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Living with Polyneuropathy CIDP, GBS, & CMT

CIDP and Cannabis Oil

This Spring I was diagnosed as having CIDP, and as having the GD1a antibody in my blood, which the literature says affects the motor nerves...my neurologist was very confused because I do suffer from sensory nerve damage in my feet, but maintain all of my coordination, and have pretty much 100% muscle strength still. He said he's not seen a presentation like mine and asked me what I was doing, if anything. So.....I told him that I had been doing Cannabis Oil since mid January. (I live in Wa. State and am a legal Medical Marijuana patient). That piqued his interest and he told me that he had read some info about it and was very interested. We talked quite a bit and we then decided that CO would be my treatment at this time. No mainstream meds, no IVIG. Let's see how it goes.....He made an appt. for next April and said if anything changes for the worse to make an appt. right away. My CIDP symptoms change minute by minute/ day by day, but the worst so far has been very mild buzzing elbows to fingertips and knees to toes on the odd occasion, and some neuropathy symptoms in my feet, which I have had for years. Beyond that, the CO seems to be controlling my CIDP so far!

What dosage of CO?

GBS is a subacute disorder that progresses over 3-4 weeks, then plateaus and usually improves over months and does not often recur. CIDP, by definition has ongoing symptoms for over 8 weeks and usually does not improve unless ongoing treatment is given. I'm curious if you have had a second opinion. I obviously don't know your titre numbers, but I am curious.

The target of immune attack is different in the subtypes of Guillain-Barré syndrome (GBS). In acute motor axonal neuropathy (AMAN), the attack appears directed against the axolemma and nodes of Ranvier. In acute inflammatory demyelinating polyneuropathy (AIDP), the attack appears directed against a component of the Schwann cell. However, the nature of the antigenic targets is still not clear.

IgG anti-GD1a antibodies were closely associated with AMAN but not AIDP. With a cutoff titer of greater than 1:100, 60% of AMAN versus 4% of AIDP patients had IgG anti-GD1a antibodies; with a cutoff titer of greater than 1:1,000, 24% of AMAN patients and none of the AIDP patients had IgG anti-GD1a antibodies.

In contrast, low levels of IgG anti-GM1 antibodies (> 1:100) were detected in both the AMAN and the AIDP forms (57% vs 35%, NS). High titers of IgG anti-GM1 (>1:1,000) were more common in the AMAN form (24% vs 8%, NS).

Obviously its all irrelevant because your are doing okay,but I gotta wonder if your problem is CIDP or something else. In any event hang in there.

Thank you ModSupport! You MAY be correct in what is ailing me may not be CIDP.... I did 4 1/2 hrs of tests at my neurologist's including NCV?, which was not a lot of fun with all the shocks, and another where he poked muscles with a small needle that was attached to the computer....he told me there is significant nerve damage in my legs, but my muscles are still very strong. They took around 14 tubes of blood, and everything came out looking great except the test that showed I have the GD1a. From that he diagnosed me as having CIDP. He actually after the first appt. when he did the nerve and muscle tests he preliminarily diagnosed me as having CIDP. I've had a mild foot neuropathy for decades and my mother and 3 sibs all have the same, so I have to go on what he says, although I definitely have questions.... I have a friend who has had MS for decades and has had great success using cannabis oil, and she recommended that I try it... Thanks for the info! To: Old Joe: I personally have worked up to taking an amount of oil that is about the size of 2 grains of rice, and I only usually take it within an hr of going to bed, as it definitely has a bit of a "high" effect and if I take it before bed I sleep very well and don't get buzzed. If you do facebook there is a page there called cannabis oil success stories, that contains TONS of anecdotal stories and information about using the oil. It seems that the standard protocol for curing cancers, etc. is doing 60 grams of oil in 90 days, starting out slowly and working your way up to a gram a day. I don't actually know how much (gram/wise) that my 2 grains of rice size dose I take is, but I don't think that it's a gram.