Actually, a long intro is just fine - most of us like to help however we can. I've found that your overall mindset and health can affect your symptoms greatly. If you can't run, walk. What I do is slow down to what my body feels comfortable with and then I begin adding some more minutes or quicken the pace a little. Listening to the body is always helpful.

I don't think prednisone has an interaction with anything except our long term health. If I've absolutely had to have something, I've been opting for the IVIG or I-V Gamma Globulin.

Go ahead and ask away - I've found everyone on here has lots of experience and info to share so, the more the merrier all the way around.

Hugs,
~Lorrie

Sounds like a relapse to me. I would keep up with the Betaseron, it wont really make you feel better but should help prevent further attacks. One thing to watch for is depression. It is a possible side effect of the Betaseron. It is also very common in people with MS but is easily treatable.

For the weakness you have right now, you can either wait for your body to heal or go in for a steroid drip. Whatever you decide to do, now is the time to look into some physical therapy.

What country are you in? I hope you feel better soon!

My onset was very aggressive also-I simply woke up one morning, and could not walk. The pain was so intense. I do know what you mean by feeling like a puppet. I would tell my doctor that my legs felt like they were made out of wood. I am now walking although I can't go very far. I would stay on the Beta-it may just take some time for you to get some or all of your strength back. Chin up.

Betaseron can take 6-9 months to become fully effective. For me, this medication completely turned my life around.

Betaseron does have patient support programs though. You can call the betaseron help line and they can help connect you with a neurologist or answer most of your questions.

The nurses they have on staff are very informative and very helpful.

I need to think about your intro & like lorrie wrote in her response we like help & it is helpful for us if we understand the situation....internet advice is notorious for being mis guided. we like to avoid being a part of that.

question #2 (easiest) no problem with betaseron & prednisone. my first relapse after i started beta, the doc ordered 5 days IV steroids- my first thought was great i don't have to do those beta shots for 5 days.

the doc cleared up that idea and made it clear that i would have to do both.

I was like.. what do you mean? i have to do both not choose one or the other? what's the benefit of reporting a relapse if i don't get a vacation from my beta shots and have to do steroids Too? :(

Yes you can do both.

MY question to YOU first: how many pregnancies in the last 5 years when your ms seemed to be dormant & how long has it been since you stopped breast feeding...

MS is less active during pregnancy & breast feeding --because the immune system throttles down during pregnancy so the body does not identify the fetus as a foreign substance and begin incorrectly attacking it.

then after the pregnancy & breast feeding the immune system returns to normal and may overshoot for a while and cause ms to be more active. it is important to restart an ms med immediately after breast feeding for this reason. actually if that is what you have going on--prednisone doesn't sound like a bad thing to do right now.

how long are you thinking about using prednisone? just remember that steroids use has an optimal. when need its a very good thing--but it does weaken bones/teeth, messes with the blood sugar & causes weight gain. DAMN, that weight gain! :(

I just said i think prednisone for you is a good idea-=-just to be cautious of not planning to use it all the time.

and the time needed to give beta to work.

Question #1 is more difficult. i'm not gonna try that one-my mind doesn't feel like cooperating that much right now. your pregnancy just jumped out at me & i felt a need to reply about that.. but i will give you a link to an article i really like.

http://www.mscenter.org/images/stories/InformsSummer09lowres.pdf

and a few more of my favorites...

http://www.mult-sclerosis.org/howms.html

http://www.thjuland.net/0site.html

Wow! Thank you for the advice! I was hesitant to write in because I feel this is my problem--no one wants to hear it. But reading your responses made me feel so relieved to know I can find support from anywhere in the world. My husband is military. We are stationed in Germany. They have great medical care on the economy, but even though my husband is fluent in German, the doctors treat patients differently than in the US. More like subjects than actual people. I started seeing a military neuro, but his focus is on the troops coming back from a list of places who are worse off than I am.

I took 300mg of prednisone today, and my balance has improved. Also, I feel slightly more energetic. We shall see how the rest of the therapy goes.

I had one pregnancy, and I breastfed for 20ish months. Many think this is a LONG time, but I had nothing else to do! My symptoms surfaced about 9 months after she was born. I did not think anything of them at that time because I have always been klutzy, but they were definitely noticeable around 14 months. When she started walking, I started sitting.

My first question may have been unfair to ask, but that is the question keeping me awake at night. I am sure I am not alone. I really hope the Beta works quickly. I am bumping up the titration to one week instead of two for every increment. Hate the pain, but love knowing this may be my ticket to better health.

Again, thanks for responding to my post. I hope you are all feeling well.

Warmly,
A

Hello Arany,
thanks for responding with more details..i gather your new to ms altogether?
I have some mixed feelings about your response of ms not being to priority as I go for infusions for my ms. i'm fully ambulatory without assistance, often in a room with ms people much more greatly affected by ms than me--so i understood that part of what you wrote.

i'm sad that at a time when you need attention for a new serious chronic illness it has to be pushed aside for more acute needs of others. but that's just the way it has to be. i am always very proud when i hear in the news a soldier is being flown to germany for medical care-knowing they are gonna get the best care available. mixed feelings.

i'll try question #2 now. i am trying to answer it with a belief that you are totally new to ms.

even doc's in the us are not very good at explaining ms and leave it to support groups to provide the details.

even if you had been diagnosed in the US, you would have had to find your way to one of these groups to get information. glad you found your was to ds.

doc's don't explain it well because its such a grey difficult disease to explain, 100% of the CNS can be affected and the healing from ms demylenation can be anywhere between 0-100%. early in the disease its mostly 100% and later in the disease it goes down.

I'm really not sure how much you know about ms-so forgive me if it sounds like a speal...

The definition of a relapse is new or worsening symptoms lasting at least 24 hours and seperated by at least 30 days from the last relapse.

thats the definition of a true relapse-there can be psuedo relapses too. ms symptoms can worsen under heat, stress, virus. the ms symptoms improve once the conditions that caused them to worsen is removed. Summer heat is not good for us. :(

think of ms like this, the nerve is demylenated which is like a frayed electrical cord in the attic. the cord supply a lamp. the lamp works just fine when it is cool but flickers in the attic when it gets hot.

to identify if it is a relapse..first are there any circumstance that could have caused a psudo relapse.?
did you get hot while you were excersizing? are you under any stress? do you think you might have picked up some kind of virus like a cold,flu,sinus infection? is your baby letting you sleep through the night yet?
has it lasted for more than 24 hours? are you able to remove possible environmental factors that might have lead to a pseudo relapse?

now...MS treatment is in 2 parts a maintenance med, your betaseron and steroids when symptoms are acute.

the maintenance med slows down the ms, reduces the severity and frequency of relapses. the maintenance med does not repair the damage ms has done, it only slows ms down.

its the body that repairs the damage--scars the lesions, just like if you had a cut on your hand you see the body scaring the cut. first the cut scabs over, your careful to to bump or scratch it and start it bleeding again. then the more permenat scar forms over the cut and you don't have too worry about bumping it any more.

its called listen to your body, don't push it. allow it to heal from the relapse.

there is a race going on inside your body...ms trying to demylenate the nerves & your body tryng to repair the damage. eat well, avoid stress,stay cool, get enough sleep and allow your body to heal the damage that ms has done.

the betaseron you are taking gives a competitive edge to your bodies healing ability in the race by handicapping ms ability to do more damage. ms continues to do more damage just hopefully slower than your bodies ability to repair

the steroids reduce inflamation. the symptoms of a relapse are caused by the inflamation that happens after ms has demylenated the nerve. the inflamation impinges on the nerve and makes it conduct less or in some cases stops the signal conduction. the steroids reduce the inflamation and the severity and length of time of the relapse.

ms often has fatigue with it ,caused because the nerve may need to send a signal multiple times to get it through to its source. having to send signals multiple times can cause fatigue. (but i was running 8 miles, 19 years after my onset symptom--so i don't want to make it sound like fatigue has to happen to you now that you have ms--more so you understand fatigue if it happens to you.

btw- my doc told me like this..."you have ms. you no longer have a 'normal' instead you will have a series of baselines and every succeeding baseline will be less than the previous baseline"

I had to find out the rest on message board, including what a relapse was. he started me on betaseron too.

Thanks for taking the time to write such an informative post. I understand the disease a little better now. My research has been primarily on the internet. When I have a question, I google it. Looking for reputable sources, of course.

I finished with the Prednisone therapy, and feel much better (70% better). I need to find a local place that will administer the IV if needed. From what I understand it works faster and better than the pills.

My dose of Betaseron increased last night to .75ml. I'm not doing too bad. Nothing that a little Advil can't fix! We were thinking about having another child soon if I feel up to it. The problem is I will have been on Beta for three months then need a washout period of two months. I don't know if this makes sense or not. We shall see.

I see a NY in your name? Are you from NY, or is it just a coincidence? That question is probably not appropriate since we are strangers on the internet. I don't know proper message board/chat room protocol. I'm new. I am originally from LI.

The information I got from everyone is more than I received from my neurologist. I am really happy to know other people are out there to help one another during these tough times. Thanks!

I hope you are feeling well!
A

My relapses turn out to be worse than the last one & I never fully recover between them. I may have better days then others, but it's all relative to the day before.

So yeah, relapses can be quite aggressive.

Symptoms can be quite aggressive as well, relapse or no relapse...At least this is what I found out with my MS & MS Epilepsy.

It all depends on where the disease is damaging your body & how much or how little it is doing so & also what stage of MS that you have.

I hope today is a little more manageable than yesterday.

Take care,
Stay sane!

I agree...I really liked your explination of MS & a relapse & such...very informative. I'm gonna show it to my Fiance...explains allot & in a way that I can understand. Hehe!

Hello and welcome to DS,

Sorry you are in a foreign country and not getting a real focus on your MS by the docs.

The 2 URLs below are to some good info. I highly suggest the second one because it has to do primarily with inflammation. Reducing inflammation naturally day to day might lessen your symptoms withOUT negative side effects.

All my best to you,
EP

http://www.ramswebsite.net/What_Helped_MS.html

http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/11259394
The whole purpose of steroids being prescribed by those with MS is to decrease the inflammation. Thus the reason for this post. The ISSUE is that LONG-term steroid use leads to damage to eyesight, liver, skin, & bone density loss, etc. This is because artificial steroids are 4x (predinizone) and 20x (sodumedrol) more potent than natural cortisol produced in the morning in your body to wake you up and make you hungry. So if you have to take steroids try to take them early in the morning or at lunch when you are higher on them. They will make you more hungry (this usually leads to weigh gain while you are on them) and inability to sleep.

Some of the negative side effects are due to the reduction in the ability to absorb Calcium (Ca) and leeching potassium (K). So speak to your doc about taking more of these vitamins with Vitamin D (tells your gut to absorb calcium), fish oil/ flax oil / GLA fats and magnesium to try and reduce the side effects (bone density loss that happens with not enough calcium).

Then if you try to reduce your inflammation day-to-day with ideas like the one above (at this URL) that you have discusses with your doctor maybe you can reduce the frequency and dosage of steroids and thus decrease the negative long-term side effects.

Germany is actually a pretty good place to be if you have MS. They have excellent physical therapy and good treatment for the disease, maybe even better than the US. Like you said though, you have to put up with the Doctors. Once you get over their bedside manner (and you are hopefully not a very modest person) they are actually not all that bad. I lived in Germany for a couple of years with my uncles family and he is a doctor himself.

Germany has several MS clinics and most cities have an MS support group. You should look into both. I would really try to take advantage of physical therapy. My cousin is a physical therapist and there are a lot of things you can do to help repair some of the damage and strengthen the rest of your system.

Hope you feel better! Message me if you ever want to chat.

Roz

its always ok to ask on a message board, as long an answer isn't required- anything i don't want to answer- i don't.

i think that's the rule on a internet message board. as it is, i'm not in NY and i don't mind disclosing my location as it is in my profile, so i share it any way. the idea of creating a login name with my state in is an intriguing idea though. perhaps i will do that sometime in the future.

my name you are gonna slap your forehead when you realize what it is, all i will say is for every problem there are at least 2 solutions. the solution that is thought of and the opposite.

your last reply set me off again. i use my computer as my memory, so i have hyperlinks to many articles. i will send you the links to subjects you expressed an interest in.

i have had no pregnancies, so i never had experience with pregnancies. much less pregnancies & MS. but the first person i really be-freinded on an ms message board, was a woman who was diagnosed with MS for 5 years. treatment was not recommended for her ms, just routine monitoring by yearly MRI's.

The MRI after her pregnancy showed so much more activity than before her pregnancy that she was advised to get on a med without delay. I was newly diagnosed. I was trying to learn everything I could about MS & she was trying to learn everything she could learn about MS and what her pregnancy had done to her MS.

We had both just lost our job through a mass layoff & we were both looking for jobs---my way of trying to make you understand why i have so many links on MS&pregnancy. Despite the pregancy issue, there was a little bit of solidarity between us-- like MS....I'll send you those links, but check the dates on them- because its been a while since i(we) found these articles. you may hacve aleady found them through your own google activities
---------------------------------------------------------------------------------------
DMD(=disease modifying drugs; copaxone, rebif, avonex & betaseron)
CRAB=first letter of first line MS drugs:Copaxone,Rebif,Avonex,Betaseron

gutimeracitate acetate = copaxone
beta interferons = betaseron,avonex, rebif


Of the first-line, injectable medications,
the beta interferons are FDA Pregnancy
category C agents (having been
associated with miscarriages in primates),
and should be stopped 12 months prior
to attempting conception. Information
about the pregnancy registries for the
beta interferon products is available at
www.nationalMSsociety.org/PregReg.
Glatiramer acetate is a category B drug
(no harm has been demonstrated in
animal models, but no human data are
available). Many, but not all, neurologists
recommend stopping glatiramer acetate
prior to conception.

http://www.nationalmssociety.org/download.aspx?id=1
-----------------------------------------------------------------------------------------

I was not quite complete when i said treatment of ms is a maintenance med and a med to treat acute symptoms of ms.

there is also meds to treat the symptoms of ms: symptom meds

there are meds to treat ms fatigue. you should know that these meds exist, but probably delay starting anything hard core until you find out how betaseron & diet has improved your fatigue while running.

here is another article about something as simple as OTC asprin at reducing MS fatigue. the article also warns about the risk of stomach bleeding with too much asprin. perhaps give aspirin a try on the days you need more energy and not every day to see if it affects your energy level. it does mine, i find tylenol helpful which my doc suggested i use instead of asprin because of the risk of stomach bleeding that aspirin has.


http://ms.about.com/b/2007/08/06/aspirin-as-treatment-for-fatigue-in-multiple-sclerosis.htm

I'll send a message with more links to articles about subjects you have expressed an interest in.

Lynn

Thanks again for all of your advice. I can't believe I waited this long to start learning about my disease. There is so much information out there--I was just in denial. One thing I have learned--MS sucks. I have not finished all of the readings, but I am slowly working on it.

Food is definitely important in keeping the disease under control. Of course, some people have a more extreme diagnosis, but a good diet is always important. I have seen many articles on vitamins and supplements to help combat ms, and my brain hurts to think about it. There are so many combinations and interactions between the vitamins--how do you keep track? I take 5000IU vitamin D and around 3g fish oil (epa/dha). Is DHA/EPA healthy? GNC triple strength filtered. I am looking for a nutritionist to set up a daily routine--also for my daughter. My mom has MS--I really want to do my best to prevent a third generation from getting it.

Steroids sound awful, but they get the job done. I am now able to walk my dog around the block. A huge difference from saturday--I haven't walked anywhere since Christmas. Since my Beta shots, I have had an amazing amount of energy. Maybe it's the meds, maybe it's mental. I do not think I need any other drug for energy just yet. The Advil I take is for the flu-like symptoms from the Beta shots. Hopefully, there won't be a reason to use it soon. I too, am worried about stomach bleeding and heart burn.

The doctors in Germany are very knowledgeable and competent. My insurance selected two doctors in my area. The first neurologist wanted me to start Tysabri for a year. He is one of the few clinics in Germany to administer the drug. He turned me off to his hard sell. The other spoke only German (maybe its a pride thing--I am in his country after all), but when I am discussing my future health I do not want a translator.

I am curious about Physical therapy to help MS. What would you do? What kind of exercises? Is it to strengthen or to relearn how to use that part of the body?

Again, there is a lot of information to read from your posts. I will definitely get to all of them. I hope you guys don't mind that I have been talking about me. This is therapy in itself, and has helped me deal with what I have become.

I hope everyone is feeling well.
A