorder) are due to my MG. Another local neuro told me I must only have the ocular form because I didn't have a positive SFEMG, which I've only had once, not twice like I reported last year. Mayo did a regualr EMG and Nerve Conductive Study over the summer which was fine according to them. It really depends on who I talk to and see at this point. I just keep all medical records and diagnostic evidence in a neat binder because at the end of the day, that's what doctor's mainly care about. I also want to have strong medical evidence that suggests I have issues in the event that I have to ever go on disability because my attorney will be proving my case, not my physician. Good luck, I'm sorry that you have to go though it.

I just wanted to call attention to the front page of the Myasthenia Foundation of America.

http://www.myasthenia.org/WhatisMG/TestDiagnosticmethods.aspx

They clearly state that there are people with myasthenia who are negative to all tests. This is a fact.

There are a few other conditions that look a lot like myasthenia but a doctor with career long experience in myasthenia gravis and similar muscle problems should be able to make this determination.

The problem most of us have along our journeys is dealing with doctors who do not have the experience or knowledge to have the confidence to call MG MG when they see it if it is not the classic text book presentation in testing. The ones that have the experience and sense it is one of the related causes of symptoms will check those out. It is easier for the inexperienced doctor to call MG just that if your test is positive.

I have seen reports of patients who seem to have MG being ridiculed or rejected at a few top named Universities or Clinics
where they should be experiencing a different experience. Some I suspect are seen at teaching universities where many of the doctors are fresh out of school and lack the experience that is necessary.

For others I think there is something else going on like a key member of their department does not believe the MG foundation statement and they just can't take that step of
stating it is MG if the tests aren't positive. That sort of blindness
is damaging to patients and leaves them unsupported and in danger
of not getting supportive care at critical times.

Until awareness is raised among physicians themselves that myasthenia gravis can be double seronegative sites like this help us have the strength to share experiences and help us search for
those physicians who will support us in our search for proper care regardless if our diagnoses turns out to be MG or Lambert Eaton or one of the other neuro junction disorders.

I am not sure if this post helps you with the question you asked but I hope in some way it does. Not every doctor can help you and if they can't dismiss them and get on to finding another one who can.

I am not at all comfortable with the appearance of waffling going on by this neuro. He needs to be up front with you first and foremost.
If he can't help you he should get you to someone who can.

Let us know how things go .....Hugs, Marie

Strizzlow - thanks for your reply, I am sorry that you have to be going through this too!! I really hope you get to see someone soon who can get to the bottom of this for you!!

Greenmarie - Thank you so much, your post really helped. I just feel defeated at the moment, very disillusioned and fed up with the whole thing, I've really had enough of the constant battle and rounds of Doctors and Tests and the months of waiting in between. It is 10 years next month since this all started, and I just don't want to keep doing this...but then I want to be better and know that I have to keep jumping through hoops and putting myself through whatever the Doctors want/need regardless...I feel a bit trapped and resentful of the whole thing if I'm honest and I am starting to wonder if it is worth all of the energy and stress that it causes me which, in turn, only makes me worse! I just want to get on with my life without the constant hospital visits, tests and uncertainty! I don't expect to be swinging from the chandeliers or anything, but something beyond just about making it through the day would be nice!

Sorry to rant, I think my optimism and positivity have both gone on a well earned holiday....so maybe it will be good for me to deal with the negative feelings I suppress.....only for a little while though! lol!

Thanks again everyone.x

I may have said this to you before, but...

Try mestinon. If it works, you have MG.

It won't hurt you to try it for a bit. Doctor should know that too.

Good luck to you!

TJ

Thanks TJ, I am on Mestinon - initially I was in 60mg 4xper day and it was great for 3/4 months and I seemed to improve until I went on a trip in December! My Neuro put me up to 90mg 5xper day and I seemed to get worse! It may have been a coincidence but I decided to drop the mestinon back down to 60mg and the breathing issues got better! The 60mg only helps slightly with the weakness so I am toying with increasing it again incase I had a virus or something when I increased and it wasn't anything to do with the mestinon....but I am a little scared now that I seem on a more even keel!! My Dr said that the next stage was steroids/immunosuppressants and he was willing to try them regardless of my imminent SFEMG result....but the letter to my GP seemed to say he wanted more evidence if MG before trying the more aggressive treatments?! I don't know, I aM confused....and would just like to be able to function do I can keep working (I am currently signed off) and looking after my daughters?!

Thanks again :)

So the antibodies do in fact exist. You know that and so does your doctor. The level will surely fluctuate.

Various data over the years shows this:

":A rough correlation has been found between antibody titer and the severity of disease. Immunosuppressive treatment and thymectomy decrease the titer."

http://www.ncbi.nlm.nih.gov/pubmed/263985

"Despite the lack of AChR antibodies detectable by routine
immunoprecipitation assays, SNMG patients clearly have
an antibody-mediated disease, responding to immunosup-
pressive treatment and plasma exchange in a similar manner
to patients with AChR-MG and also frequently have thymic
changes"

I thought this was a pretty cool breakdown:

http://brain.oxfordjournals.org/content/131/7/1940.full.pdf

We have information like this in our links group here, which you are welcome to peruse through also.

How did the CT scan go?

You have to remember that too much mestinon can in fact make us weaker and we have to find that "sweet spot" that our bodies like at the time. If you did have a virus, it certainly will affect you and your MG. It can be frustrating, no doubt!

We are here for you and please continue to let us know how you are doing. We understand these decisions are not easy ones to make, especially when we also take into consideration our loved ones. Try mestinon 90mg every 4-5 hrs and see how it goes. That is a solid dosage. If you feel you are needing more mestinon, it is very possible treatment is necessary to move this back.

I personally tried to stay on mestinon only for months and just got worse having to take more and more. I never wanted to take steroids, my doctor felt the same way and actually never recommended it for me. So, I started Cellcept and did IVIG to push this back. I continued to take mestinon for symptoms and have continued to reduce my mestinon intake over time. It has now been over three years on Cellcept and I have gone from well over 90mg of mestinon every five hrs to now 60mg for the entire day! I don't even need to take it, but I know that it makes me stronger, so I still take one during my days or just base it on how active I will be usually. Perhaps Cellcept is an option for you? It is the safest thing we can take, but it will take months to kick in IF it is to work. That is always the kicker...time.

Has IVIG been considered? What drugs/aggressive treatments are you and your doctor(s) considering?

Plenty of information here by so many sharp individuals!

TJ

Hi, I am just wondering how you are feeling? Did you change up your mestonin to feel better or have you seen the neuro yet? I can only imagine what it feels like to be disregarded .. hope you are getting some help.