Your experiences? - Multiple Sclerosis Message Board

brclrk80 · 08-31-2008, 10:40 AM

Alright, so it's a lonely Sunday and I am stuck here by myself. I've been thinking about some things and I would like some input if possible.

I have been diagnosed since 8/13/08. My neurologist, who everyone says is the best in the area when it comes to MS, has YET to identify what type of MS I have; all he will say is it is acute. I have been experiencing a gradual increase in symptoms and severity of symptoms since mid-June of this year. I have had two sets of 3 days of 1000MG IV Solu-Medrol. I am also on 600 MG of Neurontin (which is a low dose) and will begin Rebif next week.

I am a little discouraged since none of these things are helping in the slightest, yet he keeps saying that I should see some relief soon. Well soon has come and gone and it is nowhere to be seen. I pride myself on being a strong person and not letting these things get to me, but there is only so much a person can take. No, I am not giving up and I am not letting this get the best of me, I just want to see a little relief; God willing.

So all of you out there, with all of your experience with this disease and its unpredictability, I would like to know something. When you had your first major onset of symptoms, how long did they last? If you had the steroids done, did you respond, and how quickly?

Thank you all for your support, not only for me, but everyone else too.

MSNik · 08-31-2008, 12:02 PM

Hi there. Im sorry you are having a down day. You are asking good questions though. Youve only been dx for 2 weeks- this is an overwhelming and confusing time in your life..it will get easier and you wil cope better. I think that once you start taking control of your disease, with Rebif- youll feel better, I know I did.
Since you are starting Rebif we can tell you that your MS is relapsing/remitting. None of the injectables are prescribed for any other form of MS...so there is your answer on that.

My first onset of symtoms, which led to my dx were in August of 06. My original symtom was waking up with a numb, tingling hand which I thought was carpal tunnel and then, a pinched nerve...neither were found and MS was discovered. 2 years later I STILL HAVE A NUMB TINGLING HAND AND FINGERS and have learned to live with it...its worse in the summer and the heat/humidity..but it hurts all the time and never lets me forget it is there. For many people, their original symtoms go away and never come back. My nerve damage was too extensive.

I also had a round of IVSM (solumedrol) and it did NOT help...yet, a few months later, I had a bout of optical Neuritis, was treated again with IVSM and it did help. 3 days is a very short treatment. BOth times I was given 5 days...that seems to be standard with most neuros...anyway, to answer your question IV solumeddrol will only help some people, some of the time and the more you do it, the less it will help..its not a good thing to be dependent on.

Rebif, on the other hand, will NOT help the orignal problems you are having, but should stop new symtoms, new lesions and new activity on the MRI...in my case, its been wonderful- but I wont lie to you. The first few months of side effects were bad- and I had the one relpase with the optical neuritis. I was positive that it wasnt working for me...by month 5, I had no more side effects at all, and have not had a relapse or new activity either...I love Rebif!

When you start it, youll have lots of questions, shout out to me if I can be of any help...but remember that it takes 6 full months to build up in your blood stream, and during that time, it can take the wind out of your sails, This is heavy duty medication, but honestly, it gets so much better once it starts to work. Your energy level returns, your fatigue is not as noticable, you overall feel better, you just have to remember that when getting thru the bad stuff in the beginning! I have lots of hints and tips for you...but wait until you have seen the MSlifelines nurse, and then ask.

For the record, not many people get relief from Neuronitin- some do, many do not..it seems to help things like toungue and mouth issues alot better then leg or hand/arm issues..I stopped it when I got to 600 mgs 3 times a day because all it did was put me to sleep....it gets easier, promise!

take care of yourself...you are doing all the right things, and Rebif will make a difference in a few months.
Hugs
Nikki

Nenu · 08-31-2008, 01:37 PM

It took at least a week after my last dose of steroids before I began to feel relief.

A lot of symptom management is trial and error it seems. For example, Neurontin has worked for so many people. For me, it didn't help 1 bit, and the side effects I experienced from it were horrible.

Meanwhile, Amitriptyline has helped with the type of pain I experience more so than Neurontin ever did. You'll find just as many who say Amitriptyline has not helped them at all.

There are a lot of options for you to explore, so if you don't find that Neurontin or whatever other drug you try helps, speak with your neuro about other options. Keep in mind that Neurontin itself can take a while to become effective as well.

sunshine149 · 08-31-2008, 03:36 PM

In 1997, I developed ON in the left eye and then numbness from the pelvis down and my left knee was buckling. I was hospitalized for 5 days, during that time I was given IV steroids and while on them, symptoms abated but when I came home from the hospital, I felt like a truck had run me over and this lasted several weeks. All-in-all, it was about 4 months before I felt "normal." All symptoms did do away. In the past 11 years, this is still my worst flare-up by far. The first and the worst-

I was pretty miserable during that time, not knowing what was going to happen but I'm still here and things are going pretty well. I am also a Type I diabetic so I will not, for health reasons, agree to any more IV steroid treatments. I have also tried neurontin and it did nothing for me but give my horrible side effects.

My worst complaint is fatigue. I am not on any conventional drugs to treat MS, instead I use diet and acupuncture and Chinese herbal therapies.

Welcome to the board and I'm sorry to hear about your diagnosis AND especially that the meds aren't helping... Keep us posted-

Bearygood · 08-31-2008, 03:44 PM

brclrk80, I'm guessing that your doctor will not commit to what type of MS he thinks you have because enough time hasn't passed to see how well you'll recover from this flare. It sounds like a bad one -- I'm so sorry and also sorry that the steroids haven't offered more relief so far.

I know you feel discouraged but you are SOOO recently diagnosed. It takes a while to see what's going to be and even get used to being dxed. I can tell you that while I was not in terrible shape when I was dxed (what turned out to be ON is what brought me to the doctor), I DID have other sx -- just nothing I couldn't (and didn't) dismiss.

In the 18 months that I have been dxed, my sx are still intermittent. Some days I don't even have a reminder (and I've had both new and old sx visit me during that time). But in the original stretch of time, I'd say that even though I was relatively mild, it took me probably around 9 months to realize that some of my original sx had ceased.

Please try to chin up and try to believe that you WILL improve. Honest, time has been very short. BIG (((HUG))!!