will this stupid disease ever level off?

[shel67]

One day I feel okay, another I feel like these symptoms are worsening. One day I feel hopeful the next, I wanna give up.

I can't live like this... What can help? How do I do this?

[SNOOPY]

I can't live like this...

Yes you can, shel

It is normal to have really good days, really bad days and everything in between. Part of living with MS is learning to live with the ups and downs this disease can cause.

The diagnosis of Multiple Sclerosis is a major life event, it is common to go through the grieving process. This process can happen throughout your life with MS as new difficulties or symptoms show up.

Give yourself time to process and cope with this new and difficult life event. Enjoy your good days and try not to stress over the bad days. Relax when needed.

[BadAttitude]

"What can help?"

You could post more information about yourself, such as date of diagnosis, any meds you're on, especially disease modifying drugs, and other circumstances that illustrate resources available to you.
DO you have a support system? (Family, docs you like, employment/financial assets, church friends, mobility issues and transportation available to you, etc.... anyone else reading this feel free to elucidate further).

Anyone on here who has experienced similar symptoms/states of mind can tell you what they did to try to alleviate their situations, or share what they have read about it.

We'll help you if you give us a starting point.

[KatieAgain]

Shel

You just got diagnosed. And you are going through much of what most of us go through at diagnosis.

I have read through some of your previous posts and see you have sought help from the hotlines, NMSS, and your church. This is good.

As far as when things will settle down...pretty good chance they will. When I got diagnosed I had a few lesions and the only symptom was constant dizziness. It took 9 months for the Military Neuros to find a drug that allowed me to stay in the military and control my dizziness. I spent the first day in the Base ER being monitored for my reactions to the drug. Within 20 minutes of taking the first pill...my dizziness was gone.

You are going to find there are many drugs to relieve the symptoms. If you read all the side effects...you won't take any of them. That includes the DMDs.

Give yourself some time to adapt.

[shel67]

I am recently diagnosed. a few weeks. I began having mild symptoms 5 years ago that would remit. it seems in one day in Jan I woke up with symptoms that just kept adding on, nothing is remitting. MRI showed permanent damage. I am being tested now for DMD meds. I want to try Tysabri due to how progressive this has become. I guess it has always been active but it did its damage silently. I wish it was like I'm trying to deal with this. not a lot of support. I have my husband, No insurance, going for free care, so no nurse to call. lots of family, money issues. I have to work and its been hard but I don't have a choice. I don't know what do...

[Waydwnsouth1]

Shel67,
This may sound crazy but when I start feeling like that I go somewhere else in my mind. A place that makes me happy. Or think about old times that were fun. Times with my kids and now with my granddaughter.

I do that to get MS off my mind and so I don't dwell on it. If you dwell on it it will drive you crazy. MS is an ever changing disease. Minuted by minute, hour by hour or day by day. It will keep you on your toes. Everyday is a different day so in a way it keeps life exciting because you never know what to expect.

That's my two cents worth. Best of luck to you in the future!

[shel67]

Shel67,
This may sound crazy but when I start feeling like that I go somewhere else in my mind. A place that makes me happy. Or think about old times that were fun. Times with my kids and now with my granddaughter.

I do that to get MS off my mind and so I don't dwell on it. If you dwell on it it will drive you crazy. MS is an ever changing disease. Minuted by minute, hour by hour or day by day. It will keep you on your toes. Everyday is a different day so in a way it keeps life exciting because you never know what to expect.

That's my two cents worth. Best of luck to you in the future!

Hi, I'm in Louisiana too. Getting care at the MS clinc at LSU in NO. Have a good nuero,just not good access to him. I can't complain though. I've got a lot done so far.

[shel67]

I sent the message off before I was ready. Sorry.

I do know about going to ones happy place and escaping and I can't even do that. I know its stress and anxiety and I need to find a suitable med for it. I'm trying celexa . Well see.

I just can't deal with feeling better one day and worse the next. Like yesterday, the paranethisa felt worse, today the balance is better and the eyes are so so, but the arms feel weaker. Last week right arm felt better, left, not so much. Now they both feel worse. I think it's the tightness of the muscles that's worsen. I can't even tell what symptoms are what. I just wish my head felt normal. I just don't know how I'm going to do this.

[JerryD]

Shel,
I am not the perfect person to offer advice to you, since I am seen as a malcontent. But, my way of keeping my sanity, is that I keep searching for anything positive. I have found something,recently, that seems to offer some positivity. Google 'md1003'. There is some interesting developments that you may find encouraging. I do. And I am going to hang onto this thread for 'dear life'. Good luck

[zilphia01]

Katieagain.....

You stated that you are taking a med that got rid of your dizzyness.... what is it? That and the fatigue are by far the worst part of this so far

[shel67]

Shel,
I am not the perfect person to offer advice to you, since I am seen as a malcontent. But, my way of keeping my sanity, is that I keep searching for anything positive. I have found something,recently, that seems to offer some positivity. Google 'md1003'. There is some interesting developments that you may find encouraging. I do. And I am going to hang onto this thread for 'dear life'. Good luck

I began lurking on the forums, looking for something positive... Surely people with MS are living normally and there's something that can be done... Well that's when I began to fall apart. I read a advice book on google, woman living with MS for 30 years, that was a mistake. It gave me no hope.

My something positive is reading the tysabri threads. I hoping it will really hold this off for a while until something better comes along. If I can stay like this and get rid of the head thing. I might be okay

[KatieAgain]

You stated that you are taking a med that got rid of your dizzyness.... what is it? That and the fatigue are by far the worst part of this so far

Low Dose Valium.

I take 2-5 mgs when the dizzies start...controls it great. If I am in a flare then steroids are needed for the dizziness.

Valium will not work on Peripheral Dizziness. It will only work on dizziness caused by lesions...Central Dizziness. A fairly quick test at the ENT can determine which type of dizziness you have.

[shel67]

I can figure out if I'm dizzy, virtgo, or it's imbalance. The arms feel heavy which makes my gait all crazy. But I hide it well. I feel really un easy getting down the stairs. I can get up them, just can't get down with out holding on to the wall. I use to go upstairs and through the dirty clothes over the rail, I can't now. I feel like I'm going to fall over the rails.

I'd like to know if there's medicine to stop making you feel drunk (with out the fun) all the time.

[DougW]

I'm sorry to hear that you are having a hard time right now Shel. I feel my MS working within me on a continual basis. I don't know what the word "remit" feels like, but I certainly try real hard to make the best of it. Some days are definitely worse than others though.

I know what I am about to say is going to make some people roll their eyes, but when I have a day(s) where symptoms are worse, if not at work, I play video games, especially ones that have a good backstory to them. It seems that when my attention is drawn into them and I am actively having to respond (take action) to things happening within the game, I seem to forget about the discomforts that I was experiencing and many times the symptoms wane quite a bit. Maybe it is mind over matter... or I'm just a 51 year old kid that has found a good excuse to play games... probably a little of both. ;-)

I'm glad you found this website and the kind people here, just as I did. I know it is hard to do at times, but do your best to not focus on symptoms if at all possible. Here's to a better tomorrow for you!

[shel67]

Thank you Doug. I've discovered reading in which I have to focus and concentrate, helps.