[Mary Hudak-Collins]

Price, back in 1986 when I first started working as a nurse in the hospital, flu vaccines were encouraged but not required.  Of course, when they asked us if we wanted to take it, I stood in line with my sleeve rolled up.  I mean, I had just completed the Hep A & B vaccines, so I thought “why not?’

I received the vaccine at the end of my shift and drove home.  Working 11p-7a, I went to bed.  I woke up sick as a dog…and I mean sick…I was partially paralyzed and had much difficulty breathing.  I remember my head swirling round and round and I was so nauseated I just wanted to vomit but couldn’t.  I couldn’t even get out of the bed to call 911 so I just laid there and prayed.  I missed 3 weeks of work and they told me then to be very careful of any vaccines I take.

That was one of the scariest times of my life…not knowing if someone was going to find me dead in my bed hours or days later.  I lived in GA at the time and had been there a very short time so I didn’t know anyone but co-workers.  All my family lived in OH.  Cell phones weren’t a thing back then so I was basically alone.

So yes, since that time, I have been very leery of any medicine regardless if it is a pill or injection.  I have been healthy all of my life so the only medication that I have ever been prescribed was BCP and that was way back when 🙂  Six weeks before my LEMS symptoms came on, I was put on Lipitor for elevated cholesterol.  I argued with my doctor about it and suggested non-statin meds, but he told me that was like taking a knife to a gun fight.  He begged me to try it for 2 months.  Against my better judgment, I did.

Now, they have said that the statin medication is very most likely to have triggered my autoimmune disease.  I wonder where I would be right now had I stuck to my guns.  I guess I’ll never know.  But, from now on….I will not take anything without doing significant research and weighing the results for my own personal history.

[Mary Hudak-Collins]

My entire family had Covid in Dec 2019/Jan 2020 back when it all started.  At that time, no  one quite knew what it was so our 8 weeks of misery was diagnosed as “Severe Bronchitis”.  When information began to come out, I did massive research regarding this virus.  I’m unable to take the flu shot so being offered another vaccine for a similar virus was not enticing to me or anyone in my family.  I have not had the flu since I was in my late teens, my husband and I have been married 29 years and I’ve never seen him have the flu, and my children, ages 24 and 25 yrs, have never had the flu.  We are all on a strict vitamin regimen, with special attention paid to vitamin D3 (since LEMS patients do show low Vit D levels and new research is showing that increased Vit D3 levels are related to decreased Covid symptoms).

Once I was diagnosed with LEMS in March of 2021, I kept a close eye on the VAERS system for post-vaccine adverse affects.  Of course, I was more interested in the neuromuscular side effects having just been diagnosed with a neuromuscular syndrome.  I react negatively to most medicines/injections, so any side effect sent up red flags in my head.  I carefully listened to both sides of the arguments for getting the vaccine and opted out.

Fast forward to August.  My son came home from SC and got sick the 2nd day of being home.  Yep!  He had Covid.  Then my husband got it, and then my daughter.  At the sign of the first symptom, we began home treatment.  My son’s lasted 2 weeks.  My husband (69 years old) lasted 1 week, and my daughter (numerous autoimmune diseases) lasted 5 days.  I do have an O2 sat meter and kept a close eye on their O2 levels which never went below 91%.  Surprisingly to me, I didn’t get sick this time around and was grateful.

I am happy to hear that those in this forum who have been vaccinated have not experienced any major issues but for me, I’m not willing to take a chance with a vaccine that I cannot be told what any long term effects it has.  I know we all have to make that choice for ourselves and I’m not one for condemning anyone for the choice they make.  I have seen so much division between families, friends, co-workers, etc. over this vaccine that it saddens my heart.  I have been called selfish, uneducated (have a BSN), white-privileged, and the list goes on and on to the point of not even wanting to be around people.

I regress and apologize.  I just wanted to share the other side of the coin from someone who chose to forego the vaccine and share an article that I found to be a very interesting read.

https://n.neurology.org/content/97/15/720

 

[Mary Hudak-Collins]

I was diagnosed with LEMS in March.  I talked with my docs about doing CT/PET scans.  They were ok with ordering the first CT and PET scan but the next scans took me 5 months to get them ordered.

In October (19th), my CT scan showed a 1.5 cm nodule on my thyroid.  Apparently, in May, the report showed a low-attenuation nodule but nothing was mentioned to me.  Nov. 1st, I had an US of my thyroid and the nodule measure 2.2 cm and was solid.  On Nov 9th, I had a needle biopsy which showed benign follicular nodule with acute and chronic inflammation.

Once I found out that I had a nodule, I insisted on a PET scan.  The docs were hesitant because the CT scan was clear for any cancers but they ordered it and I just had it on Dec. 2.  So now…I await those results.  I don’t “feel” like they will see anything, but it’s better to have it done and “know” that there is nothing there.  It will also be interesting to see if, and how much, the nodule has grown in a month.

[Mary Hudak-Collins]

Ashley,

When I was first diagnosed, it was for MG.  I didn’t tolerate Mestinon so I was then placed on Prednisone with minimal relief.  My neuro added Cellcept 500 mg each day, gradually increasing to 2000 mg.  When I reached 1500 mg/day, I couldn’t tolerate (severe nausea and dizziness)  it so we backed down to 1000 mg.  Once we knew that I would be adding Firdapse to my regimen, we weaned off the Prednisone.

I take the Cellcept in the morning and evening now along with Firdapse every 4 hrs round the clock.  I can tell a significant difference between when I take the two together and when I’m only taking the Firdapse.  I do much better with both of them and wish I could take more of the Cellcept.  I wouldn’t be searching for something else to add to my regimen to decrease my symptoms (limitations).

As the article stated, blood tests are needed to make sure blood counts don’t drop and mine have always come back normal.  My neuro advised me to stay out of the sun without a good sunscreen because the Cellcept made me prone to skin cancers.  But, anyone with LEMS knows that you probably aren’t going to do well going out for a day in the sun/heat anyway 🙂

For me, Cellcept gives me several hours of “good” so the risks are worth it to me but each person who is presented with the option of that medicine has to make that decision for him/herself.

[Mary Hudak-Collins]

I’d have to say my reaction to my diagnosis was one of expectation. They had already tested for every other syndrome/disease besides LEMS and everything had been negative. I asked my PCP if they had tested for LEMS and he had informed me that they had not. When I saw my new Neuro, I asked him if I should be tested for LEMS and he didn’t think that was what I had. Apparently, he gave it some thought because when I went for my blood counts 2 weeks later (because I’m on Cellcept), he added a VGCC antibody test.
When my results came back positive, I wasn’t really surprised…I sort of expected it to the point that I had begun to do some deep research into it. But I did feel a sense of relief in the fact that seeing it in black and white and now knowing what was wrong, we could focus on what could be done to help me.
Also, I felt relief knowing that I wasn’t crazy! You know that something is seriously wrong but when test after test comes back negative and so much time has passed, you can go to a place that even you begin to question if it’s all in your head…or at least I did for a time.

[Mary Hudak-Collins]

Oooh, I like that! When I got my first prescription to Firdapse, they sent me the “My ID” bracelet. If you just want your meds in info, it doesn’t cost anything to use. But in order to put anything substantial, there is a subscription fee.
Where did you get that ID? It looks like it holds a lot of information. Thanks for sharing!

[Mary Hudak-Collins]

Ashley, I hate that you are going through some rough patches in your life right now and it helps to share it with other like-minded folks. For the last 6 months, I have spent most of my time trying to get adjusted on meds so that I could be able to just do stuff…even as simple as carrying my own cup of coffee from my kitchen to my dining room table. Before that I was on no medication and spent my time either sitting in a chair or in bed. Once our summer began, I realized very quickly that I couldn’t be in the heat because it was paralyzing to me. I felt like a prisoner in my own home. I’m very blessed though because I have a huge support system from my church and my wonderful husband and adult children.
Now that I’m in my second month of Firdapse, I can tolerate the heat a little better and the last 2 days have been very good for me. It’s exciting to be able to get back to a little of what I could do before all of this happened.
If I could say what has helped me keep my sanity in all of this (LEMS and Covid up and down rollercoaster) is my faith and keeping my expectations realistic. I can’t say that I get depressed, but I do get discouraged sometimes. I look at the covid situation and potential lockdowns the same as I look at my LEMS…I take one day at a time and do what I can. I don’t make plans because I don’t know what tomorrow is going to bring. I try to enjoy every minute of each day. I do what I know I can do for the sense of accomplishment but I also try to not stagnate. I make every effort to push myself to do what I wasn’t able to do yesterday. If I’m successful, that’s great! If not, I’ll try again tomorrow.
Ashley, I don’t know if you are a woman of faith, but It has been my stronghold through all of this. For a long time, my eyes were messed up which interfered with reading and doing studies. For me, that was my most distressing symptom. With my most recent increase in dosage, my eyes have begun to improve and that to me is a true blessing. I am able to read again and do daily devotionals and studies. I don’t fear the unknown. I know that God’s got this! Each of us has to find our own way of dealing with everything that is going on in our life and in the world around us. I pray that you stay positive and keep putting one foot in front of the other. Don’t allow all this gunk to get you down.

[Mary Hudak-Collins]

I still have no desire to have this injection.  Regardless of being approved, long term effects have not been determined because it has not been around long enough.  People who are vaccinated are still suffering death.  I know of many throughout my circle of family and friends.  Just this morning, my husband’s cousin’s husband passed away.  Fully vaxed with no pre-existing disease/syndromes.  Being highly sensitive to medications, and knowing that once the vax is given there is no going back if you have a reaction to it, I’m being very careful.  I’m not lazy where my health is concerned.  There are many regimes of preventative care out there available  which I follow.  I have been subjected to quarantine 8 times in the last year because of someone in my family being around someone who tested positive.  I don’t really go out any more than necessary and stay away from large crowds.  But at this point, I don’t feel safe with this vaccine.  Just FYI, I am not an anti-vaxer.

[Mary Hudak-Collins]

I was originally on Cellcept and Prednisone before I was diagnosed with LEMS.  They thought I had Myesthenia Gravis.  I weaned off Prednisone shortly after starting Firdapse.  Currently I am on Cellcept 500 mg twice a day and Firdapse 10 mg four times a day.  My doctor hopes to wean me off of Cellcept at some point, when he is sure the Firdapse is carrying the weight of my symptoms.

Before I started Firdapse, the Cellcept and Prednisone did help to some degree, but didn’t make such a significant difference.  It did decrease the severity of my symptoms but not to the point that I was able to do much.  Before Cellcept and Prednisone, they put me on Mestinon (Pyridostigmine) and that seemed to help quite a bit but after 6 days I stopped taking it because it made me sooooo sick that I was spending my entire day in bed, unable to eat.

I’m 60 yrs old and the only medical history I have is 2 C-sxn and a Cholecystectomy.  I have never really been sick other than maybe a brief head-cold.  I began having symptoms on Aug 1, 2020.  Diagnosed with Myesthenia Gravis Oct. 2020.  Requested to be seen by out-of-state Neuro.  Diagnosed with LEMS March 2021.

[Mary Hudak-Collins]

I saw that article as well.  It was interesting.  I know that out of every test they ran on me (almost $10K in labs), the only one I tested positive for was the VGCC antibody (which was done almost 6 mths later at my suggestion).  And without looking through each lab, the only thing I’m sure that they were looking at were autoimmune diseases.

Let me digress for a short story.  About a month ago, a dear friend of mine lost her father-in-law.  He had symptoms like we all do but no one ever tested him for LEMS.  He started having a difficult time breathing and after having a CT, they found he had a tumor in his lungs.  Of course, they sent him to an oncologist.  Here is where it gets interesting.  Apparently, this doc told my friend that he had LEMS and wish that he had been referred to her earlier.

But, this is my point…most oncologist will not see a patient until a tumor presents in the body!  And I’m not sure any tests are run for other antibodies that may be related to LEMS, such as CA.  I am very blessed to have a PCP and a neurologist, that although they had never had a LEMS patient before, they have been great in exploring the disease, treatments, and prognosis along side of me and they have taken my input on how I want my treatment to go.  Only one difference and that is on the CT/PET scans.  I have read articles that encourage scans every 3 months for first 2 years and then every 6 months for 3 years, which is what I want done for myself.   My current physicians feels 1 times a year is plenty.  I don’t want to be a statistic!  I have called numerous huge oncology centers that list LEMS on their website, but to my surprise I found out that most of them weren’t even familiar with LEMS.  I called the oncologist that my friend’s father-in-law saw and explained that I have been diagnosed with LEMS and wanted to know if that doctor would see me even though my most recent scans were clean.  Within an hour, the office called back and they are scheduling me an appointment.

I believe that every patient that is diagnosed with LEMS should be seeing an oncologist along side their other doctors, considering the risk of CA with this diagnosis.

[Mary Hudak-Collins]

Just FYI…latest PET scan results clear!  So, it has been almost 1 1/2 yrs since symptoms presented so I’m doing good on the ‘tumor’ front I guess 🙂

[Mary Hudak-Collins]

Price, I am so sorry to hear that happened to you.  Mine also was a low dose.  I am thankful though…that all (and I say that very lightly) that happened was I got LEMS.  My best friend’s co-worker had been on Lipitor for about 3 weeks and came into work with slurred speech and difficulty working (they worked at a mental counseling clinic).  The employees thought she was drunk and she couldn’t speak well enough to tell them something was wrong.  Long story short, she ended up in the hospital and after 8 days she passed away.  The tested everything on her EXCEPT for LEMS.  They truly believed that she had a stroke.

That is why I am so adamant about educated the healthcare field in this area about LEMS, with particular focus on symptoms.  At this point, I am the first one in this area with this diagnosis and they are all learning along the way, sometimes at my cost.  But hopefully in the future, if someone presents with similar symptoms, maybe LEMS will be in the forefront of their mind and they will pay more attention to it.  It all starts with the PCP.  If they don’t recognize it, then no referral to a neuro (that has worked with LEMS patients) will be made.  I believe that early diagnosis and treatment is imperative to getting the symptoms under control.

 

[Mary Hudak-Collins]

I’m very happy to see that continued research is being done. My husband and I have always grown herbs for different ailments. Recently, he ordered me a book about foods and autoimmune diseases. It was part of a Herbal and Medicinal Preparedness Package that he purchased. If there is anything interesting, I’ll be happy to share 🙂

[Mary Hudak-Collins]

This article gave me much hope for my daughter. She just turned 24 yrs old. She was diagnosed with Celiac in 2008 after many doctors appointments and having to go out of state to get her tested correctly. All the docs around here said she just didn’t want to go to school! Crazy, right? They said the same thing a few years ago when she was at death’s door in the hospital for a week. The nurses kept saying it was her gallbladder but the U/S showed no abnormalities. On her day of discharge a doc walked in and asked us if she had had a gallbladder function test, which she hadn’t. The doc scheduled it outpatient for that following Tuesday and it showed a “dead” gallbladder. On Friday, she was having it removed.
She also has Autoimmune Cirrhosis and is taking Ursodiol which is keeping it at bay. At 21 yrs old, she had a hysterectomy because of constant bleeding and endometriosis. Unfortunately, before we finally saw a doc who would perform a hysto on someone her age the endometriosis had spread and was on her liver, spleen, and ureters. It’s just been a mess for her. From the extensive endometriosis, she developed Interstitial Hemorrhagic Cystitis in which she has to have her bladder “blown up” every 3 months under anesthesia for the rest of her life. She has been doing this now for 5 years.
Most recently, she had an EGD and was diagnosed with Gastroparesis. So, now we are reviewing diet changes. It makes it hard when she can eat certain things with the bladder issues, but can’t because of her Celiac, or what she should be eating for Celiac, she shouldn’t have because of the bladder.
My daughter has an arm’s length of diagnoses and is a challenge for any physician. She has Autism and is right on the line of knowing enough to know she is different, but yet she is unable to stick up for herself. Unfortunately, she will always need an advocate to make sure she is taken care of correctly. I guess this is why I am so assertive when dealing with physicians because over the years I have learned that if you are passive and just take their word for Gospel, then you become a statistic. I believe that we are all responsible for researching our own personal health issues and discussing what we find with our physician(s).

[Mary Hudak-Collins]

yes, I agree to some point that we need to follow the guidance of our neurologist…I also believe that we are our very best patient advocate.  I am very verbal with my neuro when it comes to my health.  I don’t let grass grow under my feet.  I always tell people that if they don’t feel they are getting the treatment they feel is necessary or their doc doesn’t listen to them, then look for one that will.  Had I just sat back and listened to the first neuro I saw, I would still be laying in bed waiting for “statin induced myopathy” symptoms to go away.  The neuro I have now is willing to listen, negotiate, and work out a plan together.  He reviews the research I send him and we go from there.  He’s great!  He’s humble and willing to admit when he wasn’t aware of something.  I am truly blessed to have found him.

[Mary Hudak-Collins]

Having been a healthcare professional all my adult life, I’m familiar with most medicines and side effects.  If I’m not, I am very proficient in doing my research before making any decisions.  I didn’t particularly care for being on any steroid, but it did help my issues with my eyes.  Since being off of it, the droopy lid and blurred vision is back…not necessarily as bad as it began but bad enough to keep me from driving.

I do understand that I can increase my dosage of Firdapse, with the max being 80 mg/day.  I’m not satisfied at 40 mg/day but my doctor wants to slowly increase…month by month…because of my hypersensitivity to medications.

I read testimonies where people have returned to work and their ADL’s are minimally affected after starting on Firdapse.  I’m patiently awaiting that point in time when I will be able to say the same 🙂

[Mary Hudak-Collins]

Currently, I have no information regarding this but will be happy to share once I see and talk with her (the oncologist).

[Mary Hudak-Collins]

Good afternoon all!  The Cellcept with Prednisone did a pretty good job…gave me the opportunity to be out of bed and wheelchair and allowed me to do 1-2 light tasks about 3 times a week.  I still had a lot of symptom issues, but the combination helped some.  When I started the Firdapse, my neuro weaned me off Prednisone but wanted to keep me on the Cellcept until I was at a point I could also wean off it.  I’m just now in my second month of Firdapse and am at 40 mg/day.  We have that spread out throughout the day at 4x/day.  I’m not quite where I would like to be at yet so I’m just taking one day at a time.  We’ll see how next month goes for me.  But yes, the Cellcept/Prednisone combo helped but I had to be on a higher dose of Prednisone so that wasn’t ideal.

[Mary Hudak-Collins]

I agree that an oncologist may not be necessary, but I am interested in seeing one for two reasons…1) My neurologist wants to leave the scheduling of scans up to my PCP and neither of them feel a scan is needed other than 6 mths or a year.  I’m not satisfied with that at this time.  2) I have been told that the particular oncologist I’m going to see has recommended LEMS patients take Keytruda as a precautionary measure.

I don’t know enough about the Cancer side of this disease yet, nor have I seen any research done regarding meds taken to prevent tumors.  I’m awaiting my visit with her so I can get all the information together.  At least I know that she will order a scan every 3 months for the first couple of years.