I take Baclofen at bedtime 20mg, It allows me to sleep through the night without my legs or upper back muscles waking me up. I also take it during the day if I know I'm going to up and down a lot.
Baclofen works pretty quickly (60 min or so) and has a serum half life of about 6 hours. Some doctors have you take it every 8 hours. I tend to take it at bed time on a regular basis.
I also take Tegretol for TN pain. That I take every 8 hours like clock work. If I forget, my pain returns within a couple of hours of the missed dose. It takes about 60 min after a dose to get the pain back under control. With Tegretol, your doctor needs to keep an eye on your sodium level about every 6 months.
Those are the drugs I have experience with.
Kerri - did the doctor give you a titration schedule to use for the baclofen? You really should gradually increase the dose until you get to an effective level. Also, keep in mind that you should not stop this drug cold turkey
It is frustrating to have problems and not be on drugs to help - if you trust your neuro you will have to continue exercising patience. As for the questioning family and friends, I would just tell them I will share that news when and if te time comes.
I'm sorry you facing those types of quesitons. You need support and not suspicion.
You hit the nail on the head when you said everyone is different, thus there really is no 'norm' and no straightforward answer to your question. MS manifests in so many different ways, and treatment plans are tailored to the individual patient, not to the disease, if that makes sense. Some start DMD right away and don't need any other meds, esp early in the disease course when symptoms may be more likely to fully remit. Others have a barrage of symptoms that are treated for years before a diagnosis is confirmed. For some the symptoms you mention, some common meds you'll see people discussing here are:
Spasms and stiffness: Baclofen
Fatigue: Provigil, Ritalin, Symmetrel
Cognitive/"foggy thinking": Ritalin
Tingling: Neurontin, Elavil
And of course, there are the first line and more aggressive DMDs to slow progession, and IVSM to treat moderate to severe relapses.
There is a useful chart posted on the MS Society of Canada outlining more extensively the various meds to treat MS symptoms. Note that it is not an exhaustive list:
I know what you mean about others around you thinking that your symptoms are going to magically disappear....Or others saying "I know someone with ms and she's doing just fine..." Or others avoid the question "How's it going?... Don't be ridiculous
But for the meds, my doctor ordered the prescriptions when I was in the hospital to eliviate my symptomes...The following week when I was out of the hospital is when he ordered DMD....
I take 300mg of gabapentin for my deep pain in my hips, 100mg amantadine for fatigue and 5mg of baclofen for spasticity.this is when I get up....
I repeat this dosage at lunch time....
After work I repeat this dosage minus the amantadine....
Hope you get the right treatment from your doctor...
Actually, Michael, I think 'How's it going?' is a pretty reasonable remark. It at least acknowledges there's something wrong. Naturally the person doesn't want any details, or maybe even to know how it IS going, but it's at least something.
The ones who say they know someone with MS who is just fine are clueless, but they mean to be cheerful. My experience with this kind of thing, from almost strangers, has been pretty negative. I've had numerous people tell me they know various MSers, all of whom seem to be in wheelchairs or dying.
Why people make comments like that is beyond me. They may be contrasting my seemingly healthy condition with those others, but still.... It reminds me of people who tell an about-to-burst pregnant woman all about their own terrible labor. Why???
Thanks everyone. I think I understand now.
Lulu....I do trust the neuro.
I don't want to be on anything that I shouldn't be on.
I am starting Baclofen tonight.
I was on concert a when this all started and will see the psychiatrist in a week or two.
I will talk to him about this.
My brother and PA. Suggested neuron tin for my cns. Any abrupt noise makes me jump out of my skin.
Lastly, would be the DMD if he decides to do that. He said I probably have ms so we'll see.
Thanks everyone...you're the greatest.