Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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limpnoodle 02/05/2013

My local neurologist called me this morning and told me to come in right away. My test for L.E.M.S. came back raging positive. He put me back in the hospital and is going to do plasmapheresis. Does this mean I have to join another forum?
Is there a separate one for L.E.M.S.?
I feel a little less mentally ill now that I have a diagnosis, although a little more concerned about the cancer issue.

bweeds 02/05/2013

Linda,
Of course you do not have to join another forum, once family, always family. LEMS has its pecularities, but it is also autoimmune. The LEMS that is associated with neoplasms often resolves with surgical removal of the tumor or tumors, but many do not have that explanation and are treated much like MG. In any case, we are all rarities! Congratulations and commiseration on your diagnosis. Now they can get to work helping you feel better. b.

cgreens 02/05/2013

Congratulations! Always good to have that name associated with condition. It must be a big relief. I know it was for me when I found MG and suggested it to my doctor for testing. I had no idea how bad I was going to get, that is for sure!

Now to get you feeling better...

deleted_user 02/05/2013

Finding out what the disease is does help, even though learning we have MG is not really good. So, good that you are diagnosed--and now treatment is much clearer, and my sympathy for finding out you too have MG

LEMS has much the same problems and treatment as MG in general, so I think most of the concerns are similar for all of us with MG. I don't know if there is any special LEMS group.

In LEMS, the messages between nerves and muscles are weak, just like with regular MG. However the location for the weakness is on the nerve edge rather than on the muscle edge of the communication link, the neuromuscular junction.

The antibodies in LEMS decrease the release of the message chemicals whereas in the other MG (I have), our muscle receptors are attacked so the messenger chemical can't get through.

Same bottom line, just a different part of the neuromuscular junction being attacked by bad antibodies. LEMS is sometimes triggered by an existing cancer, so you will be checked thoroughly for any signs of cancer.

Good Luck!

limpnoodle 02/05/2013

Thanks all. I have had a kind of euphoria since I found out I am not nuts, well, not so much as they thought anyway. Now I feel like I know the enemy and can be more prepared to fight.

txkiki53 02/05/2013

So glad you are getting answers. You are and will always be a part of our group.. Good luck
Annette

RosieSoaring 02/05/2013

Congratulations... at long last!!! I can put you in touch with a small online LEMS group if you like... as long as you promise not to leave us here!!! We have at least one other member who has been diagnosed with LEMS that I could connect you with, as well.

Hugs and celebrations!!! Rosie

limpnoodle 02/05/2013

You guys are my lifeline. Can't give that up.

RosieSoaring 02/06/2013

Linda... I sent you the info about the other MD member and the LEMS group via private message. Did you see it? Hugs, Rosie

limpnoodle 02/06/2013

I will go check it out. My eyes have been bad most of the day so I just got on here. Thanks.

DebbieF777 02/07/2013

So happy that you have a diagnosis. Don't worry about the prognosis yet. It very well can be quite good. No need to borrow trouble. You will be supported right here.

Hugs

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