Who diagnosed you with LEMS and who currently treats your LEMS?

[Joyce Crawford]

Hi Everyone,

This is my first post. I am still in the early stages of being tested to confirm my LEMS diagnosis. I had a positive VGCC type P/Q AB test in June, but my doctor wants to confirm it with Mayo Lab testing. If I could take a moment to vent a little please excuse me.

My doctor seems great. I first saw him in June and he seemed to immediately know what direction to look for a diagnosis. After dealing with many other doctors over the last 10 years trying to get help, while slowly losing function the entire time, he seemed to be a Godsend. I truly had questioned my sanity during all the ups and downs of fighting to get help. Now my biggest roadblock seems to be his incompetent or more likely, just unfeeling ‘nurse’. As a nurse of 41 years with experience in many varied fields, I find this very hard to tolerate. When the Mayo tests were finally ordered last month, after a delay of 4 weeks, which was never explained, I questioned the 2 tests ordered, as they were for ‘stiff person syndrome’ not LEMS. All I could get out of this nurse was ‘that’s exactly what I was told to order and Mayo walked me through it’. Yesterday when my doctor realized that the wrong tests were done, he apologized. I realize that people make mistakes, but a good nurse checks to be sure that the tests are appropriate for the patient. Now I’m having to wait again for more tests results and having the stress of dealing with his office to find out who is going to pay for the $775 bill for tests that were wrong.

On a good note, they do think that Mayo has enough blood from the first tests to complete the correct tests. I pray that they are right, as it took so long to get my blood drawn the first time. Since I live 1 1/2 hours from my doctor, Mayo sent a lab tech to my home. Why it took 4 weeks to get it arranged was never explained.

I have learned a lot from reading on the forum and hope to be able to contribute in a helpful manner in the future.

Thanks for your support.

Joyce

[Dawn DeBois]

Hi @joyce275,

I’m so happy to have you join us and post your first post!  I’m sorry to hear about the challenges with getting the correct Mayo test ordered, though!  I know how difficult it is and my lab that has done my Mayo test each time has had to double check.  I recently had my antibody levels tested again to compare to how they were prior to my current treatment regimen, and I made sure to go to the same lab. I certainly hope the office manager at your doctor’s office can do something about that huge bill for the incorrect test!

It is normal for the Mayo paraneoplastic antibody test to take weeks for a turnaround.  I’m glad their nurse came to your home and that the forums have been a good source of information for you! We have a very knowledgeable group of patients as well as great scientific support from our publisher Lambert-Eaton News!

Please keep us posted on  your results. It definitely sounds like you  have a competent neurologist now. I recall full well the relief I felt with my diagnosis that I indeed was not losing my mind with all of the vague symptoms that took so long to diagnose.  For many, getting to diagnosis is the hardest part with LEMS. There are a variety of treatment options available now that help most everyone!

 

[Roberta]

I was diagnosed by a neuromuscular specialist at the University of Wisconsin/Madison. He had trained under Dr Lambert at the Mayo Clinic which certainly helped with my quick diagnosis.  It is a 6 hour drive for me now since I have moved to Iowa from Illinois, but I continue to receive treatment from a neuromuscular specialist there. I go one or twice a year.

[Dawn DeBois]

Wow @bobbi-Lynn-berry !! To be diagnosed my someone trained by Dr. Lambert himself!! That’s amazing!  I’d continue to drive six hours to still be seen by that doctor as well!

[Ashley]

@joyce275

Welcome to the forums! We are happy to have you join us! I’m also a nurse! I’m sorry you are dealing with that, I know that is  frustrating. I’m glad you had a questioning attitude and are able to advocate for yourself although your nurse should have been a better advocate for you. I’m sorry that mishap has added extra stress and time to get your diagnosis. I believe that you should not be financially responsible for the incorrect test they ordered and I would bring that up the chain of command until they handle it for you. I know that is frustrating as well. It is also disappointing that the paraneoplastic panel takes a couple of weeks to get results back as well.

I’m glad that you have found our forum and found it useful! We have a decent sized group here, so it is always nice to have a “sounding board” to bounce ideas and questions off to. If you have any questions, we are always here for you! I hope you will get answers soon as I know that will be a relief for you after waiting so long. Please keep us posted!

 

[Ashley]

@bobbi-Lynn-berry

Wow! I’m glad you had access to someone as knowledgeable as your doctor who trained under Dr. Lambert! I understand why you would want to make that drive! How long did it take you to get a diagnosis?

[Roberta]

The onset of my LEMS was fast. From my first appointment with my family doctor to getting diagnosed by the neuromuscular specialist was six months.

[Ashley]

Hey @bobbi-lynn-berry!

Wow, That’s awesome! I’m so glad you didn’t have to wait too long for a diagnosis! My process was pretty “fast” for a rare disease. It took me about a year!

[Anngail Norris]

I was diagnosed by a neurologist who is actually a specialist for POTS. His name is Dr. Alexaandru Barboi.  He is with the North Shore University Health System in the Chicago area.  He was formerly with Rush University Hospital.  After going to 9 different doctors in the course of a year to no avail, my primary care physician thought I might have POTS.  She arranged for me to see Dr. Barboi.  At first I was going to have to wait almost a year to see him, but my pcp got me an appointment with only a three month wait.  Dr. Barboi did all the tests for POTS and determined I didn’t have it, but had LEMS instead.  I have been very fortunate that Ruzurgi has managed my symptoms.  Since I also have lymphoma, my oncologist at Northwestern conferred with Dr. Barboi and they determined that a round of Rituxan infusions wouldn’t be a bad idea.   Initially I was going to have IVIG infusions also,  but with the pandemic and difficulty getting plasma we have decided to continue with just the Ruzurgi for the time being.

[Ashley]

Hey @anngailn!

Your diagnosis story sounds very similar to mine! I also was able to get in to see my specialist sooner even though I was told I would have to wait 9 months to see him originally. I believe I ended up waiting about two months after my cardiologist diagnosed me with POTS and sent me to my neurologist. My neurologist’s testing ended up taking several months to get everything completed. I have POTS and autonomic neuropathy caused from my Lambert-Eaton. This is actually pretty common!

I’m sorry to hear that you have Lymphoma as well. One of my very good friends from work was just diagnosed about a month ago and has been doing radiation. Did you have to do radiation as well? Did you end up getting Rituxan infusions or did the pandemic prevent that as well? I’m sorry your IVIG got delayed because of it. It has done wonders for me! I am not a candidate for Rituxan because my immune system keeps my blood counts pretty well and I am immunocompromised already. The IVIG also helps keep my counts up so its an added benefit for me!

How is the Ruzurgi working for you?

[Anngail Norris]

@AshleyGregory757

Hello Ashley.

My lymphoma was diagnosed in 2004.  I have a small tumor in the upper left lobe of my Lung.  I did not have radiation.  I had Rituxan in 2004, 2006, and 2016.   When I got the LEMS diagnosis earlier this year, the doctors decided to do another round of Rituxan.  That’s because LEMS is often a precursor or a result of small cell lung cancer.  I never had SCLC, but they figured Rituxan couldn’t hurt.

Ruzurgi is really helping. It took a few weeks to determine the correct dosage. But once it kicked in I was able to walk again, stand up for more than a few minutes, and resume my life, aside from Covid.   A few months ago I thought I was going to spend the rest of my life in a wheelchair.  Thank goodness there are programs that help to defray the astronomical costs.

[Ashley]

Hey @anngailn

I’m sorry you are still going through that! Have you found that the Rituxan helps with your LEMS symptoms or made a big difference for you?

I’m so happy to hear that Ruzurgi is really helping you! I’m glad you were able to find the right dosage for your body! I’m so relieved that you are beginning to have your life back! That’s great news! I agree, I’m thankful for every financial program although I don’t qualify for most.

[Jenny C]

I was just diagnosed a few weeks ago.

I have an unusual route. I had severe double vision onset in February this year. I wear contacts and have terrible vision so I assumed it was my contacts needing to be updated. Because of Covid I could not get into the Opthamologist until June.  He could not figure out the cause. Ran every test in the book and eventually ran the Lems antibody test. Which came up positive.
I have had severe fatigue and weakness for past year but my doctors told me it was menopause. Lol

My opthamologist sent me to a Neuromuscular specialist in Dallas at UT Southwestern (5 1/2 hour round trip for me).

Her name is Dr. Trivadi. She did tell me she’s only had a handful of Lems patients.

They have since sent me for CT scans and MRI twice since I have small nodes on my lung (they say one is “spiculated” so they will watch and repeat in 3 months.). I also had 2 lesions on my liver and they are watching those also.

So I am at very beginning stages of Lems. Look forward to ruling out cancer hopefully. But glad to have a diagnosis besides “menopause”.

[Ashley]

Hey @jennyc

I am also having increasing vision problems, so I understand how frustrating that can be. I’m so glad you were able to advocate for yourself and push for your LEMS diagnosis. I know that sometimes getting a diagnosis can be the “hardest” thing. I felt relief when I finally had my LEMS diagnosis.

Now you know the true cause of your fatigue and weakness! I’m glad that you already had a CT and MRI. Did your doctor order a PET as well?

Sometimes the “rule out” process can take a while which I know can be worrisome. Most studies say that it’s best practice to “watch” for cancer for the first two years after diagnosis. I know a few LEMS patients who also have nodules in their lungs, so try not to worry too much! I’m glad they will be watching you closely!

[Dawn DeBois]

Hi @jennyc,

Welcome to the Forums. We all understand the difficult part of getting a diagnosis such as LEMS but the concern for cancer that goes along with it. I went decades with every other reason given for my weakness, increasing numbness and deteriorating vision other than LEMS. Many of us that have been diagnosed become very active in the LEMS community for more awareness so that patients don’t get put off, like you did.

My vision improved greatly after getting on treatment, I’m very fortunate. I’m even able to wear contacts about 75% of the time after a 10 year break from them due to dry eyes!

Good luck with the cancer screenings. They are worrisome;  but, one thing that LEMS does do for about 60% of LEMS patients is it gives doctors a clue that cancer is there long before you would show signs yourself….this often leads to better outcomes if it is cancer. I am friends with a LEMS patient who had small cell lung cancer and is doing great now. There are also other LEMS patients whose LEMS led to other forms of cancer diagnosis’ and they are doing good these days. We are here for you and there is a Forum I created for patients who do get a cancer diagnosis along with their LEMS. Please keep us posted.

Being the Dallas area, you are at a benefit of having neurologists with more experience with LEMS than most others in the nation. Texas for some reason has one of the highest LEMS rates per capita.. I personally know and have met 4 LEMS patients from Texas….one being @pricewool, who is active in our forums. He lives just outside of Dallas!

Hang in there, this is the second toughest part of having LEMS. The first being getting the diagnosis.  Your eye doctor was amazing! An eye doctor is oftentimes the first “regular doc” to look for LEMS or MG due to the vision issues they see. I have to give kudos to all of them!