I live in Colorado. So, buying Marijuana is no problem, especially since my husband uses it for a disc in his back. I'm 65 and tried it in college. It's so much stronger now that I don't know how to dose it. My pain management doctor told me to try it. I had a horrible experience on it and thought I was velcrowed to the couch. He said that the part I needed is mixed in with other chemicals at this point. He said it would be like smoking a trash can and hoping to get one ingredient in it. The University of Alabama is working on separating it out of the rest of it. I'm glad you can tolerate it and that it's helping you.
Jan
Paco said:
I was having a hard time tolerating the oil by taking it orally, but now I switched to a suppository in the morning and then before bed I take a small oral dose, which really helps me to sleep. It took me a while to figure out just how much I could take at night without waking up feeling buzzed tho....again, if you are on facebook, check out the page cannabis oil success stories. As far as potency goes; it IS more potent than it used to be, but if smoking, try just one tiny little puff and then wait a few minutes. It doesn't take much! One can also find a lower THC type of smoke in the shops.....
Paco said:
BISHOP22 said:
Enmg is almot the same as electromyography (EMG). I've been thru Ivig infusion for several years, but always 2mg/Kg over 5 days, never 3!
JanD said:
Dear BISHOP22,
What is Enmg? I had 2mg/kg over 3-5 days (it was three days) for my loading dose. Then 1gm/kg each month. I've only had one of the monthly infusions, which did not help like the loading dose. I had three pain free days after my loading dose.
Jan
BISHOP22 said:
JanD: I do have CIDP, since 2000. Regarding each of your infusions, How many days (each session), what was the total amount of Ivig per session? Have you done any Enmg 30 days after first infusion session? If yes, have you any improvement?
JanD said:
So far, mine is sensory only. That may be how the disease progresses. I really don't know. But, I have started IVIG infusions. After the loading infusion, I had no pain for three days. The booster didn't help. But, I was told to keep getting infusions until about six months to see if it was going to help. Also, I didn't realize that I was really low energy until it was time for my second infusion. The infusions really help with my energy.
Hello! Paco here.......I was diagnosed with CIDP, after my feet started to get worse just about a year ago now, and months of Dr. appts. and testing. I have had some type of neuropathy since I was a teen and am now almost 62. I suffer only from sensory loss myself. Before October 2014 my feet sometimes felt like they were burning, and often like my socks were balled up underneath, nothing serious. In fact, I thought at the time that everyone's feet felt like that, but then it became that they always felt hot, uncomfortable, burning, tingling, pins and needles, numb, and anything touching them, like a bed sheet, made them send crazy messages like shooting pain, startling shocks, and other craziness....The NCV test showed that I had significant nerve damage in my legs. All the blood tests came back looking great, except they found the ganglioside antibody GD1a in my blood, which is associated with motor nerve neuropathy, yet I still retain all of my muscle strength, balance, and coordination..... my neurologist is/was puzzled.... Living in Wa. State and being a medical marijuana patient, I had done some research and decided to start taking Full Extract Cannabis Oil around mid January. (There is a facebook page called cannabis oil success stories-if you do facebook, check it out. Lots of info.....) I told my neurologist what I was treating the CIDP with, and that my feet were pretty much back to where they were pre diagnosis, and he was very interested, as he had read some info about cannabis oil, and after talking a while, we decided to not do any mainstream treatments, skip the prescription drugs, and continue with the cannabis oil, which we think may be healing my body, or keeping the CIDP to only sensory loss. Either that, or I am misdiagnosed. We are doing a "wait and see" for the next 9 months. I have an appt. with my neurologist in April 2016. If my symptoms worsen, we will try starting mainstream therapy, including IVIG, immediately, but for now, the oil SEEMS to be doing a fabulous job.
I live in Colorado. So, buying Marijuana is no problem, especially since my husband uses it for a disc in his back. I'm 65 and tried it in college. It's so much stronger now that I don't know how to dose it. My pain management doctor told me to try it. I had a horrible experience on it and thought I was velcrowed to the couch. He said that the part I needed is mixed in with other chemicals at this point. He said it would be like smoking a trash can and hoping to get one ingredient in it. The University of Alabama is working on separating it out of the rest of it. I'm glad you can tolerate it and that it's helping you.
Jan
Paco said:
I was having a hard time tolerating the oil by taking it orally, but now I switched to a suppository in the morning and then before bed I take a small oral dose, which really helps me to sleep. It took me a while to figure out just how much I could take at night without waking up feeling buzzed tho....again, if you are on facebook, check out the page cannabis oil success stories. As far as potency goes; it IS more potent than it used to be, but if smoking, try just one tiny little puff and then wait a few minutes. It doesn't take much! One can also find a lower THC type of smoke in the shops.....
Paco said:
BISHOP22 said:
Enmg is almot the same as electromyography (EMG). I've been thru Ivig infusion for several years, but always 2mg/Kg over 5 days, never 3!
JanD said:
Dear BISHOP22,
What is Enmg? I had 2mg/kg over 3-5 days (it was three days) for my loading dose. Then 1gm/kg each month. I've only had one of the monthly infusions, which did not help like the loading dose. I had three pain free days after my loading dose.
Jan
BISHOP22 said:
JanD: I do have CIDP, since 2000. Regarding each of your infusions, How many days (each session), what was the total amount of Ivig per session? Have you done any Enmg 30 days after first infusion session? If yes, have you any improvement?
JanD said:
So far, mine is sensory only. That may be how the disease progresses. I really don't know. But, I have started IVIG infusions. After the loading infusion, I had no pain for three days. The booster didn't help. But, I was told to keep getting infusions until about six months to see if it was going to help. Also, I didn't realize that I was really low energy until it was time for my second infusion. The infusions really help with my energy.
Hello! Paco here.......I was diagnosed with CIDP, after my feet started to get worse just about a year ago now, and months of Dr. appts. and testing. I have had some type of neuropathy since I was a teen and am now almost 62. I suffer only from sensory loss myself. Before October 2014 my feet sometimes felt like they were burning, and often like my socks were balled up underneath, nothing serious. In fact, I thought at the time that everyone's feet felt like that, but then it became that they always felt hot, uncomfortable, burning, tingling, pins and needles, numb, and anything touching them, like a bed sheet, made them send crazy messages like shooting pain, startling shocks, and other craziness....The NCV test showed that I had significant nerve damage in my legs. All the blood tests came back looking great, except they found the ganglioside antibody GD1a in my blood, which is associated with motor nerve neuropathy, yet I still retain all of my muscle strength, balance, and coordination..... my neurologist is/was puzzled.... Living in Wa. State and being a medical marijuana patient, I had done some research and decided to start taking Full Extract Cannabis Oil around mid January. (There is a facebook page called cannabis oil success stories-if you do facebook, check it out. Lots of info.....) I told my neurologist what I was treating the CIDP with, and that my feet were pretty much back to where they were pre diagnosis, and he was very interested, as he had read some info about cannabis oil, and after talking a while, we decided to not do any mainstream treatments, skip the prescription drugs, and continue with the cannabis oil, which we think may be healing my body, or keeping the CIDP to only sensory loss. Either that, or I am misdiagnosed. We are doing a "wait and see" for the next 9 months. I have an appt. with my neurologist in April 2016. If my symptoms worsen, we will try starting mainstream therapy, including IVIG, immediately, but for now, the oil SEEMS to be doing a fabulous job.
Thanks everyone for your feedback, stories and support. My fiancé has his second IVIG on Sat. Wednesday they move him to a rehab and he noticed the next day at physical therapy he could stand. He’s also saying his feet are burning hot now, where they used to be freezing cold and even to the touch were cold. He said that today he was walking with the assistance of a walker. I’m hoping this where the tides changes. Our family has been tested and been through it all finically, mentally, emotionally, and physically. Not just for the patient but the family, kids and in most cases your significant other. I find him lashing out at me and started to shut himself compelltly out. I hope that him seeing how he can stand up walk etc is giving him the confidence he really needs right now because he’s really pushed us away rightwhen he found out he was going to rehab. I understand thy as a loved one and their main support is extremely difficult as well. There has been many times I wished it was me not him, wishing and praying our boys wouldn’t be extremely impacted in a negative way through all this. I have to keep schedule for the kids, keep the housework done, appointments, and visiting everyday with a very fast, adorable 2yr old. It’s exhausting especially when somedays you wanna jusylt lay there and cry and others days you can’t stop reading till late. All the while with mostly smile on my face. I’m not perfect and have my moments but I try to be a support with taking care of the kids and the house and come up visit everyday(before he was recenty moved over an hr away to rehab) everyone’s input has helped me through this crazy disease and has given me a great group of people who understand. Once again thank you all. It’s interesting what Robert said about his feet starting to burn when he was feeling better! Just hope we can keep this good momentum and posititve energy.
He’s up and walking. He can’t believe he could even stand up!!! The next day they let him walk with two bars without being harnessed to the ceiling and he was anxious about. He then started walking and he said he couldn’t believe it. They wanted him to stop and shocked at his reaction that he could walk and wanted to keep going. He did say that instead of his feet feeling freezing cold they are hot like burning. I’ve heard the storiesand everyone described a burning feeling but his feet were so numb he said they felt like ice cubes. He now is positive and is hopful that this is actually working!! He prays it will continue as he is determined and anxious to get his life back!! You all have helped me stay sane during these last 6 months reading stories of your struggle but overcome it with amazing strength. I admire the mental strength you all have and I have a much better understand of what exactly he’s going through. If any of you have suggestions on how to continue to support him like when he has his bad days and can’t do what he is doing now and gets depressed and down. It’s hard to know what the right thing is to say. I’ve found telling him the journeys I’ve read on here and it is u
As far as supporting him when he is down, it would be best to have a discussion with him. Some people like to crawl up and find a cave, while others like attention and loving. We're all different.
Keep us posted.
Jan
My3boys29 said:
He's up and walking. He can't believe he could even stand up!!! The next day they let him walk with two bars without being harnessed to the ceiling and he was anxious about. He then started walking and he said he couldn't believe it. They wanted him to stop and shocked at his reaction that he could walk and wanted to keep going. He did say that instead of his feet feeling freezing cold they are hot like burning. I've heard the storiesand everyone described a burning feeling but his feet were so numb he said they felt like ice cubes. He now is positive and is hopful that this is actually working!! He prays it will continue as he is determined and anxious to get his life back!! You all have helped me stay sane during these last 6 months reading stories of your struggle but overcome it with amazing strength. I admire the mental strength you all have and I have a much better understand of what exactly he's going through. If any of you have suggestions on how to continue to support him like when he has his bad days and can't do what he is doing now and gets depressed and down. It's hard to know what the right thing is to say. I've found telling him the journeys I've read on here and it is u
I’m new to this group. I was diagnosed in September (2015) at the Mayo Clinic in Rochester, MN. I have both sensory and motor issues. In the past two years, I’ve done spinal epidural steroids, oral steroids, seizure medications, immunosuppressants, IVIG, and chemo. IVIG was by far the best treatment. My body ‘woke up’ so to speak and my brain initially didn’t quite know what to do with itself. I had lost all pain reception in my hands and feet (which can be dangerous), I had lost touch and temperature sensation as well. In June, I started IVIG as a trial to treat small fiber neuropathy. I also started Rituxin two weeks after. The first time, after I had started treatment, my daughter held my hand I couldn’t get over the experience. I could feel the warmth and her little fingers tucked into mine. It was the best moment I will cling to for the rest of my life. Anyway, sometimes hot water feels like I’m being tickled and cold just doesn’t register. I now feel, but not like I should. I, like most of you, have to look at what I’m doing to know what I’m doing. For a long time, I couldn’t pick up objects without watching and mentally walking myself through the task. Now, I can and I’m working each day to regain my fine motor losses. I feel like I’m rambling, sorry, such is the case now as it is hard to stay focused with my body screaming at me from every direction.
If I were looking back, I would want someone to have told me this. Be proactive in your treatment and trust in yourself even if others cannot understand you. I asked myself many times over the years if I were crazy because no doctor could quantify my experiences. I was sent to psychiatry and psychology. I took the drugs and did the therapy, but didn’t get better. I stayed persistent and it finally got me the treatment I needed. I was persistent, though, because life was pure hell and I needed relief. The first two weeks of IVIG were a true awakening and the following thirteen weeks were a real blessing. I was tapered off in August because it was an experimental trial and all of the sensory and motor issues flared. Luckily, I start my IVIG back this week. I’m also taking Cellcept now. I’ll be doing IVIG weekly for the next six months and the. We will attempt to taper again.
I don’t know if anyone else is working with physical therapy, but I would highly recommend it. I started a few weeks ago and I cannot tell you how much relief it has given me. It has reduced my stiffness and I’m working with ‘nerve gliding’ exercises at home. I also use a TENS unit and traction (have for six months) as well as Botox in my neck, shoulders, back, and head. The PT has helped me reduce the amount of meds I take during the day. I also have a better quality of life. Progress is slow, but it is still progress.