Tagged: Cancer, coping with lems, lambert eaton syndrome, Lambert- Eaton Myasthenic Syndrome, LEMS treatment, life with lambert eaton syndrome, living with LEMS, medical marijuana, Side effects, treatment
July 20, 2022 at 9:43 am #19997
This week, I want to talk about a topic that is a little “taboo” for some.
I’m a big fan of using CBD daily, as it helps me with pain, my mood, and to get a good night’s sleep.
With that being said, today I want to talk about medical marijuana (MMJ), which is not the same as CBD although they are both derived from hemp.
If interested, you can read about the differences here.
Recently, I’ve seen a lot of articles about using MMJ for chronic illness, which boasts a lot of positives.
Is MMJ included in your treatment plan?
Will your doctor approve you to buy MMJ?
If you’ve used MMJ, what symptoms does it help with?
July 22, 2022 at 2:52 pm #20099Alan StoneParticipant
My neighbor, a certified psychoanalyst, advocates for CBD for pain and sleep issues, but I have not tried it yet.
July 23, 2022 at 8:05 am #20100
@alan-stone Alan, interesting that you have talked with a psychoanalyst about this. There is plenty of anecdotal evidence out there regarding CBD. I read and record audio tracks for a much larger patient population, Multiple Sclerosis, and there is much anecdotal evidence within their population of its effectiveness as well. Studies have been done, but not extensively.
For me, I’m currently using some gummies which contain 400 MG CBD, 200 MG CBN, and 2.5 MG melatonin, a natural hormone. They’ve been the most effective at keeping my nervous system calm and helpful with sleep.
As with everything, it’s best to discuss all this with your healthcare team before starting. I’ve found my doctors very open to these alternative medicine approaches.
July 28, 2022 at 2:17 am #20103Brian HerresParticipant
Ive been soley using Medical Cannabis here in Germany to treat my LEMS for about a year and a half now!
I had Seizures from Firdapse and also reacted badly to IVIG.
My insurance pays for it and im doing pretty good 🙂
Ive been pretty open about it in our Facebook groups.
Certain types of cannabis are really good at treating alot of autoimmune diseases.
If your at wits end and nothing is working its worth a try.
I use a Sativa sparingly in the daytime and Indica before naps and bed time.
It was a slow process to heal and it took me about 3 months of daily – nightly use to get up to a relative healthy level and yes i get flares but nothing severe or long lasting.
take care Sincerely Brian
July 28, 2022 at 8:12 am #20105
It’s unfortunate that Firdapse is contraindicated for you due to seizures, and that IVIG was an issue for you as well.
I’ve found a combination of CBD, CBN, and melatonin (a natural hormone), has been very effective, taken at bedtime, at calming my autonomic nervous system and provide more restful sleep.
I’m not aware of any studies showing medical cannabis has an effect at the neuromuscular junction, directly related to LEMS symptoms.
August 10, 2022 at 2:00 am #20135Brian HerresParticipant
Yes no studies as of yet and that was a big hurdle for me with my insurance company. It works great for me and has given me a huge boost in my quality of life Physically and emotionally! Plenty of info online about acytlcholine inhibitors and so forth online also good info regarding cannabis and treatment for ALS and MS!
August 10, 2022 at 8:27 am #20136
I’ve read a number of pieces on cannabis use with MS patients. All very positive.
August 5, 2022 at 3:02 pm #20126DCarpenterParticipant
I asked my neurologist and primary care physician about using CBD and neither thought it was a good idea because of the lack of research on the effects.
August 10, 2022 at 9:31 am #20137
Wow! So interesting that your insurance pays for MM. I’m not sure if insurances here will cover the cost but I know it can be prescribed.
I’m so glad it works for you, especially since Firdapse isn’t an option for you.
Can you tell us more about the process of what you needed to do to get it approved?
August 10, 2022 at 9:32 am #20138
August 10, 2022 at 9:32 am #20139
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