Anbody heard from CowgirlUp?
 

Anybody heard from MK? Remember that she was denied Rituxan by her insurance company -- then, they decided to QUESTION her diagnosis -- and that sort of sent her into a "tail-spin". With her still working full-time -- multiple jobs -- I'm really worried about her. You all know how STRESS affects us.

I think that she mentioned having another EMG -- and not expecting it to show anything.

I haven't heard from her, but I hope that she is doing okay...Situations like these are so stressful!

Sending good wishes and positive thoughts your way, Cowgirl!:hug:
Nicky

yes, it is concerning, as she seemed so lonely, and with so much to deal with.

I have also done some more researching on Rituximab in MG. and found out that at least some neuros are concerned about giving it to patients with severe respiratory symptoms, who require respiratory support. probably becaue of its acute side effects of rigors, and sometimes transient drops in O2 sats, and also rare instances of respiratory symptoms following its administration that may be more significant in patients with significant resp. problems to begin with. ( I wasn't given the exact reason for their concerns, so I am basically speculating here).

and also as I understood they are much more cautious, as it is still considered an experimental treatment for MG.

I have also heard first hand from a patient currently recieving it (on another MG support group), that she had severe weakness for a few days after the infussion, and some shortness of breath that she did not have before.

on the other hand it seems that there are quite a few patients that were refractory to other treatments and went into remission with rituxan. my neuro has one such patient, which he said had an amazing response after 5 years of being refractory to almost everything that she got, but, the data is still sporadic and sparse.

so if her condition becomes signifcantly worse, it may become muchy more of a problem for her to get it, and it does seem to be her only hope for a better future, as she is already maxed on plasmapharesis as I understood from her posts.

so hopefully she did manage to find some solutions eventually. I know that there are times, when it seems that you have no options left, and then something comes up unexpectedly that really helps.

alice

Aww . . . you guys are so sweet to be worried about me! I'm still here . . . so here's an update.

My second appeal regarding the Rituxan was denied. :( As Alice says, it's still considered experimental, although there's good results for refactory MG, which is what the neurologist says I have. It's frustrating because other companies are paying for it, and as my neurologist noted, pretty much every treatment for MG is off label and may be considered experimental. My neuro is pretty unhappy that they won't pay for it even though he sent them all kinds of research regarding it's effects on MG.

I did have an EMG last week, and then a single fiber test as well. Both were done on my left arm and both were normal, which neither of us were surprised by since it was normal before. Now we have set up to do a single fiber test on my intercostal muscles and maybe my diaphragm as well. We haven't done that before. So NOT looking forward to this as these tests are painful, and I feel like I'm only doing this to try to prove something to the insurance company--it's not going to really help me in any way since they do seem dead set against ever paying for the Rituxan even if I prove I have MG through some kind of test. I feel like I have to go through these painful tests, lose time from work, etc. really for nothing in the end. I asked both the neurologist and the pharesis doc again if they still think I have MG even though my tests are normal and they both said absolutely and that there is nothing else that would account for my symptoms. What the hell does the insurance want?? Yes, a positive test would prove I have MG, but a negative test doesn't prove I don't. It's such a waste of everyone's time and energy, especially mine. My neuro said he's going to write another letter to the company detailing all of the evidence for MG in my case and that he doesn't think they will try to deny me any other treatments. He said they were questioning the dx, but they weren't reviewing my whole case or asking for another opinion or anything like that, so I guess that's good. I think now he's seeing it as a challenge and that's making him do more. I'm just very frustrated with the whole thing, and disappointed about treatment. The neuro says there is yet another med I can try, but he's not that hopeful that it will work any better than the Cellcept does. But I told him I was willing to try whatever we could because I really need to not have so many sx if that's at all possible.

So that's my MG update. I won't bore you with my work nightmare and other crap that's also going on. Suffice it to say that I'm quite stressed and wish I could just quit everything and just sit for about a month. Too bad that's not going to happen.

Thanks so much for caring about me enough to wonder how I'm doing and to actually take the time to post. That really means a lot to me! I wish I had better news. I'll let you know if anything happy happens. :) I do hope that all of you are doing well.

MK

MK, I'm sorry the drug was denied.

Dr. Howard, an MG expert (for years) at UNC in North Carolina and nice neuro, has said that it is highly dangerous to do the intercostal muscles during SFEMG. I know that you want answers but at what cost to you?

Can't they do the forehead/face?

You are on MG drugs, so a SFEMG will more than likely be normal.

It seems like an exercise in futility, that will cause you pain, money and will more than likely be negative. And you can't go off of drugs right now due to how badly you are doing.

That's just my opinion, via a smart doctor.

I hope you can get all things worked out, at work and with your MG.

Annie

Oh, MK, GREATLY relieved to hear from you -- sooooooo sorry that your insurance is STILL denying this -- but, it just WARMS my heart that your docs are SOOOO on your side and supporting your diagnosis!!!

With all of this stress -- it is just a plain MIRACLE that you are still working!! Heck, it is a miracle that you aren't in the hospital!!

Still praying that something good will happen soon!!!:hug:

Hey MK,

Sounds like an awful situation. Plus you have to go through the SFEMG again. I have that stupid test.

You have to be darn tough to be doing what you're doing. I hope you get more help and SOON.

Ally

MK, I just found this thread: http://neurotalk.psychcentral.com/thread46211.html

more info about Rituxan.