Lambert Eaton New support Group
 

I have created a new support group for LAMBERT EATON for us with this syndrome.
NOT MG..

Since most people have facebook anyway it is located here

https://www.facebook.com/groups/lamberteatonsyndrome/

This is for LAMBERT EATON ONLY (not MG, not for people that knew someone with lambert eaton) for those of us WITH Lambert Eaton to discuss medication, diet, patterns, etc.etc.

Dave,

Would you also exclude physicians who don't have LEMS, but are experts in LEMS?
Would you exclude nurses as well?
Would you exclude people who have extensive experience with how fluctuations in acetylcholine can adversely affect the body?
Or exclude hematologists/oncologists who don't have LEMS, but deal with the cancer related issues such as small cell lung cancer that come with LEMS?
Or anyone who simply wishes to support patients with LEMS?
Does it exclude anyone with CMS or any other channelopathy?
What about pets with LEMS?

While I do understand your desire to have a group which consists of only LEMS patients, there is much to be learned by a variety of people—even if they don't have LEMS.

I, for one, respect everyone's input here, no matter if they have MG, LEMS, CMS, or have no clue of what is going on with their body. I'm grateful for this forum, and those who moderate it, because everyone is welcomed here.

And how will you determine if someone truly has LEMS? See my point?

It's your choice to do whatever you wish, however, you might lose out on important insight which could help everyone with LEMS.

Good luck with your endeavor.

Annie

Dave, there is already a closed group called Lambert Eaton Myasthenic Syndrome (LEMS) on facebook. There is a lot of information to be gathered there. And a lot of experience from people around the world who have lem, but i admire your endeavor also.
I have learned a lot from a few myasthenic groups, including this one. Good luck.

I was a member there and got bitched at like a child everything was just way way way off topic at times and you had to weed through 900 things of garbage to even find an answer, then you'd get someone join the group and say o my 3rd step cousin had lambert and they died 5 years ago I need a hug.. it was a sad sad sad group.

Everything you did was moderated and you got messages for nonsense.
I still have some of thise lame messages in my facebook message list ..

Sorry you had a bad experience, but that has not been my experience with the group. I would not have been able to get hooked up with Dap without the information found there.

3,4 Dap is wonderful I have been on it for a while now with the mestinon as well at the same time..

I take mestinon, too. I had rituxan in December, which worked great for a few months, but kept getting weaker, so I am now on Cellcept and doing plasmapheresis, which really helps a lot.

I too just finally started cellcept

We waited because I didn't like the read of the pamphlet so it was agreed, that being stubborn as I am that I would suffer through it with the Lambert, for 2 years of cancer testing, and if cancer free (chest ct scan every 6 months and bloodwork) Then I would try it.


So far 2 years cancer free as if July visit

They put me on very low dose of cellcept

200 mg per ml. I'm taking only 1 ml per day since last Thursday.
Tomorrow I'll go to 1ml 2x a day for 2 weeks.

It was explained to me this way

Cellcept will get me stronger as it suppress the immune system
(I'm still on 15 mg prednisone every other day)

The 3, 4. Dap releases the chemical

The mestinon keeps it from breaking down

The 3, 4 Dap I have been on for over 8 months now no issues but I'm not getting to much stronger on a regular basis..

So we will see what happens with cellcept.

Is your Cellcept in liquid form? I take caplets, 500 mg twice a day. Hoping with that and the plasmapheresis, I will get more strength back.
How much Dap do you take?
I can't take prednisone. Makes all my symptoms worse.

Yes I am on liquid
which is 200mg per ml , so tomorrow I'll start 1ml 2x per day which would equal
400mg total per day.
they want to start me slow an see how I do on it and adjust me up every few weeks.
I will never do that plasmapheresis.


I hated the ivig for over a year and it did nothing for me at all, but the neuro i HAD at the time kept telling me i had to go and kept ordering it..
I got a REAL neuro now Down at hershey medical center and it is night and day..
Hershey also has access to the 3,4 Dap :)


dap schedule is 100mg ( they told me this is the max per day)

6 am 20mg with mestinon liquid 10ml = 2tsp
930 am 15mg with mestinon liquid 10ml = 2tsp
1pm 20mg with mestinon liquid 10ml = 2tsp
430pm 15mg with mestinon liquid 10ml = 2tsp
8pm 15mg with mestinon liquid 10ml = 2tsp
1130pm 15 mg ( i added this one as i was having trouble breathing at night) no mestinon as max dose was reached at he 8pm mark

I was on 20 mg 5X a day but that was leaving me at the 8pm dose and it was hell to breathe at nigh by midnght
so we stretched the dap out and brought some doses down as above to 15mg so i can get that extra time slot in, to breathe at night