Duttin are you ok? - Multiple Sclerosis Message Board

MSNik · 11-19-2007, 04:36 AM

duttin,
wanted to check in to make sure all is well. Heard you are having some pretty lousy weather where you are, and havent seen you on the board at all this week. You were also supposed to be following up with Neuro 3. PLease let me know you are okay; and know Im missing you!
Nikki

duttin · 11-19-2007, 01:03 PM

Nikki,

I'm doing , its been a rough week or so.Dealing with lots of emotions right now.

The MS has progressed thats been hard to absorb.My upclose vision has become very poor.And now I'm dealing with a secondary disease of unknow orgin.Thats what my neuro told me today.

He said he doesn't know what it is but the chronic spasms and progressive leg weakness is not all from the MS.He said theres definatly a disease process occurring and all we can do is treat the symptoms and pain.All blood work is great,muscle enzymes and all that are great,emg/ncs is good except for radiculopathy and I have had that for 6 years and that does not cause leg weakness to this extent.

Having a lumbar mri on monday to see if implants have shifted.And on thursday another vep,baer and ssep.

He wants me to see a spine DR to see if I am having a reaction to the steel rod in my back and if the nerves surrounding it are having a toxcity reaction and therefore causing the legs to not move.

Right now they have me on round the clock high powered pain meds so I can walk.

Its just another bump in the road,but it gets discouraging.

T

MSNik · 11-19-2007, 01:34 PM

Hey sweetie. Ill bet you're are discouraged, and this is NOT the time of the year to have to deal with this, on top of busy holidays....

Im sorry T. I really am. Wish I could come there and help you; at the very least give you a big hug and drive you from doctor to doctor. I DO KNOW how hard this gets. But, I also know you are one of the strongest people Ive ever heard of- and YOU CAN GET THRU THIS!

The progression of the MS; you know we talk about this all the time on this board. How sure can any doctor be of what progression is, or where it is headed? Yes, this is a progressive disease....but road bumps such as yours- can also cause relapses which are almost impossible to define. You know this, I know this....have alittle faith right now, ok? Because you also know there is something else causing this underlying pain and loss of movement, maybe it ISNT the MS which is the culprit. Have alittle hope.

Not sure if a toxicity reaction to the spine would be a good thing (knowing what it is) or a bad thing (what will they do? remove it?) but I do think that limbo land stinks, and knowing is always better...so please make that appointment and let me know what happens...

Sounds like you have a ton of appointments next week and they should be telling. It also sounds like your Neuro is keeping on top of much of this..

PLease, try to enjoy Thanksgiving. Is your daughter coming home for the holiday? And, if she isnt, when is she coming home? YOU NEED a good dose of daughterly love right now, I can tell! Whatever is happening, please know your good buddy Nikki is with you in spirit, at all times, and I will send prayers, hugs and positive vibes your way. ALWAYS.

Keep me posted - I really want to know youre okay getting thru all this...

PS. PT is helping, alittle...no relief of the hand, but the neck pain is starting to disspate!

duttin · 11-19-2007, 04:31 PM

Nikki,

Just really bumbed out right now.

Thanks for your thoughts hugs,prayers and positive vibes they done me good.

I'm not worried about the MS progression so much as to the back issues.A surgery of that nature --- the removal of the hardware and implants is very dangerous and a very long recovery.It has to be done from the front and the back.

I had this discussion with a surgeon in 2004.

If it has to be done it has to be done,but I'm scared of what type of prolonged disability will come from it.In the long run if I get the use of my legs back that'll be great.

Whats gonna be is gonna be.Its in the Lord's hands now.

All my appointments have been scheduled,ya don't get out of my neuro's office without them.

My daughter will be home for Christmas,she flies in Dec.21st and leaves Jan.2nd.So I'm excited to see her.Her Navy boyfriend will be flying here Dec.28th,that was a sticker shock.Can't wait to see her and meet her sailor man.

We talked for an hour the other night and I caught her up on everything except the latest and that can wait until after the holidays.

I'm gonna keep positive,I gotta for my kids.

I told the neuro I had some mood swings happening and I get in depression modes,he says your not nutts just complicated.He never addressed that issue.

The pain meds helped some but ya know they made my left eye do some funky things.I had no control over it,it just kept going around in circles.Hubby thought I should go to the ER,it just freaked him out.

I'm glad PT has helped your neck,maybe the neck has to straighten out before the hand does.

I'm gonna take some time and reflect what has been going on and absorb everything,enjoy Thanksgiving and go from there.

hugs back to ya

T

MSNik · 11-19-2007, 05:57 PM

Please know that Im here if you need to vent...and my thoughts, prayers and positive vibes will be with you continuously! Im glad to hear your daughter is coming home for a week, sailor boy or not, you need her around for support too.
Big hugs, and keep me posted.
Nikki