3 month MRIs and recheck update.

[inmoni5]

First I want to thank you all for being my support...you have all been absolutely FABULOUS!!

So had my MRIs today and my appt. w/MS Specialist.

MRIs- Compared to 5 active brain lesions in my brain in Feb. today I only have 1 active brain lesion!! YAY!! Go Copaxone!! Also the nurse did an awesome job with injecting my contrast and did not blow through my vein! The cervical and thoracic spine to my Drs. knowledge has no lesions however we are waiting for the Radiologists report to be sure.

The pain, muscle spasticity, tremors, and spasms are unfortunately here to stay....Hello Baclofen I took my first 10mg Baclofen tonight and it really helped, it didn't take it all away but it did definately take the edge off and offered me a bit of relief, I could actually walk

Just a question, why do they have you start Baclofen so slowly? Week 1- 1 pill at night, Week2- 2x per day, Week 3- 3x per day. I wish I could just start out w/ the 3 per day

So Doc said no need right now for Tysabri since it seems the Copax is working well...she's going to do another MRI in 3 months to make sure. I feel like the weight of the world has been lifted off my shoulders. Of course I still feel like it's chained to my legs but....what are ya gonna do?

[bulldogman]

Congratulations on the MRI results that is great news. I believe why they are starting the Baclofen slowly is to let your body adjust to the side effects. The main one being sedation in the beginning that can be pretty severe. I started with 5mg three times a day and worked up to 20mg over a couple of weeks. It does help reduce the spasticity and tremors. Good luck.

[Jules A]

Maybe it is just me, but I haven't ever heard of doing MRIs every 3 months. Counting the lesions is not an exact science so I don't know why he wants to see you so often.

[0485c10]

How many mri's have you had so far that has caused your doc to determine its aggressive?

2/2011 brain mri for diagnosis?
5/2011 brain,cervical, thoracic mri's to determine copaxone effectiveness(btw it takes copaxone 6-9 month to reach full effectiveness--so you haven't reached that yet)& possible pre tysabri base line?

3 more months you should have reached copaxone full effectiveness, so another mri in 3 months makes sense for starting a new med.

but it does seem premature to determine baclofen is here to stay after only 3 months, with no spine lesions. did she say why?

[salamandertom]

congrats on the working copaxone, and on having such a vigilant doctor! I think it is GREAT that your doctor is so agressive in watching you, and treating you.

I have been on baclofen for some time. I did not start that way - I just started right off with once a day - then when we bumped up to three times a day I just did it - not tapering or anything. I did something similar with gabapentin - but that seems really LONG with baclofen. huh. Of course I didn't go to med school yet so what do I know.......lol.

I was also told that my muscle spasms would probably not go away, nor my nerve "issues" - IE pain. I have been diagnosed just a bit longer than you. Not much at all. HUGS

[rdmc]

One reason some docs have you go slow on building up the baclofen dose is that getting rid of all spasticity can lead to noodle legs and a fall. Many MSers rely on some spasticity to keep standing/walking due to weakness in leg muscles.

I don't think there's a hard and fast rule about increasing the dose. When I was on oral baclofen (I have a pump now) the physiatrist doubled my dose (I went from 30 mg to 60 mg per day) without incremental increase.

Unfortunately the sleepiness doesn't ease for all...just depends on the individual.

[0485c10]

3-4 months prescribe symptom meds?

ms meds to slow the ms YES. symptoms meds not so soon.

this is a good personal site describing spacisity in ms and what else can cause it....i'll describe what he list

spacisity is caused by a disruption in the communication between the upper motor neurons and the lower motor neurons....

spacisity can also be caused by...

• noxious stimuli such as a skin lesion
• a bladder or kidney stone
• fractures
• tight clothing
• menstruation
• psychological stress
• extreme environmental temperature
• hunger
• an MS exacerbation
• treatment with some disease modifying or antidepressant pharmaceutical agents.

i had a period of time that i was spactic and it was from my med, so the doc changed my med...i have been spactic during an exasberation and i got better after the relapse ended a few years later.


Some of the detrimental consequences associated with spasticity are:

• interference with mobility, ability to exercise and the range of motion in joints
• negative impact on endurance and energy expenditure
• interference with the activities of daily living
• discomfort or pain Big consequence for me!!
• sleep disturbance Big consequence!!
• increased difficulty for caregivers (for example with transfers or hygiene)

wikki link to UML & LMN

http://en.wikipedia.org/wiki/Upper_motor_neuron

http://en.wikipedia.org/wiki/Lower_motor_neuron


it just seems to me a few doc's are prescribing prematurely, and giving a definitive prognosis on MS, which doesn't exist.

i was told to use asprin and reduce activities to tolerable sleep/pain level, patiently explained that i have the disease of MS and i would have to learn to live WITH it.

it kind of has forced me to regulate the items that magnify what MS causes, learn live with not medicate right away. i also take potassium, magnessium suppliments, make sure i'm hydrated, not hungry, not tired ect. & not overly medicated.

a part of why i agreed to go that route was because i know meds become ineffective to a person over time, so i wanted to save their effectivenes for when i really need it & not waste it when i can find alternate ways of dealing with it now.

after less then 6 months you both are going with a treatment plan that would scare me to follow.

and i use tysabri. i know the ms meds will become ineffective over time, but i sure do want the symptom meds to work when i need them to work..

[inmoni5]

How many mri's have you had so far that has caused your doc to determine its aggressive?

2/2011 brain mri for diagnosis?
5/2011 brain,cervical, thoracic mri's to determine copaxone effectiveness(btw it takes copaxone 6-9 month to reach full effectiveness--so you haven't reached that yet)& possible pre tysabri base line?

3 more months you should have reached copaxone full effectiveness, so another mri in 3 months makes sense for starting a new med.

but it does seem premature to determine baclofen is here to stay after only 3 months, with no spine lesions. did she say why?

Well, I think the aggressive thing came down to having the 5 active lesions in feb. as well as the flares being so close 4 flares from Aug. to March. When I asked her about the aggressive thing on Thurs. she said that it was being very aggressive at the time. ??? Ok....I get it, ms does it's own thing jumps ya hard and then can lighten up, I guess that's what mine is doing minus all the daily pain and spasticity. She said that tysabri was probably premature for now since it seems Copaxone is working.

Yes in 3 months we are just doing another brain MRI to follow up with the meds and make sure they are working.
They just called me yesturday and I have to go in on Wed. and have a neuclear (sp) medicine scan because they found my thyroid is appearing weird on the cervical MRI. I'll keep you posted on that.

She just said that the spasticity and pain will probably stick around....I've had that since before diagnoses and it's just progressively getting worse. I go back in June for med recheck and Physical Therapy. Then Dec. for a neuropsych test (the all day long one) as I have issues with my memory. I couldn't believe they were booked that far out

[inmoni5]

One reason some docs have you go slow on building up the baclofen dose is that getting rid of all spasticity can lead to noodle legs and a fall. Many MSers rely on some spasticity to keep standing/walking due to weakness in leg muscles.

I don't think there's a hard and fast rule about increasing the dose. When I was on oral baclofen (I have a pump now) the physiatrist doubled my dose (I went from 30 mg to 60 mg per day) without incremental increase.

Unfortunately the sleepiness doesn't ease for all...just depends on the individual.

I can see where the noodle legs comes into effect. The baclofen really helps with the tightness. I still have pain but some of the tightness is gone. It seems to take the edge off anyway. I think I need a higher dose

[inmoni5]

after less then 6 months you both are going with a treatment plan that would scare me to follow.

and i use tysabri. i know the ms meds will become ineffective over time, but i sure do want the symptom meds to work when i need them to work..

I completely understand what you are saying! The dose on the Baclofen is very low and it definately helps. I want to be able to be active w/my young girls and be able to get around well and not full of tightness and pain. I guess maybe that's not the best way to think of things to be worried about the here and now but...I want some quality as well and if th baclofen helps me stay active bring it on. When and if it doesn't work anymore well...then I will have to cross that bridge when I get to it I guess. Thank you so very much for your advice it makes me think about the choices I am making.

[rdmc]

I completely understand what you are saying! The dose on the Baclofen is very low and it definately helps. I want to be able to be active w/my young girls and be able to get around well and not full of tightness and pain. I guess maybe that's not the best way to think of things to be worried about the here and now but...I want some quality as well and if th baclofen helps me stay active bring it on. When and if it doesn't work anymore well...then I will have to cross that bridge when I get to it I guess. Thank you so very much for your advice it makes me think about the choices I am making.

Just my 2 cents, but Baclofen, or other anti-spasticity drugs are very useful. They return ROM (range of motion) so you can stay mobile and keep moving. Spasticity, if allowed to progress, can cause contractures and pain, it can put you in a wheelchair and take away your mobility. The anti-spasticity drugs relieve the tightness, help restore range of motion and allow you to keep active.

I had a baclofen pump implanted a few months ago because the side effects of the oral baclofen (at the dosage I needed to take it) were not compatible with my life (I was tired of falling asleep at my computer while working.)

Before the pump, I had trouble getting around my house, had constant pain, and my gait was very affected. Now I look pretty much normal when I walk. The contracture at my ankle is relieved, and I can be much more active...plus the pain is eliminated w/out the use of pain meds.

Spasticity is a very common symptom for MSers...it needs to be managed and can lead to a much higher QOL when it is.

[SNOOPY]

Just a question, why do they have you start Baclofen so slowly? Week 1- 1 pill at night, Week2- 2x per day, Week 3- 3x per day. I wish I could just start out w/ the 3 per day

Many medications need to be increased slowly, usually because of side effects. Baclofen is one of those medications.

If you go off of Baclofen you need to decrease the dosage slowly. If you just stop taking Baclofen there is a chance of seizures.

I like Baclofen and have used it off and on through the years.

Unfortunately, for some of us, it can be a fine line when treating spasticity and being able to walk. I deal more with stiffness but I need some of that stiffness to continue walking. The dosage you are working up to I can't take, my legs become too loose (jello legs) and I will be unable to walk.

A non-medication option to treating spasticity is exercise: gentle stretching, walking, biking (stationary or regular), yoga, swimming, ect. Anything that keeps you moving. Working with a Physical Therapist (PT) can be helpful.