Pain in legs relieved but am I ever TICKED OFF!!!

[Rena705]

Hey all...I am in a mood right now that I don't think my doctors would want to be anywhere within 10 miles of me.

I am taking Baclofen and it is doing wonders for the spasms in my bladder and the pain is GONE!  Feels great!!

I have been complaining to my docs about the pain in both legs for the last 4 years and I have tried pretty much all the drugs like Tegretol, neurontin, topamax, elavil you name it but we seemed to have things under control until about a month ago.

About a month ago I started having the same pain as I had before and since I have started taking the Baclofen....drum roll please...the pain in my legs has dissipated considerably!  Seems to me that would indicate that I was having "spasms" in my legs all along and this med would have changed my outcome considerably!!  However, the moronic docs I had to deal with seemed to think that I was faking or something!
I was having excrutiating pain in my legs especially at night when my legs were horizontal so it was getting to the point that I have had to sleep partially sitting up to alleviate the pain.  Now that I am on the Baclofen, I have had two nights of very minimal pain in either leg while lying down and the pelvic pain has all but disappeared!  

So, I would like to know what you all think of this sudden alleviated pain in my legs that I have been dealing with since October 2006 suddenly virtually disappears when I start taking Baclofen...could this be legs spasms related to the MS that have been keeping me in pain the last 4 years?  
Sorry for being a little short...my temper is at it's limit right now and it's ready to blow.

Rena

[RedFlame]

Hi Rena,  I totally understand your anger!  It is certainly justified.  

It's been a long hard, painful journey.  I kept thinking that I would have a doctor that would come in and tell me exactly what I had, at which point I would say:  "now can I have proper pain control".  I finally do have Vicodin, Flexeril, Tramadol etc....

I have read some articles recently that talk about the fact that our pain is not being taken care of.  

Here is my rant:  How is it that drug addicts can get hundreds of narcotics like vicodin, morphine, and oxycontin along with Valium, Xanax etc?    Where are they getting these drugs?  Why is it that those of us who need pain relief are not treated adequately?  I would never sell or abuse the medications that I have.  I just don't get it.  

I have been referred to a pain clinic at the University of Michigan.  There is only one doctor who specializes in neuropathic pain.  I am still on a waiting list with no appointment or even a phone call yet.  

I plan on asking for a Baclofen pump, I want it inserted where much of my pain comes from.  Then I want 'MSContin' that I have heard people talk about.  

OK, now I am really all over the place.

Thanks for letting me rant!

Red  

[msgrigioilcavallo]

I'm not a Dr. so, I don't know if the spasms are from MS or something else.  I do have friends who don't have MS but they have alot of muscle spasms due to bad disks in their backs and their Dr. gives them Baclofen for that.  It seems Baclofen may be used more and more outside of MS treatment.  I'm glad the Baclofen is helping you though.  I, too, get so frustrated with the suffering and lack of help from the Dr.'s.

[marymoto]

Hi Rena i take baclofen it really helps the spactisity and the cramping also helps with the stiffness and spasms in my back.

[sadie405]

It's the worst, not trusting the very people you are handing your life over to-- it's hard enough when you do trust that they see you as you are. Hugs,
Sadie

[supermum_ms]

I'm not really sure what to say, i'm no longer surprised when these things happen, i'm not saying its fair cause its bl--dy not, just not surprised. I feel like i'm sort of in the same boat so dont have any solutions but i really wish i did!

I hear you!!

JJ

[Audrey_M]

Rena:

Should have let you rant more...after all, that is one of the healthy parts of this forum, being able to get it all out in a safe place.

I was too wrapped up in my own situation and did not give you the space I should have to allow you to let loose.

My apologies...rant some more and get the validation you deserve!

Audrey

[Rena705]

Well, I can relate to not dwelling on the past but it just makes me soooo angry that these neuro's can make many of us suffer more than we already do with our symptoms.  I read your post but I didn't really know what to say to you either...I also think that this Baclofen isn't gonna be for me in the long run.  I am having a little trouble with my vision and I don't think it is mixing with my other meds to make me, well, stoned for lack of a better word!

I can relate to what you are going through as can many others here as well.  Limboland is not a great place to be!  I hope you get in to see a neuro for a second opinion before you see the Rheumatologist because that is a long time to wait and I think it won't hurt for you to get a second opinion.  It's not abnormal to have to wait to see a Rheumy a long time as there are not a lot of them around.  I saw a Rheumatologist as well and that was after I was diagnosed with MS years before...the neuro didn't think I had MS!!  Turns out I do and now I have found a great Neurologist and I found him through a girl right here on MedHelp!  She lives in the same province and goes to the same clinic...small world here!

I hope you get the answers you  need soon and in turn relief for the pain and suffering you are experiencing.  I agree with you that I need to look at the positive and don't dwell on the past and I won't...but I needed to get that out and I also am hoping to find out if people think that my leg pain is related to MS since it responded to Baclofen.  Please let us know if you get an neuro appointment in the near future or what ok?
Talk to you soon,

Hugs,
Rena

[jensequitur]

At this point, I just throw up my hands and give up.  I've been telling my neurologist about the pain in my chest, from my spine to my esophagus, the numbness in my back, the weakness in my legs...  sheesh, I could go on.  All symptoms pointing to lesions in the spine.  Well, I had to go and look for a 3T MRI in my area, just to prove to him that there were lesions in my spine.  There were several.  I had to ask him specifically for Baclofen - he didn't know that Baclofen is on the Walmart 4 dollar plan.

And yes, it does the trick, most of the time.  I've had such an escalation of spasms in my legs that I have to wonder if there's something else going on - it's breaking through the normal relaxation that Baclofen provides.

[Audrey_M]

I'm not dx'd but am my mood parallels yours.

My complaints also seem to mirror yours and it is so frickin' hard to be in pain that makes it hard to think, eat or sleep.

I just posted about having to wait 5 months for an appt. with a rheumatologist because the neuro thinks my symptoms may not be neurological.

Don't know what more to say, other than I can empathize with you and am glad that you are finally on some meds that do relieve the pain. Hope I join you soon.

Enjoy the relief from pain and try to focus on the positive and look forward, not backwards. Good to get the emotions out, yet try not to dwell on them.

Audrey