Thanks, Cyn! Man, it's so good to know that others go through this.

As for the MMJ, I wouldn't even know where to find a dispensary. I know they had an article in your paper about some healing center that wanted to offer MMJ. The landlord was NOT on board with it and that seems to be an issue throughout the state.

A while back someone on here, I think it was Kay, mentioned putting it in butter and using it that way. I have been asked by a few people if I was going to get my card now that it is legal. I haven't decided on that one. I don't want to get an unpleasant high like what you experienced. I just want relief.

Plus, as I lay here in bed almost flat on my back, I keep looking at my Ativan bottle and keep debating and asking myself . . ."Is it bad enough to take one?" I know it helps some but I just can't get myself to take them. I am so bad about that and would probably be the same way with MMJ.

Baclofen really didn't help and it made me irritable and hungover and just feeling like carp! I tried it for a week at full dose and then the neuro had me take 1/2 tablet. Even the 1/2 did that to me and it really didn't help the hug much.

As I mentioned in Dej's thread, valium worked great, I think. One valium will knock me out for a day and a half. LOL Even 1/4 of a dose knocks me out some.

That is how I ended up with Ativan.

Sandy makes cannabis butter and gives Jim cookies...it lasts longer in the system, I think...
your landlord wouldn't be able to object to cookies
If you took it this way in the evening, it might calm down all of the sxs. I know it calms mine down, but the cannabis I inhale makes me feel awful...so I don't use it very often, only when the spasms are almost unbearable and I've maxed out on dosage of zanaflex.

There are cookbooks for cannabis out there; I once saw one at Barnes and Noble...
You're lucky that your state is compassionate enough to pass that bill; ours is still in the neandrathal phase...I feel that if we had dispensaries, I would be able to obtain the type of cannabis that would be appropriate for my symptoms, instead of buying it off the street with God only knows what's in it...

Places are just getting up and running. My pharmacist friend just told me of two dispensaries.

I heard the same thing about the dispensary having problems locating in the medical building you are talking about. It is really a perfect place for it. A professional surrounding.

Did you know Colorado has had MMJ for TEN years!

I have tried pre made brownies and blondies. Both were good tasting.

I also was given pre made butter that I put in a batch of chocolate gooey brownies. Tasted very good and it made me think it was an overdose waiting to happen.

I am sure there is something going on in Tucson. The price of getting everything in order and the hassle the state has put on it makes it difficult but not impossible. Everything should be easier in the fall. But I think I am serious about going forward. Can't hurt like MS hurts!

It is just a matter of dosing. The last two times though as the herb took effect, my feet stopped the intense pain and the hug was lessened. No spasms as I laid there. A general quietness in my body.

Come morning, my body is a bit "loose" but it stiffens up pretty quick to start walking and do it all over again.

Debbie - I know, there is no way I would be buying off the street. I've heard too many stories from DDs about kids who smoked it and it was laced with PCP or something. I'd have to make my dealer smoke it 1st with me watching. Kind of like a demo. And yes, both Sandy and Kay put it in butter. Of course, in Kay's case, I think it is legal in Belize. Both said that it works just as well.

Cyn - I knew MMJ was legal in Colorado. DBF's niece has a friend that grows it and dispenses it there. The article I read was about a place in Ahwatukee. They don't want the dispensary in some shopping center and the landlord was giving her a hard time. It was several weeks ago that I saw that article. Crazy though. It's now legal but apparently that shopping center is too uppity to allow that. They are ok with her healing center, just not the dispensary part. I think they wanted her to move to some industrial area around Priest & University or something like that. Like who wants to go there to get their MMJ.

I go through my desperate moments with the hug. The pain can be so intense that you feel like you are going to pass out or throw up or both. It's at that point that I start searching for anything that will help. I have yet to find anything that completely relieves the pain. When I 1st started gabapentin it was like miracle drug to me. But over time, it's not as effective as it used to be.

Recently, I noticed this pattern to it all and just reflected on it. I am guessing that if I take something right when I feel that 1st zap of nerve pain, I may be able to avoid all the other stuff. I will be seeing my dr. about all of this next week. I need better pain management. I am a much happier calmer person when I am not in pain.

Again, it is good to know that others experience something similar. Thanks!

This thread is incredibly enlightening. I brings a new vista to the spasms and cramps which I have had--used to have more than now. I thought the MS hug was just a squeezing, which would involve tense muscles, a sense of not breathing well. But I didn't know it would include the stabbing/aching pain which I had in the abdomen, about the middle of the diaphragm, which I have in recent years attributed to the Porphyria, which is notorious for ab pain. Of course I had bad constipation, sometimes "obstipation" until I got on big doses of magnesium.

I still have the stabbing pain part of this. I get it mostly at night, when relaxed, and wake up with a very sharp pain in the diaphragm area. I feel like I am as good as dead.
I used to have this more frequently---much more frequently--before the menopause and before Porphyria diagnosis. The menopause got rid of some of the estrogen which had been triggering Porph ab pain. But now I realize, after reading this, that MS could have done a job on my middle too.

If I were not sensitive to all of the Porph triggers, I would go back to saying I had primarily MS as the neuro ailment which causes these things. I think there is a mysterious cross over anyway, between MS and HCP type Porphyria (that's Hereditary
Coproporphyria or one of its mutations)

I know that the reason the stabbing pain is back is due to the Interferon I was taking for my "new" disease, Polycythemia Vera. I had almost gotten over it, for many years, only having it a few times a year. I am off Interferon now for 12 days, so I may go back to my usual state as far as the spasms and pain goes.

One thing which indicates a Porph connection is that I get the "hug" when I have a severe trigger such as the formaldehyde in flu shots or polyethelene glycol which occurs in many drugs and in one form of Interferon called Pegasys (it's the Pegalating or timed-release agent in Pegasys). it is in MANY drugs and cosmetics, which I do well to skip--I read a whole lot of labels. I get it from mercury in flu shots, I meant to say, but of course there is often formaldehye in shots like that too, including the Interferon I was taking. So I'm not giving up my Porph dx, just saying I get "the hug" too.

re: MMJ

i put in a call to Desert Springs Cancer Center. One of the physicians is doing research and they may be looking for test subject other than cancer. If I can obtain MMJ without the prohibitive cost, that would be great.

My hug does not come with as much pain as some of you seem to have. But Trish, MMJ may be a good course of action if you can tolerate smoking and getting relief immediately.

We can try something down along in the fall. Maybe I will come to Tucson with the vaporizer and you can see if it helps. DD moved back to PHX but if I go for CCSVI, I may end up at Tucson facility.

Since I've been diagnosed for three years, and even beyond that, I've had this off and on pain under my left rib cage that sometimes go to my back. Some of you have described this feeling of a golf ball. Do you mean that it just feels like something is in there? Or do you actually feel a bump or a knot in there? I have had an US, CT scan and a gastroscopy which nothing has showed up on any of these. My labs are all normal. I just wonder if what I have been feeling for years is this hug. When I think of a hug I think of a squeezing sensation...don't know if I could describe it as that. My colon is sluggish much of the time...constipated. I am planning on getting that magnesium and starting that in a low dosage.:

My hug is mostly on my right side, up under my rib cage. For years it felt like someone squeezing my liver, then it changed to feel like someone tugging my liver. As the years have passed the area has grown side ways, and somedays I get the full frontal treatment, feeling like too tight a band around me, yet it feels like someone is trying to roll my diaphram up and under into my rib cage. roll it like a rug. its painful! I normally get hiccups when I get the hug. I am told the phrenic nerve controls the diaphram so its not surprising.

Xanax took away the panic attack I was having and gave me mild relief
Klonopin gave me relief but kept me awake and aggitated.
Ativan does help, but the next day I feel it again.
I have no desire to go back on gabepentin. i felt horrible on it.

I have days and weeks that can pass by with no word from it, and then...BLAMMO I roll over and its there. it can range in intensity from someone pushing on me or holding a firm hand against me to someone really trying to yank out my liver. I think for a long time the MDs thought I was making it up seeking drugs, till I screamed at one. "did I ASK you for drugs? NO! What I asked for was an answer!" he didnt see me again. Grouch!