[imdan]

Hi, i was recently diagnosed with anti musk positive, Mg, went into icu for crisis.
still trying to sort this stuff out. I just got some of my med papers from hospital. it says I had a titer of over 5000 when normal is 10.

What does that mean? titer over 5000

thanx
Dan

[cait24]

There is much controversy over whether level indicate severity of disease. Some sites say they do some say they don't. The important thing is that your levels leave no doubt, you have MG.

Hang on to that paperwork and keep it in a safe place, Antibody level often fluctuate over time and medications and you do not want your diagnosis questioned.

kathie

[AnnieB3]

Dan, I'm sorry to hear that you had a crisis. What treatment did they do for you?

MuSK is a different MG animal, and may have many "subgroups" within it. I suggest that you read the below articles—when you're up to it—and read as much as you can on MuSK in PubMed or elsewhere.

For some patients, since there might be a post-synaptic process going on, Mestinon might not work as well. How much of it are you on? Did they say you had a myasthenic or cholinergic crisis? Sometimes it's hard to tell.

You might need to consult with an expert at a larger clinic. Do you mind my asking where you currently go?

Kathie is right about the antibody count not necessarily correlating with any disease severity. It's really more important to go by how you are feeling, or how a clinical exam is.

Was there anything in particular you can point to that might've started the crisis? How quickly did it come on? Were you doing too much?

Treatment for your MG might be completely different than for AChR positive MGers.

If only this were an easy disease to have! You really need to have an appointment with your neuro soon to discuss all of this. And get to know when you might be getting worse and back off on activity.

Since you just had a crisis, it can take even longer to recover from that (the worse you get, the longer it takes). It took me a month to get back to my normal after my crisis.

Take it easy!!!


Annie


Scan down to see the MuSK section in this first site.

http://neuromuscular.wustl.edu/mtime/mgdrug.html#musk

More articles.

http://onlinelibrary.wiley.com/doi/1...5.012/abstract

http://www.ncbi.nlm.nih.gov/pubmed/21674519

"The underlying disease mechanism of anti-MuSK MG is still unclear."

http://www.hindawi.com/journals/nri/2011/859802/

http://brain.oxfordjournals.org/cont.../2304.full.pdf

http://www.clinph-journal.com/articl...229-4/abstract