To those with MS

[Quixotic1]

I don't usually do this, because I read most of the posts and can usually answer my questions.  But, I need to know if any of you with definite MS feel the way I often do.

I feel carppy.  Therre is no other way to say it.  I feel crummy, almost all of the time.  My head roars, I feel weak, so fatigued that a trip to the store has me in bed.  Along with it I'm irritable and impatient.  I'm running to the BR with bladder cramps and everything down under feels strained and raw and achey (no UTI).  It's  not nausea, or sweating, or anything that I can relate to a specific illness, like I don't feel like the flu, or a cold or alleriges, or GERD.  In fact, eating is one of my few pleasures.  I have felt this way for the last few months.

My brain is working okay.

Other than the urinary, I have little pain, except for what breaks through with the TN - lots of little jaw pains recently and I see the dentist Monday, but no teeth are tender, gums are good.  My gait has slowed and I'm tripping alot and it just makes me mad.  Well, I am having really bad eye pain in both eyes intermittently for the last couple months and I am staying in a humidified room and using moisturizeing drops all the time and it is better today.

So, I hate going to the doctor and saying "I feel crummy" and not having anything to tell him specifically about why.

Do any of you just feel lousy?

Is it just a bad attitude?

Quix

[jensequitur]

Wait a second...  are you saying that you have more teeth coming in?  I've heard of people who just keep growing more teeth...

[essdipity]

I'm so glad that things seem a bit better. This dental issue has been weighing on your mind for a good while now, and probably has added to the depression factor. Just one more #$#$% way your body is betraying you.

But now that's on its way to being resolved. I'm hoping the urogyn will come up with something that works for you too. Lulu has had great results from Sanctura, and with the huge :-(  $250 the feds will give you on the donut hole issue you might be able to afford that.

Let us know how you do on more Effexor. So many here need antidepressants, and the meds are such an individual thing that finding the right med and dosage is tough.

I just wanted to encourage you to keep telling the forum how you're doing, both the good and the bad. You have helped all of us more than you can ever know.

ess

PS  Ice cream, esp a Hot Fudge Sundae?   Mahhhvelous!

[Quixotic1]

You all are so sweet and remind me why the only thing I really want to do with a day is spend it here!  Thank you for your kind words, sharing your feelings, and letting me know that I was not just a loser who got a bad attitude and gave up.

Somehow, I felt like with the MS I should feel pretty normal except for the symptoms.  I really mean that.  Kinda silly.

Clearly part of my overall crumminess is depression, so my PCP and I doubled my Effexor.  I don't think that being off the DMD is part of it except the anger that I was forced off of it, and any other, by the cost.  My neuro doesn't think any of the DMDs are going to help me, as he feels that the bulk of my disease is in direct axonal death.  I have very little evidence of inflammation:  Steroids never had an effect, I have very few T2 lesions, and I only had one O-Band, yet I have a lot of disability (EDSS about 5.5)  He's waiting for an oral med.  We'll discuss this in May.

So, I am much happier this afternoon.  I saw the dentist - nice, kind, friendly guy.  After three years without a cleaning (I know, 'mybad) I very little tartar and only two tiny areas of mild gingivitis.  The "extruding molar" is doing just that.  It's a healthy molar which is "super-erupting."  I guess that's only fitting for someone living near Mt. St. Helens.  Two years ago I freakishly fractured the virgin molar below it, and it had to be extracted.  Then this molar had nothing to contact and began erupting right out of my gum - so now I have to have another healthy tooth extracted.  I guess, it can't be just pushed back in.

Given that I am congenitally missing 14 permanent teeth anyway, and now will have lost 2 more, I only have 16 teeth (of my own) left in my mouth.  Bummer.  Now I get to look forward to the extraction next month.  yippee.  

In a fit of defiant perversity, I stopped by the ice cream shoope on the way back home and had a chocolate chip mint hot fudge sundae.  So there!  Now I am giddily smiling in a sugar high and expecting a crash in 2 or 3 hours.  So, getting rid of the dental dread (plus enough sugar to hype a small soccer team) has improved my mood immensely.

Thanks for the words that kept me afloat.  Next stop my urogyne and begging for meds for the bladder spasms.  Return the census, pay JCPenney, and fill out my MS survey for the Pacific Northwest Registery.

Are all of you signed up for NARCOMS???  Let's be heard.  Every one please do this!

Thank you, thank you, thank you!!!

Quizzle Sticks

[jensequitur]

I'm in remission right now, so it's been a while since I felt that bad.

Even in remission, I had four days of bowel-twisting cramps and diarrhea.  Sorry for the TMI, but it was so weird - it was like I had a flu bug or something.  But I was perfectly healthy, and even had plenty of energy when I wasn't running to the bathroom.  My abdomen felt painful and tender, too.

What to tell the doc?  I would just tell him you feel terrible - fatigued, cranky, and more symptomatic than usual.  This would elicit a "That's MS!" comment from my neuro, but I think yours is a little more hands-on.

[Eyesnlegs]

Well if sadness and euphoria can be MS sx then why can't feeling as you do. I think the fact that so many of us feel as you do shows that MS is so totally complex it doesn't really matter whether the MS is actually causing it in a biological sense or if the MS sx are the source (if you see what I mean) the fact remains that we feel dreadful a lot of the time and that needs to be addressed - and soon.......

OK - lecture over - now go take care of yourself and get some help.

(((hugs)))
Pat x

[Mand125]

I just want to say I am sorry that you are feeling so bad.

I think sometimes we look to you (and the other "flowers") to be there to answer our questions and forget that you are also dealing with this.

I hope that the crappyness soon goes and you feel much better.

Mand