1. < Neuropathy

No wonder there is so little being done about Neuropathy!

Posted by steeldove @steeldove, Nov 7, 2020

When neuropathy isn't even listed as a major neurological disorder:https://jamanetwork.com/journals/jamaneurology/fullarticle/2772579

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 11, 2021
In reply to @johnbishop "@polywog, Thank you so much for your answer and thoughtful response. What you said is the..." + (show)
@johnbishop

@polywog, Thank you so much for your answer and thoughtful response. What you said is the heart and soul of what Connect is all about - patients helping other patients.

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Good afternoon Paulette @polywog and John @johnbishop. I have received your private message and reviewed the request. I am choosing to answer in the public forum because then others may have an opportunity to benefit from this discussion.

You told me that your neuropathic burning pain was 1000 times worse after eating a cannabis-laden piece of chocolate. I have never had any negative responses to medical cannabis. You thought it might be because it contained some THC. Are you negatively sensitive to THC? I am asking because even the totally legal CBD has a small amount of THC. And unfortunately for you, all of my products and dosages have varying amounts of THC depending on the time of day and my activities. I will see if I can locate the last post I did for the public forum with everything listed.

May you be free of suffering and the causes of suffering.
Chris

REPLY
1 reply
magnum52 | @magnum52 | Jul 12, 2021
In reply to @polywog "Anne Louise Oaklander Is a small fiber neuropathy researcher with Harvard medical/Massachusetts general. She has a..." + (show)
@polywog

Anne Louise Oaklander Is a small fiber neuropathy researcher with Harvard medical/Massachusetts general. She has a couple of lectures on YouTube. in one of her lectures she talked about the prevalence of neuropathy amongst those with fibromyalgia. With a much higher incidence of neuropathy she would be better positioned to get grant money. It’s all about the numbers. she also has a grant to study Iraq war syndrome and its correlation to small fiber neuropathy.

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Unfortunately, Dr, Oaklander no longer is taking new patients. I don’t know why other than all she is interested in is doing clinical trials. I thought that being a doctor means you enjoy seeing new patients and trying to help them. Guess not.

REPLY
2 replies
polywog | @polywog | Jul 12, 2021
In reply to @magnum52 "Unfortunately, Dr, Oaklander no longer is taking new patients. I don’t know why other than all..." + (show)
@magnum52

Unfortunately, Dr, Oaklander no longer is taking new patients. I don’t know why other than all she is interested in is doing clinical trials. I thought that being a doctor means you enjoy seeing new patients and trying to help them. Guess not.

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She has a researcher.

REPLY
magnum52 | @magnum52 | Jul 12, 2021

She has a team of people that help with research, but still is not accepting new patients, not that their is a lot she can do to help them.

REPLY
polywog | @polywog | Jul 13, 2021
In reply to @magnum52 "Unfortunately, Dr, Oaklander no longer is taking new patients. I don’t know why other than all..." + (show)
@magnum52

Unfortunately, Dr, Oaklander no longer is taking new patients. I don’t know why other than all she is interested in is doing clinical trials. I thought that being a doctor means you enjoy seeing new patients and trying to help them. Guess not.

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She is a researcher. Not a practitioner

REPLY
1 reply
polywog | @polywog | Jul 13, 2021
In reply to @polywog "She is a researcher. Not a practitioner" + (show)
@polywog

She is a researcher. Not a practitioner

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I wish there was a way to edit my comments. That is supposed to say… She is a researcher, not a practitioner

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 13, 2021
In reply to @polywog "I wish there was a way to edit my comments. That is supposed to say… She..." + (show)
@polywog

I wish there was a way to edit my comments. That is supposed to say… She is a researcher, not a practitioner

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Hi Polywog, members can edit their posts within 30 minutes of publishing them. I have edited your post for you.

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 14, 2021
In reply to @artscaping "Good afternoon Paulette @polywog and John @johnbishop. I have received your private message and reviewed the..." + (show)
@artscaping

Good afternoon Paulette @polywog and John @johnbishop. I have received your private message and reviewed the request. I am choosing to answer in the public forum because then others may have an opportunity to benefit from this discussion.

You told me that your neuropathic burning pain was 1000 times worse after eating a cannabis-laden piece of chocolate. I have never had any negative responses to medical cannabis. You thought it might be because it contained some THC. Are you negatively sensitive to THC? I am asking because even the totally legal CBD has a small amount of THC. And unfortunately for you, all of my products and dosages have varying amounts of THC depending on the time of day and my activities. I will see if I can locate the last post I did for the public forum with everything listed.

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Hi there Paulette, @polywog ........here is the most recent list of the products I currently use to control my small fiber neuropathy.

Morning........1:1 CBD/THC by Papa and Barkley (I have had a relationship with this company for many years. They also sell and ship CBD-only products at http://www.papaandbarkleycbd.com.
Afternoon......depends upon pain level.....2:1 CBD/THC Care by Design (this is another company that I have used for several years, They also have CBD only products at http://www.cbd.org
Bedtime...... Depending on my pain level, a nighttime double dropper dose of 2:1 CBD/THC or if in severe pain,
1:3 CBD/THC boy Papa and Barkley. This is the strongest mix I use.

Topicals: Papa and Barkley 3:1 CBD/THC Releaf Balm for steady, chronic pain or Papa and Barkley 1:3 CBD/THC for acute pain. These come in small and large jars. I fill the small one from the large one for travel.

I hope this is helpful. I stay with these two companies because of their research efforts, product consistency and compassionate care.

May you be free of suffering and the causes of suffering.
Chris

REPLY
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