People with MD who cant use arms

I just plan to try and stay alive at this point ???

Idk this is all new to me I had the Rhabdo in Januaray and it freaked me out so bad that I didnt go back to see any doctors until I wound up in the hospital in September.

The past 2 months or so have been a blur man for real idk wtf is going on anymore

I'm scared to death really and none of the doctors here know wf to do, as you can see from this article, how rare this is---

I'm just trying to ease the pain, I just turned 32 a couple days ago, spent my b-day in the hospital actually, got shot up with Dualidad, IV infused/flushed and came home. Did eat some cake though, at around 2 am when I got home. heh

 

I've been in contact with these guys:
Toxic Myopathies - Symptoms, Diagnosis, Treatment Options

Hoping to get some treatment after the holiday season since people are usually on vaca

It's about a 4 hour drive or so but well worth it

 

Yes I'm aware that muscle pain is common for people taking stains, developing Rhabdomyolysis isn't. Usually, patients with toxic myopathies improve rapidly once the offending medication is stopped. Occasionally, however, patients who start out with a toxic myopathy may develop prolonged symptoms.

And this is where my problem is, I stopped the medicine because it gave me Rhabdo, and 11 months later my muscles are still breaking open and leaking contents into my blood and can possibly cause my kidneys to have problems. this is why I have been having IV therapy nearly every week. These things(muscle breaking) shouldn't be happening after carrying in 3-4 bags of groceries : /

I tried going bike riding once,(before I found out all this was going on) and my body felt like it turned to stone, it seized and my muscles locked up, completely stopped working and just had to sit on the ground. I felt so stupid just sitting there and all I could think is what and the hell is going on?????? I literally, can not walk...in my brain it makes no sense cause I'm saying, go foot, move and walk and its not going.

You'd really have to go through it to understand, its pretty trippy now that I think about it.


Someone posted a video earlier of some capsule but you have to go to a dispensary to get something like that right?

 

You know what I just got this notification on my phone via email and the fucked up part is I been up for the past 2 hours crying. l'm so ready to fucking give up, if it wont for my daughter man I'm serious.

I even went to the commonwealth pain center this week, a day after having an EMG and NCV, drove myself to both even though I shouldn't be driving, still in pain from being tazed and having needles inserted all over me the day before and you know those mother fuckers told me they couldn't help me. The doctor felt bad sure, but he said that I need to be seen at Johns Hopkins, this shit is so "rare" and so "unusual" that even he was scared to treat me. The doctor felt so bad but he wouldnt even write me a script. I sat in the parking lot of that stupid pain hospital crying, like an idiot, knowing I had to drive home, after spending 30 bucks for nothing(co-pay) and I was sop hopeful, I just knew they would help me I mean it's a pain management center FFS. BTW as far as driving does, my arms still work, they just get really weak after using them for long periods of time. Anyways this doc he called some holistic doctor he knows and told him all about me, and after about 5 minutes of my meltdown in the parking lot this Dr Bonner guy gives me a call and says come see me, I won't even charge you, I think I can help you blah blah. I've been told by the team of doctors here including the Dr. at the Commonwealth Pain Center, my Neuro team and this new holistic doctor that they will all put in referrals to get me seen sooner at Johns Hopkins but fuck man this shit is so frustrating...relying on traditional medicine and shit and no one wants to help me. They take one look at my labs and just like back away like I'm some sort of freak, it makes me feel like shit man.

This guy two days ago said, I've had two patients before who have come in to see me for this type of reaction that you had with this medication, but after they stop taking it their symptoms went away. The pain is caused by muscle deterioration, and you'er still having that after almost a year of being off this med. This is highly unusual and not something I'm comfortable treating. And just like the rest of my docs, they all say I need genetic testing, tests they can't order, that can only be done at VCU at least in my area, and it would take maybe a year or more to get in for genetic testing---so it looks like my only option at this point is my team of docs are ready to send me to Myositis Center at Johns Hopkins, but in the mean time it's pretty much fuck you, sorry you're hurting we can't help you with this pain. None of them want to even write me a script.

I'm so desperate, but I dont drink alcohol, ever , under no circumstance and I don't know what to do! I spent my birthday in the hospital, hooked up to IV infusion and of course, good ol' dualidad(which I fkn hate, that initial high/weird feeling scares the shit out of me really badly), which is becoming an almost bi-weekly event for me. I'm not going to go out and just buy a bag of dope, I've never ever done anything like that ever I dont even know how to do that....the only thing I know is shit I see on t.v. : / I dont even know people who sell that stuff anyways and I'd just never ever do something like that.

I just thought since DC is sort of part of VA(kind of idk), that maybe it would become legal for patients in VA but apparently that's not the case. DC is it's own separate entity and of course you know the big fkn hypocrites in Washington who work so hard to keep MJ illegal have to be able to get it for themselves, the irony that it's legal in DC almost sends me into fits of maniacal laughter.


Anyways /end rant FML and all that good shit

 

I'll suffer in pain everyday before I lose my kids or shame them or put them through the pain of being taken from me or my husband/their father. Until it becomes legal in my state, then I'll just suffer.

I have to put my family before myself, but the guy is right....there's only so much pain you can handle. I try so hard to manage it myself with lots of hot baths heating pads, lying in bed, cold packs but none of it helps. There isn't anything I can do anymore, this "MD" I have is really an induced form of muscle deterioration from a statin drug...and right now it seems like(this is going to sound really weird okay)....it seems like I'm at the bottom of a funnel, and every option has been exhausted here, and all of my doctors have done all they can do, and they are ready to send me and my records up to John's Hopkins...so like I feel like this whole experience started at the top and we are all now at the end of this funnel, or something. Where every single one of my doctors are agreeing with each other at this point, that they collectively are ready to send me up north to JH.


I just don't understand why in the meantime they won't at least help me manage my pain, it seems really unfair that we're expected to take the traditional route of putting faith in doctors and legal pharmaceuticals, prescription drugs, but when those options fail you, you can be jailed for trying to manage your pain yourself. It's just stupid to jail people for wanting to live pain free, I don't get that. Especially when they hand out harsher punishments/jail time for having a joint than they do manslaughter or some shit, it's ridiculous.

Anyways guys thanks so much for listening to me bitch and moan. Even though there's been some really awesome info posted in this thread, none of it would be legal at this time in my state so I can't consider these options right now, but I do really appreciate the feedback from you guys. Most forums, especially when a new person posts, the feedback is negative and people are assholes for no reason at all so I appreciate you guys being totally cool and shit and listening to my complaining.

 

I want pain relief so I can feel what it's like to function normal again

I'm not interested in feeling high


But I dont know what being high on weed even feels like, except for when I was a teenager and all I did was laugh. I dont want to just sit and laugh at things.


And I've been told that that shit they give me at the hospital is comparable to what people feel when they shoot up heroin, I personally don't know why anyone would pay money to feel like that. I don't like it, and that's just me personally. I was so fucked up I was talking to the little cartoon characters on my pajamas pants man, it was weird.


One medicine that they put me on made me hallucinate, I woke up one night and looked over and saw my husband sitting naked on the side table staring at me, but he was sitting like this:

http://lustratusrepama.com/wp-content/uploads/2009/08/The-thinker.jpg


except staring right at me, that shit scared me so bad.

 

Thanks for the info, I so do appreciate it but as it is right now, in my state, it is not legal and there are no dispensaries. Until it becomes legal I won't pursue MJ as an option.

When I originally made this post I thought that DC was part of Virgnina, and since DC is one of the 16 states with legalized MMJ, I thought I would be able to ya know, go to the doctor get a Rx etc....but apparently DC is it's own entity and you have to actually live in DC to benefit from the legalization AND it's actually still in limbo, all though it's been made legal they still have no dispensaries.


Amendment Act B18-622 "Legalization of Marijuana for Medical Treatment Amendment Act of 2010" -- Approved 13-0 by the Council of the District of Columbia on May 4, 2010; signed by the Mayor on May 21, 2010|

Effective: July 27, 2010 [After being signed by the Mayor, the law underwent a 30-day Congessional review period. Neither the Senate nor the House acted to stop the law, so it became effective when the review period ended.]

*[Editor's Note: Although the law took effect on July 27, 2010, the Mayor and the Department of Health have yet to determine how the medical marijuana program will be run. A DC Department of Health spokesperson told ProCon.org by phone on Jan. 19, 2011 that no announcement has been made regarding when the program will begin.]