I know there are many conflicting arguments out there for this topic.

I figured Id bring this subject up as I was suggested it today by my GP.


Right now im having almost a 5 hour headache every day, plus tingling/pain in my feet and fingertips. My GP is calling it myalgia. He gave me valium for this, and i told him i didnt want any more pills. I also complained about insomnia the prednisone is causing and i cant get off it right now.


Then he suggested medical marijuana. There are different strains that help just for sleeping, and those for more 'functional' high. I know some people with MG think that this would hurt their breathing/make them worse and I think maybe it has a different effect on anyone. But I think i might try it if the insomina/pain due to constant weakness/headaches dont go away. You dont even need to smoke it, they have edibles, vaporizors, etc.


What are peoples thoughts on this?

Tyson this may seem strange coming from a 71 year old career military man but I would give it a shot. Everyone with MG has different problems right now mine is weight loss, so I have thought about it to help me eat more. So I say go for it and I hope it gives you some relief.
Mike

Well, I have heard of many folks who believe they have benefited from it ... but they have been cancer patients seeking relief from chemo nausea. I don't know about neurology / headache issues.

While I applaud your GP for thinking outside the box...I am not sure I would try this without running it past your neuro .... and the stem cell team. You wouldn't want to do anything that would either cause a weak spell or disqualify you from the stem cell study.

I hope you get to feeling better. Do you think all this has anything to do with your new immuno med?

Mike- doesnt seem odd at all, i think it could really help. (Coming from a 19yr old I bet it sounds like im a junkie. Promise im not).

Sue- I know a few MG patients that partake for the sames reasons as I. But also with chemo patients more/less. I have run it by my neuro she said she has no problem with it, she just doesnt comend. As far as my GP he is thinking outside the box, and thats what i need truthfully. But it will not effect my weakness, not saying i have or havnt done it...

but i cant imagine it would bother the stem cell transplant. I will not be having that until this summer.

Thanks for ur guys' post

a few pros and cons

pros
if you have any stomach issues from taking the pred or the mestinon it will help massively
will almost def help with the insomnia
stress is one of my biggest mg triggers and this brings it down a lot

cons
sometimes it makes breathing a bit more difficult
easily turned from medicinal to recreational
if you are in an unstable state of mg and mix flared up mg symptoms with being high it can just make it worse

that being said i feel the benefits that i personally gain from using marijuana far outweigh the harm done by it

I'd check with the stem cell people! Most definitely.
The question for you, Tyson, who is planning on a very specialized medical treatment still in the "study" stage, is to avoid anything that can interfere with the study, and your response to the agents used there. If you were not participating in the study at all, then the question then revolves around pain relief potential and other issues that revolve around medical MJ use.

Marijuana has an extremely long half life. Once you start using regularly it can take many months to leave your system.
http://alcoholism.about.com/od/pot/a/marijuana_test.htm

Study parameters on medical treatments are very strict in what they will allow the participants to do, eat, or consume. MJ is still considered a "recreational" drug... it is fat soluble and may be in the bone marrow.

Numbness/tingling in hands and feet are signs of neuropathy IMO. They may occur with impaired glucose tolerance, or from certain toxic drugs. Neuropathy in diabetics starts before the actual blood glucose becomes seriously deranged. This article explains the development of neuropathy during pre-diabetes:
http://www.citeulike.org/user/wrs1/article/6499468
Most neuropathy starts in the distal parts of the body, hands and feet and then progresses toward the trunk. It is not uncommon for doctors to dismiss it. Or even misdiagnose it, as we know very well at the PN forum.

In some cases, numbness and tingling signal mitochondrial damage. If this becomes longer term, the mitochondria in the nerve cells may die and the neuropathy becomes permanent. This happens in certain forms of poisoning (arsenic and thallium) and also with Chemo and toxic drug ingestion, pesticides and solvents.

This is a general link for people with beginning neuropathies. The drug list is only a sample, of the long list of agents that can damage nerves.
http://www.nlm.nih.gov/medlineplus/e...cle/000700.htm

and I found this list of drug agents from Merck Manual for physicians, that can cause neuropathy :

It it includes tacrolimus as a demyelinating agent.
http://www.merckmanuals.com/professi...europathy.html

This is significant for you, Tyson. Demyelinating can lead to motor damage as well as sensory. MS for example is demyelinating.

Your doctor is either hiding something from you, (which they tend to do in some cases), or is uninformed. In either case you have to become your own advocate or risk further damage to your nervous system.