Is ANYONE doing well?

[doublevision1]

Anyone?  ANYONE??  I'm just trying to get up to date on the last few days and it seems like we are all going downhill in one way or another.  If there's anyone out there who has turned the corner for the better, please share!  It would be nice to hear a little good news.........

db

[shoshin]

FWIW, I was told there isn't anything they can do about numbness. If you find out about anything, let me know.

sho

[essdipity]

No, luckily I'm not currently having any numbness. Just the pain, which is so much better with meds.

I haven't had any side effects from Lyrica, once I adjusted to the full-fledged dose I was given all at once (!). Many other people also do just as well. From reading the drug profile I've concluded that it's not all that awful overall, so I wonder why your doc thinks it's so relatively negative. Years ago I was on Neurontin and had fasciculations so bad in one forearm that I had to tuck it under my thigh to keep the entire arm from jumping. So of course, everyone's different.

The thing is, db, I don't see why it's a good thing to take a med which is giving you few or no side effects, when it's also giving you no FRONT effects, over many weeks, if you know what I mean. Maybe it's helping you but it doesn't sound like it. You possibly could switch directly to Lyrica or something else (IS there anything else?) without doing the whole taper down, titrate up routine, considering these drugs are quite similar. You won't know unless you try, and Neurontin is always there waiting if it turns out to be better for you.

ess

[doublevision1]

It's so nice to hear that several people here are doing well.  I asked because it just seemed like many of us 'regulars' here all had something worsening at the same time.  I appreciate what some of you said about posting when you aren't doing well, and living your life when you are doing well.  I generally do the same.  But it's really nice to be uplifted everyone once in a while.  And good news helps to spread a little hope around.


Zilla, I wanted this post to only be about good news, but since you asked.........lol.........I am ok in many respects - fatigue not bad, vision still improving -  but it is my left hand that seems to be slowly deteroriating.  The numbness has now spread to all my fingers; the tightness and burning sensations are still bad; and there now seems to be some weakness and mild incoordination that wasn't there before. Three of my fingertips on my right hand now are ever so slightly numb, and this makes me nervous.  If my right hand gets as bad as my left I'm not sure how I'll get anything done.  I'm thinking I might be having a mild relapse.  If so, that would make it three in ten months.  Not good.

Ess, I'm glad to hear your pain meds are working so well and if things continue to worsen for me, I will again ask my neuro about a change.  I understand where he's coming from re: avoiding meds with side effects if possible; I just think I will soon be at the point where I would rather deal with those side effects than this.  I also realize this nerve pain can be hard to treat and I may just have to adapt; but not before I give whatever's available a try.  I tentatively booked an appt with my GP next week in case things worsen over the weekend.  I will ask her to consult my neuro and let him know what she thinks.  I think it wil help to have a medical professional actually see and assess what's going on objectively.  It's tough to describe this stuff over the phone and not even directly to my neuro but to his nurse.  Who knows what may be getting lost in translation?

One question for you Ess: do you have any numbness associated with your nerve pain and if so, does the Lyrica and/or amitriptyline help at all with this?  Sometimes I think it is actually the numbness that is the worst to deal with.  I'm going out tomorrow to buy a bunch of plastic plates and cups.  I'm getting tired of dropping and breaking dishes!


Tahiri - sorry to hear things took a turn for the worse today.  I really hope it turns around again soon.

db

[Tahiri_Veila]

I just got jinxed.  Last night I posted to say I was doing a lot better and this morning everything hit really hard with new symptoms and everything.  I guess it happens.  I will be honest with you as well.  I am with wonko, when I am feeling good I don't post as often.  Instead I am out doing stuff with my family and taking advantage of the time I have.  I am undiagnosed and don't know what I am dealing with yet.  The time between "relapses" is getting shorter and each one is tons worse than the one before it.  I come here for comfort and advice.  I am young and don't know much about neurological problems, but that is what I have been told I have.  Many here have a great knowledge of different neurological diseases through their testing experiences.  Also people here can empathize because many are going through the same thing.  It may seem dark and gloomy, but on my worst days this is the light that shines brightly to help me through.
Tahiri
(by the way it looks like I might be back to posting a lot)

[essdipity]

Hey, db. I feel pretty good, really. The combo of Lyrica and amiltriptyline is really helping with the pain, and my sleep is somewhat better, if not great.

And yesterday I survived my first shot of Avonex, with side effects that were greatly helped by Aleve. So for the moment at least, I can't complain. That's a new one for sure.

I hope you do better with your arm and hand very soon. If not, then scream at that stubborn neuro.

ess

[Momzilla]

How are YOU?  Not doing well still?  

Hope you feel better!

Hugs,

Zilla*

[jensequitur]

I'm doing okay...  I have a number of new symptoms, but if I've had a flare, then it wasn't bad enough for me to drop out.  I've been tired and woozy the last couple of weeks, and today my balance is really off.  I keep running into the wall, or falling over when I'm trying to walk a straight line.  I managed to drive to work today, but it was a bit hinky!

But overall I feel pretty good - I'm not overly fatigued, and my brain is working all right - I rate those as being most important for me to feel 'good.'

[ccurci]

I dont want to jinx my self but since you asked i will answer.. I went to my neurologist who dx'd me as benign ms (i am happy about that) i did have it bad a few years ago. so i would rather be benign than active.. right now ms is in the back seat for me. I have other health issues if you ever read my journal I still get numbness. it has since dimished since my ivig treatments last year...

[sllowe]

You are not a "buser'" wonkster. . . . .you got it goin' on Wonkster you.....

I understand where you are coming from, I'm picking up what you are putting down, I'm w/ya....gotcha....LOL

have a good one,
Shelly

[wonko]

I come here to let out all of the feelings that I'm trying to hold back from the rest of my life, so I'm sure people here get a very distorted view of who I am.  

I have a great deal for which I am thankful, far too much to list here.  I'm sure just about anyone would like to be in my shoes.  I've got it goin' on.

I know there can be a negative vibe on the forum, not from the people, but from hearing about people's problems and fears.  However, that is why I come here.  I agree that if you are looking for a chance to stop and smell the roses, then another venue may better serve that purpose.

Personally, when my symptoms die down and I feel great, I DON'T come here that much!  Maybe I'm in an abusive relationship with the forum (me being the abuser), but that is how it works for me.  I need this place during my dark times, to vent and read that I am not alone, or to ask questions I'm too scared to ask elsewhere.  When I'm feeling up, I know everyone here is happy for me, and would rather me be active in other parts of my life.

I hope I'm not the only one that feels this way, and I hope people understand where I am coming from!

Take care.

[sllowe]

Hey Db,

I'm doing pretty well these days past few weeks.....

[Heather3418]

i have great news!!!! at age 54 i am NOT pregnant.....

heather

[Tahiri_Veila]

I am doing better as well. Tingling pretty much gone and fatigue not as bad. Things are better, so I am not posting as much as I am taking advantage of the good feeling and doing things and going places.  Saw a wonder musical this last weekend in St. George Utah.  Les Miserables.  It was a blast, very well performed.

[Heartshome]

I am doing great! I feel normal in all respects except for some pain/weakness in ankles. No complaining here--it's a miracle to not have numb hands and feet!

[syndismilez]

Here I am :)  I am doing pretty darn good.
No headaches, no muscle spasms, bladder emptying decently enough,
arm all well, eyes not going bizerk, weekend coming up, did 5 days of
exercise!!!!
Only thing not right is my toes are numb, I can totally live with that!!!!
Hur Raw!!!!!!
I hope this lasts a LONG time :)  
I also hope that all others will see improvements as well.
Cyndi.