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sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 2/21/2014 8:26 PM (GMT -6)   
If the illness that I have is MS and there has been no RX treatment isn't that dangerous and likely to make it progress? I have read that is why the doctors like to dx it soon so that it can be controlled better. And I have a few good days and then a few bad days,so is that RRMS-- like? Or is it supposed to be long periods of doing well and feeling good?

And are symptoms like the flu with extreme fatigue, muscle aches and icky feeling? And now with Neuro symptoms also?

Thanks!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 2/22/2014 2:07 PM (GMT -6)   
MS is highly variable. It's different for everyone. For me the cycles are longer than what you describe. Also for me, I have never gotten back to a normal baseline of symptoms. After each period of flaring, I have gained new and permanent symptoms to manage.

My symptoms have never included flu like symptoms. That could be a symptom of someone else's MS however. I do have fatigue at times but no fever or aches like with the flu.

Progression can be slow or fast with MS. Meds aren't always affective. The meds are serious with many side effects and they are expensive. Most doctors won't prescribe them unless they are very sure of the MS diagnosis.

Many people with MS choose to not treat with the standard MS meds.

I hope this helps.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 2/23/2014 6:04 AM (GMT -6)   
From what I've read, the medical community cannot even clearly explain how the MS medications work. Most of them just state that the medications are designed to alter your immune system--hopefully for the better. This was the case with my first med (Copaxone). I took it for about 6 months then had a terrible episode--which left me permanently disabled--so my doctor immediately switched me to a new med (Tysabri). I've still had relapses with this med too, but luckily they have been fairly benign and I have fully recovered after each one. Not to say Copaxone is bad--it just didn't seem to work for me. Others may tell you Copaxone is awesome. Again, MS treatment is not an exact science.

Fatigue and spasticity are two of my many symptoms. I guess that can feel a little like the flu. Although I do have bad/better days, I've found a good night's sleep and a proper diet make a big difference in how I feel.

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 2/23/2014 6:12 PM (GMT -6)   
So then when you have a flare up do you have days in bed with all those symptoms and are the sick days frequent? Or are they more spread out in time and with good days in between?

And do your symptoms come along with the achey sick, shoot me please feeling?

Thanks!

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 2/23/2014 7:56 PM (GMT -6)   
All my symptoms are constant. For some reason my flare ups cause me to lose consciousness, but when I come to I usually go back to my regular symptoms within 48 hours. All my permanent symptoms were caused by the 2011 relapse where I received a large lesion on my brainstem. The doctors said that is a very bad place to get a lesion and often causes varying symptoms. I was bedridden for 3 months during that episode and lost about 40 lbs. I threw up nearly every day. Since then my symptoms have stayed about the same even though I had two flare ups that caused me to lose consciousness and go to the hospital.

You cannot compare your symptoms with anyone else's. I think the main factor is where the attacks happen in the brain/spinal cord. I have over 40 lesions but the only attack that ever caused permanent damage was the 2011 one.

If you have vertigo, they have over-the-counter medicines that have helped some people. Not me, but some.

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/24/2014 2:22 AM (GMT -6)   
Hi, sueg, I just happened to see this...

I am not DX with MS, and I don't know what all you are DX with but I will tell you that I have fibromyalgia, which I often describe to people as feeling like I have the flu 24/7. The fatigue, severe aching, malaise, feeling "feverish" even, as if your internal temperature is off.

Everyone is different, maybe others don't describe fibro that way, just the same as perhaps MS may feel like the "flu" to some people, but not to others (I don't know). But I am just letting you know...

Fibro definitely feels like an ongoing episode of the "flu" TO ME... A flu episode that has not gone away for 7 or 8 years! Ha!

Love,
Eden :-)
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