Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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msdoublevision 05/17/2018

Hello all,

I am wondering if anyone has tried CBD for treatment of their ocular mg? If so, how much? How often?

I was first diagnosed with ocular MG at age 29, almost 30 years ago. My double vision, as with many people, will come and go. I have been taking so much medicine for so long, and I can't honestly say that any of it helped, that I have stopped taking all meds. (I've done several years with prednisone--and like everyone else hated the side effects--and I've taken mestinon, aziothioprine, and recently a year of monthly plasmapherisis).

Of course, living with constant double vision is exhausting as you well know. Any suggestions appreciated.

Thanks!

Rhanson 05/27/2018

When no one answers your question, you might try a site search of this website to see what others may have commented in the past

Type this line exactly into your google search line

CBD myasthenia site:www.dailystrength.org (search the whole dailystrength site for the two words CBD and myasthenia)

You might also try hemp oil or other terms

It gives this result (you can click it)
https://www.google.com/search?ei=l6wKW9GXHsuisAW94ITwAg&q=CBD+myasthenia+site%3Awww.dailystrength.org&oq=CBD+myasthenia+site%3Awww.dailystrength.org&gs_l=psy-ab.3...245706.247188.0.248497.4.4.0.0.0.0.256.609.0j3j1.4.0....0...1c.1.64.psy-ab..0.0.0....0.2j0O9FySFJw

Good Luck
Russ

tmarevans 05/27/2018

Sorry I cannot help with your original inquiry. But I was interested in the fact that you have Plasmapherisis monthly for a year. I was wondering if you had a permanent port put in or how they did that. I am asking because I was just in the hospital and they have so much trouble with my small veins that they finally ran a picc line but took it out when I left. All the nurses said to talk to my doctor about having a port put in because it was so difficult to find a vein and my veins were getting so beat up. But I have not had my follow up appointment yet. I have been in the hospital 2 times in the last 5 months for 5 Plasmapherisis treatments each time but both times they removed the port when I left the hospital. So I was wondering about if a permanent port was like a Plasmapherisis port and if so why they did not leave that port in since I have to have blood draws every 2 weeks and have been in the hospital so much. I would appreciate you input. Thanks.

msdoublevision 05/27/2018

Thank you for the suggestion, Russ.

Tmarevans:
I did not have to use a port, although they wanted to put one in at the first session. Fortunately I do have decent sized veins so they did not have too much trouble. They did alternate which arm was “in” and which was “out” each time. However, one of the nurses did note that if I continued with the treatments my veins would begin to develop scar tissue from so much poking, so that is something to ask about.
Take care,
Cindy

Amyjo 05/30/2018

I am currently trying the cbd oil for general MG symptoms that do respond to mestinon, Dr's still unwilling to diagnosis "until I get worse." It seems to help some... as the severity of my spells have lessened and general pain is better. No side effects of the cbd thus far, using 1/2 dropper of 250mg concentration twice a day. Good luck and I hope it helps you as well!

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