[Tescha]

@priceWooldridge.

I have been on IVIG every 2 weeks for 2 years and plasma for 1 year.  I didn’t have any insurance issues until this past Oct 2021 when I started Medicare.  I was told Medicare guidelines only pays for IVIG every 31 days.  I have been receiving IVIG every 2 wks for years.   Since they change my condition has worsened and developed new symptoms too.  My neuromuscular specialist states now i have multiple organ involvement.  Has anyone ran into issues with Medicare?

Tescha

[Tescha]

@asheleygregory.  Thank you so much for sharing! yes we all go through difficult and stressful bumps in the road but it takes strength and courage to share your struggles.  And for that I thank you for sharing and expressing your struggles.  We are here for you to listen and help!!!  Thinking of you!!! your LEM’s support and cheerleader for team Ashley!!!

 

Tescha

[Tescha]

Good Morning Everyone!!!

I have LEMS no other autoimmune diseases and for the last year I’ve been taking 80 mg of Firdapse,  Prednisone 40 mg-10 mg but recently tapered down to 10 mg yay!  Plasmapheresis and IVIG every 2 weeks.    My doctors are discussing changing me to Rituxan which obviously comes with risk like everything else.  I’m unable to receive the covid vaccination or any vaccination at this time.    I’m going out to Mayo clinic next week and hope they will have more guidance as which treatment direction I should go.  Take care!!

Tescha

[Tescha]

Omgish yes I get brain fog all the time.  Lost train of thought or saying the wrong word.  My memory is also not as good and I forget things all the time. I have so many list or alarms for things so I won’t forget. Its extremely frustrating when you know that’s not the normal you.

 

Tescha

[Tescha]

• @jangrizzle
• My most recent P/Q calcium channel AB was 0.17.   My EMG still normal.
• My current treatment is firadpse 20 mg QID.  Prednisone 20 mg daily, bactrim DS 3 days a week,  every 2 weeks plasmapheresis (mondays) followed with IVIG wed.  Propranolol 10 mg TID.

[Tescha]

Good morning!  I have positive P/Q calcium channel AB.  Interesting story when I started my symptoms 8 years ago the neurologist then tested me for calcium channel Ab and my P/Q was slightly elevated at that time but I didnt know about it.  In dictation said believe it was false positive.  So July 2019 tested again elevated higher but EMG didnt support.  Repeated test Nov 2019 level higher then finally diagnosed with LEMs!

[Tescha]

I definitely have “LEMs voice” but it developed from paralysis of one of my vocal cords due to the LEMs.  It does worsen with frequent talking,  progression of the day, and/or how bad my symptoms are that day.

Tescha

[Tescha]

@ashleygregory757,

Parasailing is so fun!!! I’m so happy to see that you had a great birthday filled with laughs, fun and new adventures!!!

[Tescha]

@ashleygregory757
Oh that would be great!!! let me know what you find out!!

[Tescha]

@ashleygregory757, I have noticed visual changes over the last few months as well. Its definitely more blurry and looking at any screen or light enhances it. I wasn’t sure if it was the Firdapse or possibly the IVIG contributing to this acute worsening. I know Firdapse can cause some visual changes but I wasn’t sure about the IVIG. In the last month it has been very noticeable making it difficult to read at times.

Tescha

[Tescha]

@RDT

Thank you so much for your message.  I have no idea what happened to that message.  Either way you did a great job answering my questions lol.

My neuropathy has definitely improved since I started doing the treatments.  Heres the website for you.

https://momentumhealthneuropathy.com/optin-399934811591688397995

Before starting treatment my legs were bad, tingling/numbness to my knees, aching, uncomfortable and I would itch them in my sleep then wake up with scratches and dried blood.  But now no itching and only numbness/tingling on my feet.  I also treat my hands as well.

My biggest issues right now our respiratory muscle weakness and vocal cord paresis.  Do you have vocal cord issues as well?

I was doing ivig every 3 weeks but changed to every 2 weeks.  Also prednisone, firdapse and propranolol.   After seeing my doctor this week.  I’m now having a port placed and getting plasma exchange done.  Then will have plasma followed by ivig every 2 weeks. Im really hopeful that this will be my answers.  Yeah I do have memory issues which is interesting because it’s never a symptom talked about with LEMS yet it seems it affects many.

 

Tescha

 

[Tescha]

<p style=”text-align: left;”>After 8 years of symptoms and many doctors I was finally diagnosed with LEMs Dec 2019.  I have yet to meet any other amazing LEMs patients!</p>
 

[Tescha]

Hello yeah it’s quite a process and I wish it wasnt something I had to do.  My physician just increased my ivig to every 2 weeks instead of 3.  Increased prednisone back to 40 mg daily.  Still on firadpse 20 mg qid.  Mestinion didnt help in conjunction with firdapse.  They are considering plasmapheresis.

[Tescha]

Hey Ashley,  I’ve been a physician assistant for 14 years in the emergency department and up until April 2019 I was working full time.  My LEMs worsened so was out of work end of April till Oct 2019 then did part time.  Unfortunatly I was unable to return Jan 2020.  I had short term disability may- aug 2019 then denied Oct 2019 for long term.  JAN 2020 filed short term again and now have  disability attorney for my LTD appeal.  It has been quite the process and very emotionally and financially draining.  I’m looking for some at home part time work but it’s been difficult since my LEMs has caused vocal cord paresis.  So my talking is somewhat limited.  I hope this helps

 

Tescha

[Tescha]

Hi Price,  I understand your frustration with the waxing and waning of symptoms.  I too have big changes from day to day.  When I started my ivig infusions 6 months ago I had great improvment for about 10 days then declined.  But my last 4 infusions I only had a few days of improvment.  I have them every 3 wks but as of today my doctor increased it to every 2 wks. I hope this helps

Tescha.

[Tescha]

Thank you Ashley! It was a great video.  Dr. Najeeb always does a great job!  Thank you

 

Tescha

[Tescha]

Thinking of you Dawn!!!    Sometimes we all have to step back and take care of ourselves.  Just know I’m thinking and praying for you!!!  Thank you  Ashley and Price for helping and taking the time to continue the amazing forums.   I appreciate all your work!!

 

Tescha

[Tescha]

Price, I’m glad to hear that you found a combination that is working good for you.   My pre-medications have been working well for me but I still get SOB and tachycardia after treatments for about 24 hours.   Initially when I started IVIG in Feb of this year I had great improvements which typically lasted 2 weeks then I would decline until next treatment.     However, my last two IVIG treatments haven’t given me improvements of my symptoms.   So that has me concerned since Initially the treatments worked so well and now I see now improvement after treatment.

 

Tescha

[Tescha]

Hi Ashley,

I also have POTS/Sysautonomia and psoriasis.

Tescha

[Tescha]

thank you!!

[Tescha]

Thanks Ashley!!!  I hope the combination improves my quality of life too!   Safe healthy and be safe everyone

[Tescha]

Thank you so much for your comments!!!   I have been on Firdapse since Dec 29, 2019, then in feb added prednisone and  started IVIG.  I just finished my second IVIG this week.  I’m also on Propranolol and Northera.   I’m hopeful that this combination will be the answer I have been looking for.   Just wondering if anyone else with Autoimmune LEMS has experienced respiratory distress and hypoxia?

 

Tescha

[Tescha]

Morning everyone, I am very grateful for LEMS news forum!  I wanted to take a few minutes to introduce myself and share my story to my diagnosis of Autoimmune LEMS.     Starting in 2010, I developed symptoms postural tachycardia, fatigue, weakness, tingling/numbness of lower extremities, shortness of breath with exertion, and exercise intolerance. I continue to have recurring symptoms for 10 years and with each flare lasting approximately 6 months then returned to baseline.  However in Feb 2016, I developed a respiratory failure which required admission and oxygen for 6-8 months.    I was evaluated by many specialist neurologist, cardiologist, pulmonologist, neuromuscular specialist all over the country and it was still unknown the cause of my symptoms or respiratory failure.   4 months prior,  I was rock climbing, running, hiking, biking, and playing sports to respiratory failure and on oxygen.    I had improvements over the next 2 years but never returned to baseline.   April 2019, I woke up suddenly with recurrent symptoms and while at work had near syncope with hypotension, tachycardia and hypoxia.   Finally December 2019, I received my primary diagnosis of Autoimmune LEMS and secondary diagnosis of worsening tachycardia.  Started on daily Prednisone and 2 weeks later IVIG infusion of gammagard.    After 2 weeks my hypoxia resolved.

I have worked as a Physician Assistant in the Emergency Department for 14 years until April 2019 when I had to be placed on short time disability.  I returned to part time work Oct-Dec 2019 however my symptoms worsened and as a result lost my employment.     I hope to return to practicing medicine in the near future but for now my focus and goal is to improve, regain strength, and to one day return to my activities (running, biking, and hiking) that I love!

Thank you

Tescha

[Tescha]

Hi Everyone!!! I’m from Michigan!