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Old 06-07-2013, 07:48 PM #1
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Default Vent, breakdown, IDK....

Im so sorry to do this again, and so soon to boot! I started a new med, and I thought it was working, but no, I was wrong, again! My pain is off the charts the past few days and the meds are not working! My spastisity and nerve pain are making me miserable. I can only get maybe 1-2 hours of sleep at a time before the pain will wake me from a drug induced sleep.

Ive got spasms going from mythigh to my shin to my ankle into my foot, a muscle in my forearm is permanently tight and constantly in pain, my hands are constantly trying to curl into fists on me, my hands are in extreme pain from nerve pain and so many places are a painful numb (if that even makes sense!) Ive been taking lortab's for the pain, taking topamax for the nerve pain and baclofen and tizanadine for the spasms.

Dear God, bless my mini pharmacy and please help it work! Im getting worse rather than better. My walking is worse. My hand writing is way worse than ever. Half the time, my brain can tell my hand I want to write something, but the signal to actually do the writing doesnt come across and all I can do is hit the pen on the paper, and then my dh has to do the writing .

I am having extreme difficulty talking. I am stuttering, forgetting how to say words. DH and I play a kind of cheraids so he can figure out what the heck Im trying to say to him. OH, and talking on the phone to my dd is a trip. You ever play cheraids over the phone?? DH has to get in on it so he can tell her what Im trying to say to her!

Im finding myself not caring too much what happens to me from day to day anymore. DH says "dont you want to fight this anymore?" and I say no, not really. 21 yrs of fighting, Im kinda tired. I need a smack of reality or something. I know I have alot to live for, but Im having a hard time seeing it right now. I have a huge family, lots of aunts and uncles, 3 kids and tons of cousins and the only ones who are concerned about me? My dh and one dd.

Thats it... no one else. Not that they are not important, thats not what Im saying at all! I go to bed each night telling God that if He sees fit to take me tonight, I wont fight Him. For those questioning, YES, Im on anti depressants. They were just upped a few months ago at my recent dr appt.

I know there's folks that have had this longer than me, and worse. I think Im in a funk, and I just cant crawl out. I guess Im looking to my MS family for help. I get like this at times, and I need the eyes and hope of others that I have misplaced of my own. Thanx for being here and listening.
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 06-07-2013, 08:53 PM #2
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(((((Kittylady))))). Sounds like you are on the wrong AD. I've
been there and it's a funky awful, unnecessary place to be.
My Neuro was a Neuro/Psych and he helped me find the
right AD for me.
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Old 06-07-2013, 11:54 PM #3
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Praying for you. Wish I could do more, I hope they get your meds right soon. I think you need to get in touch with your doc and tell them this.
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Old 06-08-2013, 10:23 AM #4
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Kitty-

I feel so badly for you! Sending the evermost gentlest of hugs your way and offering up a quiet prayer that you find relief - and FAST. I agree with Sally - it sounds like that the anti-d is not the right one for you (at least anymore). I encourage you to find the will to demand your doctor investigate this.

When life sucks, know that we care
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Old 06-09-2013, 09:32 AM #5
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Is a Baclofen pump a possibility for you? Getting Baclofen, about the most popular spasticity med for a reason, directly into your spinal fluid. In my unprofessional opinion, it sounds like some of your pain, and certainly the spasms, tightness, and "fisting" hand are spasticity-related.

http://www.webmd.com/multiple-sclero...-baclofen-pump

They don't just to the surgery and hope for the best. It gets tested first by injection first.

I'm sorry you are having such awful pain.
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Old 06-09-2013, 10:00 AM #6
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I only have huggs for you, hun.....take care
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Old 06-09-2013, 11:36 AM #7
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Being in pain is the worst and certainly, exhausting and leaving open all those other feelings and emotions.

I hope you are able to get some pain relief. 21 years of fighting this illness, and I don't blame you for feeling down, right now.

Were you able to discuss with your dr the pain increase, yet? Is there a speeded up appointment in the works?

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Old 06-09-2013, 01:54 PM #8
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So sorry you are experiencing such misery...

Don't be afraid to tell your doc you need to try a different AD...

Also, my neuro tries different meds to alleviate the spastic pain. I'm on baclofen and clonazipam together. I was on zanaflex, which worked really well, but I experienced irregular heart rhythm and a low pulse, so I had to get off of it.

I hope you can be proactive with your doc and try different meds. I know for a fact that cannabis also quickly relieves spasticity.

Keep us up to date, and maybe you should also try to see a therapist that uses biofeedback. It trains your body to deal with pain. Again, we are praying for you and sending you (gentle) hugs...
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Last edited by Debbie D; 06-09-2013 at 01:55 PM. Reason: edit for clarity
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Old 06-11-2013, 01:25 PM #9
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Quote:
Originally Posted by Sparky10 View Post
Is a Baclofen pump a possibility for you?
I dont qualify for medicare until February, so I am waiting patiently as I can for February to roll around and I had planned on asking my neuro about that then. Thanks for the reminder.

[QUOTE=Debbie D;990765] I'm on baclofen and clonazipam /QUOTE]

My neuro has tried several different meds with me for my spasms. I too was on baclofen and clonazipam and it didnt work at all. Im back to the baclofen and tizanadine, its doing alittle but not enough, but at least its better than baclofen and clonazipam. I never wanted to try cannabis, or watever, but Im telling you, if they legalized it, I might be tempted right about now.
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 06-12-2013, 12:58 PM #10
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kitty,
i'm so sorry for what you're going thru.
please concentrate on what you can live for.
i think your post here is so well spoken.

i'd like to see you copy it and send it to your drs. maybe they can find it in their medical knowledge and hearts to re-examine your case and try to help ramp up your medical tx.

please don't give up. we're here for you. i'm glad you have your dh to hold onto.
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