Working with LEMS

[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

[alex kahn]

My daughter has LEMS as well as diabetes type 1. She is 55 years old and lives in Virginia. She has tried to get disability insurance but is unable to because the state of Virginia says you have to have worked in the last ten year. If you can give us any ideas on how to get disability insurance we would appreciate it.
Thank you,

[Ashley]

Hey @alexkahn

I’m not too familiar with the disability process although I do live in Virginia.

@pricewool may be able to help you out with this better than I can although he’s in Texas.

[alex kahn]

Thank you

[Graham Head]

Ashley My “ career” came to a grinding halt three years ago. I taught at a art college there was no way for me to commit to a regular job. My “ day” is punctuated with absolute need to sleep plus getting range of symptoms not related L E M S  I get a disability benefit plus a pension plus all my medication is free. So if your able work keep at it! Graham Head

[Ashley]

Hey @tcarr20,

I’m sorry to hear that your LEMS worsened and you were unable to return to work in January. It breaks my heart to hear that you are still having so many exacerbations this year. I really hope you are able to get long term disability soon. I’ve heard its quite a process and unfortunately, I don’t know too much about it but have heard they can make you jump through a lot of hoops to get approved. I hope its a quick process for you and I’m sorry that its been another long process for you! I wish there was something I could do to help, but I would love to hear how it goes for you and am here for you. Do you have a hearing date scheduled? Are you still receiving IVIG?

@tcarr20

@tcarr20

[Ashley]

Hey @ghead!

It’s great to hear from you! I’m so sorry to hear that you also had to give up your career. I understand having a day punctuated with sleep, that is what I spend a good amount of time doing when I’m not working. Some days/weeks are better than others. I wish we could find a treatment for fatigue. I am happy to hear that you receive disability and your medications though! Was going through the process of getting approved hard? Any wisdom you can offer to those who are going through the process?

@ghead

[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.

[Graham Head]

I think the problem with recognition is the 99.9% of doctors have never our condition. Again I live in the U K which has totally different health care than the U S. Really the only person that can push for insurance and health care support is your Neuro Consultant . Again I’m getting symptoms associated with Parkinson’s ( frozen body movement) M S ( a feeling of cold wetness) but have neither. So there’s a move to put me on Ritluximab.

[Ashley]

@tcarr20

I totally understand, I would have a hard time giving up my career as well. Some days I feel it is my only purpose. I really hope the extra “bump” of IVIG will be beneficial for you. Plasmapheresis is always an option, although it usually requires an inpatient stay from what I’ve heard. Keep me updated!

[Ashley]

@ghead

I completely agree with you! It’s very frustrating that most know nothing about LEMS and it isn’t something usually taught in medical school. I have found that a lot of the newer students in medical school seem to know a little bit about it, although not enough to treat it. I’m sorry to hear that you are experiencing symptoms that you don’t have a “reason” for. I’ve heard of a few people who have had great success with Rituximab. If you’ve tried most of the other treatments, it’s definitely worth a shot to see if it can help you (at least in my opinion).

[RDT]

I was a nurse and Clinical Research Scientist before becoming severely ill. I applied for disability through work in 2016 but was denied. That was before LEMS diagnosis. After LEMS diagnosis along with vocal cord atrophy/weakness, CFS and severe neuropathy, I applied directly for SSD (social security disability) ~2016/2017. Was originally denied at first application. Went through the appeal process and sat before a judge and finally in mid 2019 was approved for SSD and original denial overturned. I’d much rather be working though than completely incapacitated by these chronic diseases 🙁

[Ashley]

@rdt

Sorry to hear that you are also unable to work Rebecca. May I ask what conditions you had prior to your LEMS diagnosis? Or did you apply before your diagnosis but because of LEMS related symptoms? I’m glad you were able to get the original denial of SSD overturned, it saddens me that it is such a long drawn out process for most it seems.

[RDT]

Yes I already had a few health conditions prior to LEMS diagnosis mostly as complications resulting from tick Bourne infections/disease. But in 2016 started a huge flare of POTS and other cardiac issues which eventually turned out to be the start of LEMS sadly a year later. 😿

[Ashley]

@rdt

Good morning,

I do remember chatting with you previously about Lyme disease. I’m sorry you are still going through this, I hope you are doing better now. I understand the frustration that comes with waiting for a diagnosis, my diagnosis also took a year but I feel fortunate because I know some have waited more than 10 years.

I have made a personal goal at work to educate as many doctors, students and staff members about LEMS and rare diseases in hopes to spread awareness and prevent a long diagnosis time in the future. Sadly, this is very common for all rare disease patients but you can help by spreading awareness as well and sharing your story!

[RDT]

@tcarr20

Hi Tescha,

I got an email response from you on this post, however I can’t seem to find in the thread what you responded back to me in the email?  Oh well.

I’m sure you remember what you wrote so I’ll just respond lol.

From your response we totally sound alike symptoms wise. I have minor diaphragm weakness as well!! My neuropathy also started just hands & legs but over the last 3 yrs it’s spread to eyes, ears, throat, face… literally everywhere. It’s pretty terrible.

Id love to hear more info on the rebuilder & anodyne treatments you’re using?? Not sure if I’m familiar with this???

Is you’re memory affected at all? If yes, then definitely get a neuropsych evaluation test done to submit along with your disability case. Makes a huge difference as well.

Basically where my neuromuscular weakness is the weakest is closest to the brain stem/spinal cord. So only EMGs done at the neck or shoulders or Single fiber EMGs will show up positive.

Normally only a NM dr that has a lot of experience with LEMS patients will be aware of this fact. So it’s not the issue of that particular NM was great, he just had a lot of LEMS patients. At the time I was seeing him, he had 10 other LEMS patients beside myself. So he was experienced. But after I failed treatment with IVIG & 3,4 Dap, I was discharged from care since he didn’t know what to do next for me. It’s all a juggling act sadly but I think I have a good care team now and hopeful for improvement. But I did travel throughout the US to see several NM specialist. Some great but most not so much. Catalyst was essential in helping me find providers. Hoping I answered your questions. Feel free to message me anytime <3

[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

 

[Ashley]

@tcarr20

I was also looking for your comment because I got an e-mail about your response, but was unable to find it. I’m glad to hear that you and  @RDT have connected and share similar situations and symptoms! I think @RDT  raised some really great points and I’m glad you two can bounce ideas off of each other. I’m sorry I can’t be of much help to you regarding the disability process but I’m glad Rebecca can help you with that as well! It makes me happy to see that you guys are connecting with each other and I hope you continue to do so!

I’m sad to hear that IVIG hasn’t helped you as much as it was helping previously. I also am on propanolol and another drug called Corlanor (which has really been a lifesaver) because my LEMS caused neuropathy to my cardiac conduction circuit.

What day are you getting your port in and getting plasma exchange? I would love to check on you after!

I also find that I have memory issues and problems with brain fog. I think it may be a common symptom of LEMS, I know it is also pretty common with dysautonomia. Often, I find myself having trouble finding words for some things. I have also considered going to see a neuro psychiatrist but just don’t have the time right now as bad as that may sound.

I hope your port placement goes well! I really love my port and it has made things a lot easier for me, I hope you have a similar feeling after you get yours! I hope the plasmapheresis will give you the relief you deserve.

[Paul Kohlhoff]

I know I’m responding awhile after this post was started but it’s new to me.   After over 2 years of seeking a diagnosis for several seemingly unrelated issues, I was diagnosed with LEMS in October of 2020.   In addition to the limb muscle weakness; it’s been comforting to see others mention other issues that my Doctors do not feel are related to LEMS (right diaphragm weakness, vision issues, sporadic swallowing problems, fatigue, and  speech issues.

It was a struggle working pre-covid as my job should requires a good amount of travel.    I’m at the point with the vision issues that I’ve driven very little in the last year and also feel guilty that I haven’t been able to give full effort for my work.

I’m considering applying for short-term disability with my employer that last up to 6 months and hope to find an effective treatment in that time.  I’ve already tried the maximum dosage of Rezurgi and on the IVIG infusion now.  Neither have had any positive impact but I have had many of the side effects listed for both, which is quite depressing.

I’m interested in other’s opinions if pursuing a sort-term leave is appropriate.  It’s a very difficult decision and feel guilty that my wife is returning to full-time work for concern about maintaining health insurance.

Thanks for any thoughts on the matter.

Paul

[Price Wooldridge]

@paulk Hi Paul, I’m sure @ashleygregory757 will respond too, but many of the issues you mentioned are often related to LEMS. It’s unfortunate that the treatments you’ve tried have not had much impact. There are other treatment options, so be proactive and keep after your neurologist to help you find an effective treatment plan. You’ve by no means exhausted your options!

[Ashley]

Hey @paulk

Sorry for the slow reply on my part. Like Price said, many LEMS patients experience difficulties with swallowing, diaphragm weakness, and vision issues. I think we all struggle with fatigue. For me, fatigue is my biggest problem especially when I am stressed.

I’m sorry that LEMS has left you struggling with work. Many LEMS patients are unable to work, like you. I definitely recommend getting an FMLA signed by your doctor if you don’t already have one. This will protect you at work and prevent your workplace from firing you for health reasons. This also allows you to have 12 weeks of leave throughout the year.

A lot of LEMS patients are fully disabled, so you definitely have a good chance of getting short term disability approved