I HATE this disease!!!

[Rena705]

Sometimes I wish that there was a guy out there named Sclerosis so I could walk up to him and kick him in the kahuna's!!
Bet I am not the only one!!
I saw my sexy italian neuro yesterday and he was awesome as usual...easy to talk to, listen's to what I have to say, understands when hubby and I make a joke and he thinks I have a good attitude about what I am dealing with.  HA...he doesn't see what I write here does he?  he he

Anyway, he gave me a new med but I don't know the name of it cause I had to drop of the script yesterday and they had to order it in as they have never carried it before!  Hubby will pick it up this evening so I will enlighten you about it then.  He said that Baclofen works for some but this new drug has less side effects and he seems to think it will work better for my bladder spasms.  He said the muscle spasms in my legs are related to my MS.  I asked him about my losing my voice on what seems to be a weekly basis and he said that it just might be due to a lesion in that part of my brain.  He said that my inability to talk without slurring my words in the past and the stuttering are more than likely all related.  

He noticed right away the my left eye wasn't as droopy as it usually is and he was right.  However, when I got home yesterday I started to have that ice pick pain in my head and it was a doozy!  I finally took an Oxy and it let up a little...or wait, maybe that was me floating through the air, not the ice pick pain...who knows, it worked and that is all I care about!

So, I am gonna try this new med and I am to let him know in a month or so how I am making out and he wants to see me in about 6 months.  It is sure strange that most of my trouble happens in the late fall, early winter.  I figure I should be in fine shape by June!  he he

So that is it in a nutshell...I thought he would have done an neuro exam but he didn't.  I also thought he would do another MRI as he said he would if I presented with any new symptoms.  I figure he is going to wait until June to see if the bladder and leg thing is sticking around or not.  He said that if I have any problems that I should give him a call and in the meantime I should still see the urologist in April 2011.  I can't wait to try the new med cause I am sure in a lot of pain from these bladder spasms.  Guess I will hope for the best and just wait it out...what else can I do?

Lots of hugs,
Rena

[Rena705]

jen...you are right...it's the trigeminal neuralgia pain in my head that feels like someone is driving an ice pick into my head...sharp, short and excrutiaing!  I forget that we get newbies here all the time so sorry for any confusion sidesteps!

ha ha ha...ok on the "BIG" kahunas!  ha ha ha

[Sidesteps]

Ohhh! I get it!  I'm getting sharp needle like pains (they hurt pretty badly but they are gone so quickly you wonder what hit you) and the random cold sensations.  It's the oddest thing! Right now, my right hand is ICE cold and the rest of my body is fine. Usually it's my right side - right foot and/or my right hand and sometimes my left shoulder.

[jensequitur]

Hey, I think Rena's talking about headache pain that resembles an icepick being driven into her head.  Are you talking about phantom cold sensations?  I get those frequently - sometimes in my face, sometimes in the side of my right thigh.

Rena - I kept thinking BIG kahunas!

[Sidesteps]

Can you tell me about your bladder spasms and ice pick pain?

I've had more than 12 bladder infections in two years --- I also think I am now getting nightime incontinence. (I say "I think" because it's such an odd symptom I'm doubting myself.) I noticed it around the time of the beginning of worsening of my symptoms 6 weeks ago.) I had it again last night and feel worse today.

Also, your "ice pick" pains.  I seem to have been getting *nailed* with all sort of random symptoms.  I had the "ice pick" pain around that same time. They happen all over --- my abdomen, leg, arm and I had them in a couple "odd" places today again (like the side of finger.)  I'm getting them again today again.

My left shoulder is REALLY bothering me (burning and pain) today and my right hand is freezing. (I'm getting the ice cold extremities a lot.)

I'm in limbo but I'm having so many symptoms I think I'm losing my mind. I'm fearful I'm turning into a hypochondriac. Now, that I think about it that might be fun! lol :)

[Rena705]

Well Wiggles...I am so sorry to hear that both you and your sis are MS warriors...but you have a good attitude and that is half the battle isn't it?  I would give you my doc's name but it's a long trip from New York to little ol' Edmonton!  I appreciate you offering to find that Sclerosis guide and if I find him first I will kick him three times!  One for each of us!  ha ha

OK Doug...relax, I think you are safe!  ha ha  I appreciate your light hearted banter and would like to see more of that out of all of us!  I know it's hard when that creep Sclerosis is lurking in the background but one day he will be ours and boy will he pay!!  ha ha

Ren...I will let you know about this med...perhaps it's something old hat around here and it's just new to my pharmacist...ya never know!  I will let you in on whatever goes on with it and what it is as soon as I know ok?  Thanks for the response and it's nice to know that we can cause him spasms and such things once we find him...Sclerosis better look out cause there are people on the war path here!  ha ha

Kahuna's or Cojone's...as long as the point get's across I am sure Sclerosis is gonna get the hint right?  ha ha

Lots of Hugs,
Rena

[jensequitur]

Interesting...  I've never heard 'kahunas' used as a metaphor for 'cojones!'

[Doug1964]

I should not have been so self-centered in my last post and I apologize.  It's just seeing the words "kick" and "kahunas" in the same sentence sends me into protection-mode.  Then I looked at your picture and saw what you did to that huge fish.  I thought, "Yikes... this lady means business!"

I sincerely hope that the new meds that the Italian Stallion prescribed for you turn out to be more than you ever could have hoped for.  No one, except this Sclerosis dude, should feel any of the discomforts that you or any of the rest of us are dealing with.

Keep us informed (and it better be a good report!).  ;-)

-- Doug

[rendean]

Rena,

I love your post. I am so sorry that you have to face issue after issue with Sclerosis. Once we locate him, you get your chance for the kahuna kick.  

Then I would like a few ice pick pokes to the head, some vertigo, and few hundred spasms at anyone's choice of location.

Keep us informed. I am curious as to the new drug. Even more interested in if it works.

I know your pain as it is similar to my lovely MS profile. Hang in there and if need be make an appt. with your good looking neuro just for a lift in your spirits, LOL

Big Hugs,
Ren

[Doug1964]

Rena,

Just so that there are no misunderstandings... none of my names (first, middle, last... nor any of the aliases that I use in the seedy parts of town) are remotely near Sclerosis.

I say this all in an attempt to keep my kahunas safe.

** This has been an announcement from Doug's Emergency Nervous System.  In the case of a real emergency you will NOT be informed as to where Doug is hiding.  This was only a test.

[wiggles94]

Hope your new meds work.  You have a great attitude and your post made me laugh.

I am being treated for MS and my sis is also - she is CIS - optic neuritis -  I have a serious question for you.

MY sis and I both think our docs should look good - after all if you have to go through all this pain and torture - shouldn't you do it with someone who is soft on the eyes?

Can we have your sexy Italian docs number?  Then I'll go find sclerosis and give them a good kick for you!

Feel well!