[RDT]

Oops I copied & pasted mayo findings which distorted comment. Tried to edit/delete, but wouldn’t let me. So here’s what I was trying to write now without the copy & paste error portion. Lol

 

 

 
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>I have both types!  N & P/Q…</p>
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>my panels like price are always sent to mayo and are monitored yearly. Apparently my NMN said the levels can change depending on how aggressive your LEMS is.</p>
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>what’s interesting in my case is I just completed chemotherapy and now my N type levels are normal but my P/Q levels have doubled. Went from 0.07 to 1.15…Mayo lab report said, “Current result modestly higher. * This profile, in the proper clinical context, would support autoimmune encephalopathy. *”</p>
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open sans’; font-size: 13px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%;”>so apparently I was told rising levels of our types can lead to active autoimmune encephalitis</p>

[RDT]

I did a trial of IV Rituximab last year (2019). I personally felt 100x worse than my baseline and couldn’t continue with that therapy at all but I also have very complex issues in addition to my aggressive form of LEMS, so that might play a role.

I’ve tried several immunosuppressive medications over the years and I’d say for me personally the one I had most benefit from was hydroxychloroquine (Plaquenil). I had to stop it (2020) while I underwent chemotherapy, but now that I just completed chemo, it’s been very difficult to get back on it since pharmacies in my area are refusing to fill it out of fear it’ll be used to treat covid. Very sad 😢…. I’ll keep trying though….

keep us posted if you do get to try it! 👍🏼

[RDT]

For me personally, giving up dairy several years ago was huge. I have autoimmune arthritis and all my joint swelling went away within a week of giving up diary!

If you love milk then definitely try OAT MILK! It was a huge game changer for me taste wise. After years of drinking but milks, I found it Closest to diary taste in my humble opinion…

👍🏼😇

[RDT]

I have both types! 😢 N & P/Q…

my panels like price are always sent to mayo and are monitored yearly. Apparently my NMN said the levels can change depending on how aggressive your LEMS is.

what’s interesting in my case is I just completed chemotherapy and now my N type levels are normal but my P/Q levels have doubled. Went from 0.07 to 1.15…🙀 Mayo lab report said, “<span style=”caret-color: #2e3b44; color: #2e3b44; font-family: Arial, sans-serif; font-size: 17.33333396911621px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: #f8f8f8;”>Current result modestly higher. * This profile, in the</span><span style=”caret-color: #2e3b44; color: #2e3b44; font-family: Arial, sans-serif; font-size: 17.33333396911621px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: #f8f8f8;”> </span><span style=”caret-color: #2e3b44; color: #2e3b44; font-family: Arial, sans-serif; font-size: 17.33333396911621px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: #f8f8f8;”>proper clinical context, would support autoimmune </span><span style=”caret-color: #2e3b44; color: #2e3b44; font-family: Arial, sans-serif; font-size: 17.33333396911621px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: #f8f8f8;”>encephalopathy. * “</span>

so apparently I was told rising levels of our types can lead to active autoimmune encephalitis!

[RDT]

I’ve been on mestinon since diagnosis in 2017. For me personally it does nothing for my muscle weakness or muscle spasms, but has been a blessing for my POTS which can be one of the LEMS dysautonomia manifestations. Helps with my tachycardia and prevents me from passing out.

My only complaint I have is the tablet texture/size. When my LEMS worsened and I developed vocal cord atrophy and dysphagia (swallowing difficulty), I had a hard time getting these pills down. I switched to the liquid form but it’s crazy expensive $$$ like $1,000 per bottle.

But other than that, I didn’t experience any side effects from it at all. 👍🏼

[RDT]

I use compression stockings anytime I leave my house. But when home & sometimes when out, I get severe leg weakness with horrendous cramping & spasms. Then I must wear a calf support splints.

I also have weakness and spasms in my arms so at times I also use arm compression sleeves which really help. I also have weakness to my hands & wrists, so at times I must use wrist & hand support splints similar to those given whom have carpal tunnel. Though bulky, they’re very helpful.

I must use a cane to walk short distances, but longer distances I have to use a rolling walker that converts to a wheelchair when I can’t go any further. So definitely my cane is the one thing that I can’t live without.

Standing is extremely difficult for me as well, so fortunately my shower has a built in seat that allows me to shower easily and I have a separate bathtub that I can swing my feat into. But most of my activities of daily living are done either seated or laying down.

[RDT]

My sister whom has MS owns several different cooling vests that she finds very helpful. She did send me one to try out, but not the actual cold inserts, so I improvised what I could. Found it a bit heavy for me from the cold packs I inserted, but my sister said the cold packs actually designed for the vests are much more lightweight, So maybe worth a try???

[RDT]

@pricewool

wow, what a journey…a true testament to how strong you are and quite the survivor….so glad you’re getting some relief after all these years!!

[RDT]

@ashleygregory757

nope I just deal with the hotness, sweatiness and itching. for me I prefer to deal with that then the POTs and quicker extreme muscle cramping. One thing I do though is have various sizes/compression tightness. So for hotter days, I use a lighter compression like 8-10 mm vs 20-30 mm, that helps a tiny bit….

[RDT]

@pricewool

not so bad for me compared to others. I started off with severe dysautonomia symptoms & bad POTs that eventually led to muscle weakness & muscle cramping and eventually LEMS diagnosis.

For me It took about 1-1.5 yrs before being diagnosed. But again I traveled to many different states and saw many doctors to finally get answers when I wasn’t getting them locally in my hometown. I think that was key for me. Someone on this group I think said they were diagnosed after 8 yrs. that’s so crazy. But happy at least all here received a diagnosis.

[RDT]

@pricewool

My infusion center was also inside the hospital as well. The PA also came to eval me but sadly continued on and just kept upping the pre-meds.

The concept and usage of SCIG itself isn’t brand new to the medical arena since one of the articles I quoted here where they encourage scig use, was published back in 2008. I also found research articles about scig even earlier than that.

What I do think is new is that just recently  more providers (doctors) are looking at the data and patient experiences and realizing scig may be a better alternative for those who keep having severe reactions to IVIG and have recently in the last years or so using it more and prescribing it more within the Ig community.

So what’s new in my opinion is more doctors are prescribing it more now than in the past.

Still not sure if I will try or not. Still giving it much thought, prayer and consideration.  I’m still very concerned over the potential for passing on unwanted antibodies and infectious agent like I experienced during my first time ivig administration.

[RDT]

I thought I’d share an extremely important medical event that just happened to me that I think can be extremely relative to this thread!

When I was first diagnosed with LEMS in 2017, my situation was quite critical so we proceeded directly with IVIG. Unfortunately I had serious side effects even from day one, but sadly infusion center just kept increasing pre-meds and continued on with the 5 day loading dose despite serious side effects un-resolving with pre-meds. all 5 days I had worsening reactions like Rash, Migraines, Cough, Vomiting, lethargy and even elevated temperature. I Finished the course on a Friday and by Saturday night was in ER with serious aseptic meningitis confirmed by spinal tap.

It took me close to a year to resolve or get better from the aseptic meningitis. I had to go through several spinal patches, migraine infusion, cranial blocks and lots more. I vowed, I would never do IVIG again since the recovery from the aseptic Meningitis was so arduous and long!

Fast forward to earlier this month when I had a consult with a respected and well published Immunologist. Earlier this year I had a very risky bout with Systemic Bacteremia but caught it just in time before reaching Septicemia. I stumped the hospital Infectious Disease doctors with these quite dangerous systemic and bacterial infections so I  was referred to the Immunologist.

Well I just found out  2 weeks ago that labs and medical history show I have Primary Immune deficiency! Specifically, CVID or Common Variable Immune Deficiency and IgA deficiency. Also HAE or hereditary angioedema but this is not relevant to the post.

Now what makes my new diagnosis of CVID and Selective IgA deficiency pertinent to this post, is that patients whom have these diagnoses will usually or have a extremely high occurrence of developing serious reactions from IVIG! for CVID it’s the fact that these patient complement levels and particularly their low C1 levels leaves them extremely vulnerable to developing serious IVIG reactions.

I had absolutely no idea what so ever that low complement levels and C1 levels make you very vulnerable to IVIG reactions. In fact, if you have a diagnosis of Selective IgA deficiency ALL IVIG manufacturers’ list in their package insert that Selective IgA deficiency is actually CONTRAINDICATED for their product use! check out your IVIG packaging under contraindications to see!

So anyone of us that continually gets serious reactions from their IVIG even despite changing brands, and has a history of infections, really needs to see an Immunologist to get tested for these conditions or other Primary Immune Deficiency.

After my mind was blown with this new information, I was then told by the Immunologist whom had participated in many research studies for these individuals, there is another possible solution….

Apparently for people with these immune conditions, they probably can not move forward with the Intravenous route.  However, new  research has shown that there’s a potential secondary option of utilizing lower percentage of Ig and/or through the subcutaneous route instead!

Apparently lowered percentage of Ig  and Ig through the SC or SCIG route has been studied and shown to drastically not only reduce side effects but lessen the risk of serious reactions and even aseptic meningitis!

But as a former nurse and research scientist, don’t just take my word for it, I’m adding some supporting research to prove this point!

1) This article goes more into detail regarding Selective IgA deficiency and ends that the SCIG route can be administered more safely in past anaphylactic IVIG patients:

http://www.igliving.com/magazine/articles/IGL_2008-08_AR_IgA-Content-in-IVIG-Products.pdf

 

2) This abstract briefly mentions that CVID patients who cannot tolerate IVIG can switch to subcutaneous immunoglobulin (SCIG), which reduces adverse events. The reference articles as well are also quite eye opening:

https://www.annallergy.org/article/S1081-1206(15)00311-7/references

 

3) This recent 2019 article explains how reducing the percentage of Ig has been helpful in adverse reactions of Immune deficiency patients particularly those with low C1 levels. It also provides the directions and products to use if unwilling to switch to SCIG that has the least adverse reactions. It ultimately points too that even the suggested use of the lowered dose IVIG here, that SCIG ultimately remains a big valid option for those most affected by IVIG side effects…

https://www.longdom.org/open-access/observational-study-of-intravenous-immunoglobulin-5-for-alleviating-adverse-drug-reactions-in-primary-immunodeficiency-d.pdf

 

I could provide so many more articles, but these are just a few to learn from. I think this information is so mind blowing for those that had serious IVIG complications and reassurance that there may be alternate possibilities. I’m still weighing very carefully if I will do the SCIG or not, but so happy I have choices now.

Hoping this info. may help another one of us out there and prevent them from going through what I went through and help lessen any side effects …

Rebecca

[RDT]

Diagnosed @ age 40

[RDT]

Compression stockings really help me not only with my POTS part of my dysautonomia but with weakness and calf cramping.

I never go out without them!

[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

[RDT]

Eye Doctor thought I had negative pressure glaucoma but further testing turned out to be ocular neuropathy in the optic nerve from my autoimmune illness.

But there is medical research that ocular (eye) weakness and it’s symptoms can be signs of LEMS.

[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. 😿

[RDT]

Only met online like here. Still haven’t met another LEMS sufferer face/ 1:1 yet ! Crazy….

[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 🙁

[RDT]

<p style=”text-align: left;”>I’ve tried everything listed in this article and nothing seems to work.</p>
I have a rare version of LEMS. It originates in the spinal cord and brain stem. So only way for it to come back positive is to perform either single fiber EMG in face & eye or higher voltage regular emg around neck & shoulders. Majority of NM neurologist don’t even know about this form or these emg techniques. Had to travel several states away to find an experienced NM Neuro knowledgeable on this.

I have both autoimmune & paraneoplastic forms.

I have terrible neuropathy throughout my whole body from all 4 extremities to my eyes,  inner ears and even throat!

I also get terrible fasciculations, muscle spasms and severe cramping like horrible Charlie Horse cramping. Was wondering if any LEMS patients here get this as well and what they do for it other than what’s recommended in the linked article?

I do have both a TENS unit & PEMF device that I use with minimal relief.

My hematologist has recommended as last course option to try Ketamine Infusion Therapy for the neuropathic pain. Hopefully will be doing that soon!

Has anyone tried Ketamine Infusion Therapy for Chronic pain? It’s quite expensive but I’m willing to try anything for a better quality of life at this point.

Currently undergoing chemotherapy and it’s drastically either reduced or normalized  my LEMS labs but I’m still very much experiencing all the LEMS symptoms. But I guess it takes longer than 3 months of treatment.

I’d love to hear everyone’s feedback or if experiencing anything similar to me??

Thanks so much!!🙏🏼😇

[RDT]

Since I also have arthritis, eliminating diary was a huge game changer for me. Definitely reduced joint pains & joint inflammation for me.

[RDT]

I’ve had 4 televisit so far and although I encountered a few computer glitches it’s the best thing ever. Unless you need to be physically examined I think it’s a wonderful option! I still need to go into the hospital every week for my chemo treatment, but will always opt for a televisit where possible.

I’m hoping it can continue after the covid-19 is controlled/ distancing relaxed.

I have major mobility issues and unable to walk without assistive devices and with my severe fatigue, muscle weakness & muscle cramps, it takes me at least 2 bed bound days to recover from any outing. So this option has been quite a blessing for me and I can even schedule more than one appointment in a given week since I have zero downtime like before for in office visits. Also being on chemo treatments right now is also way more of a protection for me even beyond covid-19 precautions.

So definitely PRO televisits for my personal circumstances!👍🏼😇

[RDT]

Since I’m currently undergoing chemotherapy and have several autoimmune diseases, I definitely mask & glove up every time I leave my home.

I completely understand those that don’t want to mask up, however we still need to follow a businesses policies. It used to be, “No Shirt,No Shoes, No Service”. Nowadays that now includes masks.

For me personally it wouldn’t be worth it to fight with a store worker about hipaa/ada rights to someone probably making minimum wage and struggling to keep their jobs.

It would be a different story if a person had NO access to obtain these store items and unable to get them without wearing a mask.

However, that’s not circumstances we are in right now. We have options to perform online shopping even for groceries. There’s also online ordering & curbside car pickup with no mask required. If a store you want to purchase from doesn’t have these options, there’s always instacart and services that will have people go out and personally shop for you whatever you may need. If all else fails hopefully a person has family, friends, acquaintances, neighbors and even Good Samaritans that are offering their shopping services even for free to pickup your items for you that ARE willing to mask up.

So people who don’t want to wear masks have other options in my humble opinion.

I think the real issue will not be about their rights to not wear masks but the possibility of forced mass covid-19 vaccination if and when it comes out. That I have a real issue with and I think that might what we may have to face in the future. I’d rather invest my efforts in fighting that then fighting a poor worker that’s just trying to follow their store policy. Just my 2¢….

[RDT]

I’m not doing Ig therapy and therefore continue to get tested regularly to see if the treatments I am doing are helpful in being down antibody levels.