This is CRAZY! Do you live in the States, Jeanie? If so, your story confirms the view held by many that the U.S. "war on drugs" is misguided. You've done your research and have found that Marinol is in fact legal. So why doesn't the medical establishment know this? Because they're scared to death of being prosecuted for illicit drug prescriptions. CRAZY!!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
I agree Lernica. I live in Alabama where there is actually a law on the books that allows medical marijuana use for glaucoma and nausea related to chemo. For some reason this law has never been used for the benefit of patients for whom it might mean a better life. Not only that, but at the PM doctor's office they collect a urine specimen which I assume is for extensive drug testing as the doctor apologizes for having to do it. It is done every 3 months at a charge to insurance of $600! I am just hoping I don't need to go there much longer, but the oxycodone does help me, but only a little. The doctor is from China and is very kind and polite but he just does not know the answers to my questions about drugs I read about on the forum. I really wish there we some PN aware doctors in this area. I may try to get my meds form a neurologist like you are doing.
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
JeanieC wrote: I really wish there we some PN aware doctors in this area. I may try to get my meds from a neurologist like you are doing.
Jeanie,
I think this would be a really good idea. They deal with other painful nerve conditions like carpal tunnel syndrome and MS.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
It's ridiculous with such a condition you can't get a drug to just try and see if it will work. Nothing else out there seems to benefit people much. My wife continues to improve on a daily basis. It is a lot of work with all the therapy she does but was not possible prior to Marinol. It is relaxing the muscles causing the problem. Keep pressing your Dr. or find someone who is willing to look outside the box. Best wishes.
Thanks for the update, MSH! May your wife continue her improvements and eventually regain her good health. Keep up the good work!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Has anyone else except for MSH's wife tried marinol or medical marijuana yet?
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
I have been looking into Marinol and medical marijuana over the last few days, trying to make sure I've looked at all possible avenues.
In the UK, Marinol turns out to be called Sativex (which I had heard of, didn't realise it was the same stuff) and it is not easy to get. From what I can discover, it is only licensed in the UK for the treatment of spasticity in MS, but it can still be prescribed by doctors 'off label' for neuropathic pain or for other reasons. There would be a problem getting the PCT to pay for it, it is expensive.
The alternative is to go to the Netherlands, see a doctor there and get a prescription for medical marijuana, and then buy the stuff at a coffee shop'. Or more likely lots of coffee shops as they are only allowed to sell 5mg per person per day. This would be expensive. After having been prescribed it, it is then completely legal to bring the marijuana into the UK.
If you can get Sativex I think that actually might be better than Marinol. I have heard good things about it. Not here in the states yet. Here is a link to patient reviews. There was a lady somewheres that talked about it as a miracle drug for pelvic but I can't locate it right now. It has and continues to benefit my wife greatly. She is limited in dose currently because of side effects although the side effects are reducing some.
Marijuana
Marijuana
Marijuana
This week i smoked a joint for the first time in a very long time and for the first time since this pne has taken over my life. My friends from israel spoke to me about this a long time ago and really encouraged me to go for it. Medical Marijuana is legal in israel. Anyway, i highly recommend smoking this plant. Twice it got me out of bad-i need to lie in bed and cry- pain.
What an idiotic idea to make such a natural and acessable pain-killer illegal. We can grow it ourselves with the help of the sun and water and mother earth. Instead, we have to go begging... my insurance does not cover the pill...
listen guys, it is good
it can help give us another bit of our lives back
almost 37 years in this world, the last few years have been my merciless introduction to hell,
i take 100mg lyrica x 3, 120mg cymbalta, nerve blocks with dr.volovska
will self-medicate with marijuana when i can get my hands on some
am always in pain
if anyone has discovered the why? behind all this suffering please fill me in
thank you all for this forum
If anybody is interested, the state where I live (California) has legal medical marijuana. It is extremely easy to get. You pay $50 for a walk in prescription at numerous dispensaries that advertise in the weekly papers and then buy your pot. I enjoyed smoking marijuana recreationally for 40 years but had to give it up because it made my PN pain worse but many people seem to find it helpful for any number of conditions.
Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Do you live in the States, Jeanie? If so, your story confirms the view held by many that the U.S. "war on drugs" is misguided. You've done your research and have found that Marinol is in fact legal. So why doesn't the medical establishment know this? Because they're scared to death of being prosecuted for illicit drug prescriptions. CRAZY!! 