And by pain I mean pain so bad I am throwing up. My husband caught me with a back scratcher pushing it into my leg to have a different kind of pain. I am about to lose my mind.

I just recently went through that last week. I never try to go to the hospital because they don't know as much as my doctor does about me. I always call my doctors office and tell my nurse. She then normally talks to my doc and then calls in some meds to control it. Have you tried talking to your doc about it recently? I would try that first.

Can you take magnesium? You could eat foods rich in magnesium too. There are other things besides pain meds. I've heard of intravenous magnesium and, of course, I always stand by oral magnesium which I take every day. HEre's one article I just googled: http://www.direct-ms.org/sites/default/files/Magnesium%20MS%20spasticity.pdf Also, feel free to look of Carolyn Dean, or Mark Hyman, or Russell Blaylock, just to name a few doctors who has raved about the miracle of magnesium (also the name of Dean's book.)

Magnesium dose starts out small and builds up gradually; otherwise it can upset your system. Also, either magnesium citrate, or citrate/malate are the better absorbed versions.

I'm sorry to hear you're in such an awful situation. Stretch those legs and if you haven't already, try the magnesium.

I think I am one of the few MSers that has never been hospitalized.

Tara I have mentioned the Baclofen pump before, Every thing you say fits the profile to do a trial - maxed out on baclofen, the type of pain you describe, the desperation you feel.

Have you discussed this with a doctor? There is Botox and phenol and trigger point injections, The pump is next. I've done them alI, I had the pump trial last week - spasm pain gone 4-6 hrs. Felt like I was floating in a warn bath,

Magnesium and muscle relaxers don't touch the intensity of this level of spasticity. Have you talked to someone about it?

Hospitalization for same day trial is what it sounds you might need

These are the options. Any questions don't hesitate to ask.

Melanie

I am sorry to hear that it is that bad. I hope you feel better soon.

I am also maxed out on Baclofen
I have severe muscle spasms violent ones that arch my back backwards and snap my head back it has torn muscles when this has happened.
for me they give me ativan under they tongue it seems to help but it does make me tired.
at other times it seems to be a slow spams I tighten up and can not relax once again I get the ativan and hot packs I also use a T.E.N.S. machine when the pain is at it worst it helps allot.

I am also on high dose
calcium and mag and vita D
although they do not seem to help much

hang in there

As Kayce said spasms can be severe. Mine threw me out of the wheelchair in the beginning. My doctor said they can herniate disks. Since I already have 3 herniated discs I am trying everything. The next step is the pump but it doesn't work for everyone.

Ativan never worked for me but it's a valium-like med it may work for you. If your pain is from these kind of spasms there are ways to treat them I understand you can't tolerate narcotics but oxycodone will short-circuit them if I get it in before they hit.

No dr told me - I found out by trial and error.

Good Luck - talk to your Dr. and DESCRIBE what they feel like. I showed him a video of them happening and he went straight to Botox but that doesn't work anymore.

Melanie

I had a Baclofan pump implanted. I was maxed out on both too. I was in so much pain I couldn't dial the phone. Pump helped. Every now and then I get it turned up, take an oral Baclofan, or pain meds. I still take tizanadine 3x a day. Tried to wean off it but found the pain started to return. If you have more questions about the pump please let me know. I am so sorry you feel so bad.

Thank you so much for all your advice. I said several years ago I would do ANYTHING to avoid a pump. And am now seriously considering it.

But I am with an idiot doctor now who wanted to put me on Soma.

I said no, I hate Soma and it is not appropriate for MS spasm. He then, as a 2nd option suggested Baclofen. I told him to check my chart, I am maxed out.

Why would he suggest Soma before tizandine and Baclofen.

I am going out of state to see a real MS doctor. Also located at the same hospital is a neuro that specialized in muscle disorders in Parkensons, MS and such.

I think between the 2 we can figure this out. I want an in hospital trial for the pump. I am more than open to it now.

Unfortunately that is not until August. But sooooo happy to have hope.

Thank you all for the advice. Sounds like the pump could hold promise for me. Worth finding out.

Hey Tara,

Sorry you are having such a hard time with these spasms. I know at least one person with a baclofen pump. It really helps her BUT please check out the doctor first. Her first doctor didn't install it correctly and it had to be redone and it was miserable. So just make sure that the doctor knows what he/she is doing. But I have heard it makes a tremendous difference and I don't think that she was in the kind of pain that you are.

So sorry that you are feeling so bad. When I am Tizanidine, it makes me very sleepy and is really is a sleeping pill for me and makes me pass out quickly so I have to be very careful with that one. But I can't imagine throwing up from having so much pain.

It pays to be the squeaky wheel. The squeaky wheel gets the grease. And you need grease.

I went to the ER last week. It was the first time I went voluntarily and it was the easiest time I have ever had. I was in and out in 2 hours and the doctor was better than anyone I had seen. He knew exactly what I had when no one else could figure it out. It was such a relief and didn't need a ER visit but he sees what I had a lot in the ER (I slept on a sleeping pad and burned myself). I never knew that I could burn myself with one because it didn't hurt. Anyway, that was all it was. So perhaps the ER could send you on a course of relief. Perhaps that would stop the pain.

Gosh, I hope you get some relief soon. If you don't have a good feeling about a doctor, change doctors. There are a lot of idiots out there. The first doc I saw for my back burn said I had either a Brown Recluse spider bite or a MRSA. Both of those were scary so a burn was so much better. Perhaps, finding the best doctor can really help.

Best thoughts going your way.

Has the trigger point injections worked for anyone? I'm scheduled for them in a few weeks.

Agree with Ezone - pump trial is out patient same day procedure, To see if its even appropriate. It has to be put in by a neurosurgeon. And refilled every so many months. If you have to have an MRI the battery has to be turned off first.

The pump is made by Medtronics

http://www.medtronic.com/patients/severe-spasticity/living-with/index.htm

Check with them for a doctor in your area

Melanie

When the pump started working, she said she didn't realize how much pain she was really in before. Get the rght doc and you will feel relief. Also, before the pump, she also got valium besides maxing on baclofen. Can you get that?
Best wishes.

I am scheduled to see a neurosurgeon next week for a consultation regarding a Baclofen pump. I have been in so much pain I have both MS and Dystonia and woke up one morning around the end of October with pain in both arms from the shoulder down. It has continued to get worse. By January I was not sleeping much at all.

My neurologist has tried muscle relaxants, prescription NSAIDS, increasing my dose of Topamax which helped with Trigeminal Neuralgia and does help decrease my dystonia symptoms to some extent, I did have Botox in October, she offered to give me Botox again, but honestly it only worked for a short time the last time. I've tried massage which did not help. I've tried heat. Feels good, but doesn't help. I tried Lortab and it didn't help. I'm on Skelaxin because Zanaflex lowers my blood pressure and heart rate too much and causes fainting even at a very low dose and actually neither of them help with this pain anyway. I'm also taking Carbo/ Levo-Dopa and it has reduced the pain from the Dystonia slightly. I thought it hadn't and tried weening off of it and the pain became much worse. I'm on 60 mg a day of baclofen. My neurologist let me increase it to 65 mg and the pain was still not tolerable so she said to go back to 60 mg until I see the neurosurgeon. Some days I just feel like crying all day. I'm still trying to work full-time so this has been a real trial. I am in pain 24/7. The pain makes me nauseated as well. I take ginger root 3 times daily and wear sea bands on my wrists to keep from throwing up.