There are three doctors at UTSW who claim to have interest in LEMS. Trevedi, Nations and Phillips.
I go to University of Florida, Shands, Jacksonville. And while my doctor is not what I'd call an expert, he has had as many as ten LEMS patients and approved to prescribe Dap. He does, however treat me very aggressively, trying to restore me to as normal as possible.
Your own doctor can go through the process of being approved, if not already, but I understand it is a lengthy process with a lot of paperwork.
To find an already approved doctor in your area, Kathy Ales is with Jacobus, the manufacturer of 3,4 Dap, and is the coordinator for the DAP trials. You can give her a call or email her. Contact: Kathy L Aleš, MD 609-921-7447 ext 238 kathy.ales@jacobus-pharmaceutical.com. I understand she is very friendly and helpful.

This may not necessarily get you the Dap, but will put you in touch with those familiar with LEMS and how to diagnose and treat it.
Best wishes for you to get some sort of treatment back in place.:hug:

Thank you so much!!!! You have been so helpful! I wonder why the process to be approved to prescribe DAP is so strenuous?? I sure would love if that was an answer to all of this mess, and it could help me and make me feel semi normal ... I"ve long given up the idea that I will ever feel like my old normal.. I was running miles for a few weeks after I had my son, before this all started.. it's amazing how my body just turned against me! I will be asking more questions about LEMS to my doctor next time I go in (which may be very very soon at this rate)..
Thanks again Limpy, you're always so helpful!

The reason it's so difficult to get certified to prescribe Dap is that it is not FDA approved, mainly because LEMS is so rare and there are not that many people needing it.
Special permission must be obtained to prescribe it on a compassionate use basis. It has been provided free by Jacobus, a small family owned company, for upwards of twenty years. Usually the only cost is for shipping it.
There is another company, Catalyst, that is a publicly owned company, that is trying to get FDA approval for the same drug, only tweaked a little so that it doesn't have to be refrigerated. They are looking to charge exorbitant rates for this same free drug, claiming that is a brand new treatment.

We are all holding our breath waiting to see how it all plays out.
I hope you can get a treatment that works for you whatever it may be.

I don't know anything helpful, but just wanted to say I hope you can get your treatment in whatever. way. Good luck!

Don't you also have a immunodeficiency? I can't recall. That would make IVIG approved for long-term use, not only "Help me, I can't move or breathe emergency use."

3,4-DAP should be available!! Compassionate use, Limpy? Wow, every single patient deserves compassionate care!

LEMS is a tricky disease. What drugs are you on right now, bny? Have they checked you out for any cancers?

Annie

Thanks Ravenclaw, limpy and Annie- I appreciate it!

Annie, I have MTHFR (homozygous). and my WBC has always been below 4 since this whole thing started 5 years ago, and the past year has been in the 2's (as low as 2.1) or the low 3's. I Have an upcoming apt with a heme/onc doc for the first time ugh.. Yes.. I have had colonscopies, CT chests, , pelvic ultrasounds etc etc.. so far so good (unless the blood ends up being something).. they were going to talk about putting me on immunosuppresants, but the idea of that with such low wbc makes me nervous

So, I had my apt today.. and am so so thankful that I got IVIG covered for a while at least.. phew (kind of a long story).. but I can't believe how much I declined over the past 3 weeks.. it is shocking how fast it all happened.. and terrifying! Though my hormones were lined up with the wrong timing, plus I was exposed to a respiratory virus, so if I"m fighting that, that's not helping either. I was afraid this weekend, that I needed to go to the hospital on a few different occassions, but I was extremely non productive and took it really easy, which helped..

thank yall for y'alls help. I really appreciate it!

No, I meant immunoglobulins, such as IgA, IgG, etc. Or didn't you get the results of those tests? Sorry, can't remember.

Annie

oh sorry Annie! They did those tests years ago, but they were all high or ok, but i was currently on IVIG.. so they weren't even sure how to interpret them, I never had them prior to or while not on IVIG

Has anyone ever done a differential diagnosis on the low WBC?

http://www.mayoclinic.org/symptoms/l...s/sym-20050615

There has to be something causing it.

Are you taking methylcobalamin daily? Dare I say, at least twice a day?

Thanks Annie- Yes I take mythlcobalmin 5000mcg once a day... They haven't said too much.. most doctors think it's caused by the IVIG.. I have read that IVIG can cause transient leukopenia, but i can't find anywhere that it can cause long standing leukopenia - have you?

Since it has been so persistent, and so low they want me to see a heme/onc doc now.. the rheumy said she see's this a lot with lupus and autoimmune issues.. but still thinks it's ivig related. however she wants to rule out cancers obviously before chalking it up to ivig.. I dont' think throwing immunosuppresants on top of that would be a very good choice.. I don't feel like they think it would be that big of a deal though.. they said they would just monitor my wbc.. .but if it's already low.. then why would you even start them?
I am really struggling from that IVIG break.. :( I forgot how awful this all feels