Where is everyone from?

[spring]

Brainerd, MN

[dawn-debois]

I’m in Bangor, Maine- home of horror writer, Stephen King!

[joanne-evans]

Hello. My name is Joanne Evans and I am from Vancouver island in British Columbia Canada.

I have recently been diagnosed with lems after 8 years of symptoms. I have just gone through cancer screening which has come back negative   I have an appointment with my neurologist next month and hoping for a treatment.

I am thinking that we probably won’t have some of the medications available in Canada but I am keeping my fingers crossed for some relief.

[dawn-debois]

Welcome Joanne!!
8 years of symptoms is a very long time. Unfortunately that happens with our ultra rare disease!

I’m sure you are relieved your cancer screening came back negative. Good luck with your appointment!

[price-wooldridge]

Fort Worth, Texas, pardner.

[lori-dunham]

We live in Jacksonville Florida. But have our son in college near Buffalo NY, family in Scranton, Pa and Dallas, Texas (places we visit often).

[graham-head]

Unfortunately I’ll have to pass on this I life in Hartlepool on the Northern East coast of England and insurance fees make any flight impossible. Recently planned to visit Florence in Italy but it would cheaper to buy the plane’s aviation fuel. Even so there’s a large outbreak of corona virus there! So is there information needed on the Corona Virus and L E M S?

[Ashley]

Thank you for all the replies, It’s awesome to see where everyone is from!

[carmen-willings]

Dawn! I wish I had “virtually” met you sooner! We went on a road trip to Maine last summer! We even drove by Stephen King’s house! And Price! I just flew into the Fort Worth airport last week making a connection! I was presenting at a conference in Abilene! Lori, I am probably the closest to you – I live just north of Atlanta, GA.

[lori-dunham]

Carmen, I will look you up if we head to Atlanta sometime. We have family in that area as well.

[dawn-debois]

@carmen-fennell-willings, you literally were blocks away from me! I wish we had met sooner as well!!

[dawn-debois]

@lorildunham, is that Grace in your  new profile pic?? It literally brings tears to my eyes to see her.  I can’t wait for you to be able to share more of her story with the world but it does my heart SO good to see her beautiful smile.  Please tell her I said “Hi” and that I’m so happy to hear how great she is doing since adding IVIG to her treatment!!

[michele-quier]

I am from Danielsville, PA.

I have just been diagnosed with LEMS after having the symptoms going on 3 yrs.

I will be getting a CT of lungs and abdomen on Monday but my Neurologist says he would be surprised if cancer shows up as underlying cause since I had it so long? Fingers crossed. I am currently trying to get Ruzurgi approved by insurance. Still dont know if I can even afford it but still waiting for Panther RX Rare Pharmacy to get back to me.

 

[dawn-debois]

Hi @michm7270!

Welcome!  Thanks for joining in the discussion! I have many friends in PA!

I understand your concern about your upcoming scans. My neuro felt the same way as yours did because I had symptoms for decades prior to diagnosis. My neuro was right. I have no signs of cancer and multiple other autoimmune diseases, which makes mine purely autoimmune.

May I ask why you are attempting to get approval for Ruzurgi first? Is that your neuro’s preference? I do know that some patients prefer Ruzurgi but I also know many patients have done well on Firdapse. Catalyst has a program called Catalyst Pathways to assist with approvals and to assist with any out of pocket costs. Because Ruzurgi is “off label” to adults, Jacobus is very limited in how much they can help with out of pocket costs because that would be considered “off label promotion.” Please don’t let the fear of the cost prevent you from accessing treatment if that becomes a barrier.

We are super happy to have you here!

[lori-dunham]

Dawn, yes that’s Grace. I finally figured out how to change my profile picture. I will definitely give her your best. She very much enjoys knowing she isn’t alone In this diagnosis and their are others out there thriving and living a full life!!!!

[carmen-willings]

Dawn, I can’t believe we were so close! We love Maine! It is such a beautiful state!

Lori, definitely let me know if you are in the area! 🙂

[romy-braunstein]

Philadelphia!

[ryan-h]

Toms River, NJ – more minutes from the beautiful Jersey shore that I never get around to visiting.

[dawn-debois]

@reh303 Romy – @romylb lives in Philadephia but has a condo on the Jersey Shore in Atlantic City!  I’m sure she’d love to meet up with you one day!  She is one of the patients I know that has been living with LEMS, diagnosed, for a very long time!  She could tell you stories- and you will laugh at almost all of them! 🙂

[Ashley]

Wow, I’m so happy to see the involvement in this thread! Thank you all!

[tescha]

Hi Everyone!!! I’m from Michigan!

[peter-wessberg]

Hi, I am from Sweden.

[anne-rakestraw-murray]

I live in Atlanta, GA. I’ve suffered from LEMS for nearly 9 years.

[Ashley]

Anne, Peter and Tescha welcome! Glad to have you all here!