Never seem to feel better

[candycane]

sorry if this has been asked before (new here)
dx'd 3/18/11 positive spinal tap & cervical lesion.

My symptoms started out with leg tingling, then "buzzing" in morning, then muscle twitching, occasional nausea, & most recently slight arm vibration/shaking (all over the course of a year, right arm as of today.)

My question is this: I don't know many MS patients & the ones I've talked to were able to state exactly when they had a relapse, how many times they relapsed & how long each lasted.

I can't say I've been without an MS symptom all year!

How do you know when/if treatment is working or if MS is "remitting?"

[DianeD]

I've had ms dx'd for 16 years. I can not tell if I'm having a relapse and don't feel like I have. I'm supposed to be rrms, but doesn't feel like it.

I'm totally fatigued. Sleeping all day would be my choice. I just got a new prescription from the neuro (Pristiq) which is for depression and is essentially given to help with fatique.

I don't feel like I have clinical depression so the medication is puzzling to me. I'm taking it and going to see the doc in 3 weeks. I don't know what to expect actually.

Like many with MS, I'm just hanging on for the ride.

Diane

[nthnjacob]

Sorry to hear of your diagnosis, but I guess it at least answers questions about the way you were feeling the past year. I too have had ongoing symptoms that have not gone away over the last 6 months, although some have improved. I still have slight,weakness in my hands, back pain, and a little bit of ankle weakness, but I have also seen improvement in my eyesight after 5 months of ON. My original weakness in my legs has mostly improved. This is such a strange disease, it is really hard to tell what is going on. Hang in there and let us know how you are doing!

[salamandertom]

I was diagnosed at the end of January after brain lesions and a spinal lesion. I also had ON with a positive spinal tap. I too have had ZERO remittance since my ON started on Thanksgiving. I am sorry you are dealing with the same thing. I would actually say that things have only gotten worse for me. I have decided that I just need to accept what is happening to me and accept that I am not going to be that persons "sister's cousin" that has MS and does fine. HUGS

[babygirl_vic]

I too, have ongoing everyday symptoms and my flare-ups are always different!! Last July I woke up and couldn't walk at all!! I was in the ER the day before because I knew something wasn't right and I just got looked at if I were seeking drugs!!(Which pisses me off to no end) I was dxd with TM and I was in the hospital for a week on those wonderfull mega dose of steriods!!

Then I came home and was on a walker for about 3 weeks. I know only have to use a quad-cane on my "bad days". I have had limbs go numb and not work, my bones in my feet feel as if they are going to break, and one side of my face go numb, and sometimes just major pain during a "flare-up".

I've been told that no 2 MS patients have the exact same symptoms and there isn't an MS norm!!

Hang in there and if there is one thing I've learned it's to take life a day, minute, even second at a time!!

[Lendi]

I was diagnosed in Oct 2004 and can truthfully say that I have never had a relapse that was enough to make me know I absolutely had one. SX have either been ongoing (like fatigue, cognitive difficulty's and heat sensitivity) or didn't last 24 hrs. (like numbness and tingling) There are just lots of little signs which makes it hard for me to even believe that I have MS.

[Lois Shea]

I have found that an MS exacerbation may last for weeks or months then go into remission. Remission doesn't usually mean you go back completely the way you were before but it is a definite improvement. In months or years it will reappear. Mine has always been in weeks or months not years. We are all different.

Lois

[MrsBones]

I can't say I've been without an MS symptom all year!

How do you know when/if treatment is working or if MS is "remitting?"

Well, the hard thing to remember ( because we just don't want it to be true ) is that the remitting part of relapsing remitting doesn't mean absence of symptoms. It means a period with out inflammatory disease activity. We can have no symptoms, all the symptoms we ever had or anything in between. As the MS Mantra goes, it's different for everybody.

That's why it's so much easier to tell when you're in a relapse. You have those new or worsening symptoms that are like an alarm. Think of the relapse as a thief...the alarm usually goes off when it comes in, it does its damage , but we really can't be sure that it's snuck out.

Relapses can be subtle, too, sometimes a symptom that isn't considered serious, so we ignore them. However, even something as minor as a tingly pinky that wasn't tingly yesterday could be a relapse and since we know that pinky wasn't tingly yesterday, we know that it could be an issue. Also knowing that even when the relapse is resolved that pinky tingle can remain, it's very , very hard if not impossible to tell when a relapse is actually over going by symptoms. It's always easier to tell when it's started or continuing.

[candycane]

Thank you all so much for the replies!

Well, the hard thing to remember ( because we just don't want it to be true ) is that the remitting part of relapsing remitting doesn't mean absence of symptoms. It means a period with out inflammatory disease activity. We can have no symptoms, all the symptoms we ever had or anything in between

Remission doesn't usually mean you go back completely the way you were before but it is a definite improvement.

I have a hard time wrapping my head around this idea; maybe over time it will become easier.

Again, thanks to all