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(LEMS Disease) LAM Eaton Myasthenic Syndrome

twheeler
Posts: 5
Joined: Apr 2004

Does anyone have this LEMS that is associated with small cell lung cancer? Looking for someone who is experiencing this so I can help my mother.

Yammi
Posts: 6
Joined: Apr 2004

Hi, I have a friend who was diagnosed with LEMS a few months ago. I found some information for her and would like to share it with you. Please let me know if that's helpful...Good luck!

What is Lambert-Eaton Myasthenic Syndrome?
Lambert-Eaton myasthenic syndrome (LEMS) is a disorder of the neuromuscular junction-the site where nerve cells meet muscle cells and help activate the muscles. It is caused by a disruption of electrical impulses between these nerve and muscle cells. LEMS is an autoimmune condition; in such disorders the immune system, which normally protects the body from foreign organisms, mistakenly attacks the body¡¯s own tissues. The disruption of electrical impulses is associated with antibodies produced as a consequence of this autoimmunity. Symptoms include muscle weakness, a tingling sensation in the affected areas, fatigue, and dry mouth. LEMS is closely associated with cancer, in particular small cell lung cancer. More than half the individuals diagnosed with LEMS also develop small cell lung cancer. LEMS may appear up to 3 years before cancer is diagnosed.

Is there any treatment?
There is no cure for LEMS. Treatment is directed at decreasing the autoimmune response (through the use of steroids, plasmapheresis, or high-dose intravenous immunoglobulin) or improving the transmission of the disrupted electrical impulses by giving drugs such as di-amino pyridine or pyridostigmine bromide (Mestinon). For patients with small cell lung cancer, treatment of the cancer is the first priority.

What is the prognosis?
The prognosis for individuals with LEMS varies. Those with LEMS not associated with malignancy have a benign overall prognosis. Generally the presence of cancer determines the prognosis.

What research is being done?
The NINDS supports research on neuromuscular disorders such as LEMS with the ultimate goal of finding ways to treat, prevent, and cure them.

I provided the link to the website that might be useful to you:
http://www.ninds.nih.gov/health_and_medical/disorders/lambert-eaton.htm#Is_there_any_treatment

Some other information about Small Cell Lung Cancer:
This type of lung cancer accounts for about 20% of all lung cancers.
It starts in the hormonal cells in the lung.
Subtypes of small cell lung cancer include: oat cell or lymphocytic, intermediate, and combined (small cell combined with squamous or adenocarcinoma). Their natural history is virtually identical.
Small cell lung cancers most commonly start in the central part of the chest (95%).

twheeler
Posts: 5
Joined: Apr 2004

THANK YOU! Can you tell me what type of symtoms your friend has. My mother has been going through this for 2 years. It was only 7 months ago they said she has small cell lung cancer. Then identified the LEMS. She is off all medications and went through blood cleansing. She has made it through Chemo with flying colors and now she's trying to regain her strength. People look at her and say she is a very depressed. Her voice is weak, her limbs are weak and she sleeps a lot. She says depression is part of it, but her overall body just feels weak. She feels very alone in this. We offer support, but we will never really know what she is experiencing. Thanks for your help. I hope your friend is coping well with this LEMS.

nevaehdaum's picture
nevaehdaum
Posts: 4
Joined: Jan 2017

Hi!  I'm new here, Happy New Year to you all.  History:  I had two seizures on Oct 14, '15  and saw a neurologist the next month, Nov '15.  Took many blood marker tests, and CTs,MRIs, xrays, PET after a positive blood marker came back for Paraneoplastic Syndrome.  AcHr was .9   and positive ANA.  The PET came back with tonsils lit up but reading stated it was on larynx.  ENT said obviously not larynx and removed my tonsils.  While I was in recovery, they thought I was still out but I clearly saw him hand the tonsils to the nurse and state, "End stage.  Send these separately"   Tonsillectomy was worst thing in my life.  The PNS diag was a year to the day of the tonsilectomy.  I ended up in ICU with swelling that edged on breathing tube, uncontrollable pain and severe dehydration.  10 days later, went to see ENT for results.  He stated no cancer, just irritated.  Didn't see anything on larynx or vocal folds either.  I had no voice for 4 weeks which he said was due to the PNS autoimmune problem.  Oh, and the PNS gave me Encephilitis (Limbic) and I had 16 weeks of 500 mgs of methylprednilisalone IV to reduce the swelling in my brain.  Ataxia, myclonus, tremors, vertigo, word searching and slurred speach, all the fun stuff.  So now fast forward to today.  10 weeks past surgery.  Throat is still very sore.  Scarring all over throat and sides of tongue.  Volcanoe-like lesions the size of pencil erasers on both sides of throat and tongue.  Now dark blue dots all over back of tongue and working their way down both sides toward the tip.  The LEMS, which is a precursor usually to some type of cancer, usually SCLC after 33 years of smoking, 8 years free now, is getting much worse.  Began with pelvic girdle and low back pain. Went to getting up from a chair like an octogenarian and walking like I had a loaded diaper for a few minutes.  Thigh pain and then weakness.  I had another seizure an went to the ER by ambulance.  They said after 30 mgs. valium and speaking with Neuro that it was all PNS related.  Go home and take an asparin.  That was in early Dec.  Neuro moved my appt with him from Nov 8th to Feb 25th 'due to unforseen circumstances', I'm guessing another trip home to Greece to show off his new baby.  No problem but in the meantime the free clinic that I go to said find another Dr., I was becoming too complicated.  I found one and have an appt on Jan 5, '17.   The LEMS since surgery has gone now to my upper arms and shoulders and I can not swallow right.  It all sticks in the back of my throat and despite several swallows, does not go down.  The muscles around my ribs and back feel like I've been lifting weights.  My vision is very blurry and frequently double when reading or watching TV.  Oh, when I went to ICU, they said I had probable pneumonia and treated me for it with Zosyn IV.  The Xray and CT said 'ground glass opacity in upper R lobe and shadow around the Thymus".  Ground glass opacity is usually associated with lung cancer beginnings, right?  Not getting worked up but lungs still crackling (I'm an RN) no one would give me a follow up xray having no PCP on board. (???)  Worst hospital ever.  The Hospitalist had the gall to say upon discharge, "next time call your own Dr. and don't come to our ER".  WHAT????  But I had been on the phone with the surgeon for two days and he said go NOW inthe middle of the night because my throat was swelling shut.  SOooooo  what say ye?  I'm laying here exhausted, can't climb stairs, can't work, throat still hurts.  The lesions feel like I have a throat full of cherry stones.  I've lost 30 pounds, which is no problem, I could stand it but it's way too fast.  Any opinions?  Anyone else pre cancerous LEMS?  I'm spent.

 

nevaehdaum's picture
nevaehdaum
Posts: 4
Joined: Jan 2017

Oh, I'm female, 54 y/o former smoker, drinker and addict.  CLean 8 years now.  Totally!!!  

 

nevaehdaum's picture
nevaehdaum
Posts: 4
Joined: Jan 2017

Woke up this am with my husband's cold.  Noticed the weird moving tingling all over the buttocks and thighs.  Thighs are so weak and knees are shaking upon walking.  Stairs to our bedroom are one step at a time this morning.  I choked my way through a muffin and am also choking on liquids like water and coffee.  Could this cold be straining my lack of immunity and inducing more severe LEMS symptoms?  

 

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