[Jan4you]

Hi GALS AND GUYS~!

PLEASE would you raise your font size to 3 or 4 at least? Helps us foggy-blurried-eye folks see better

THANKS!!!


Come on in...don't be shy. Let us know how you are doing today.. or any daze ok?

Don't know where BRAIN is...whether she's busy.. hope you are ok Cathy dear~!

I see my 2nd Neuro tommorow to get my CPAP RX probably and talk to him about his tentative DX of Narcolepsy with cataplexy.

Also, still have eternal buzzing in my legs especially. AND my breathing problem has returned. Otherwise I am living...

I see my supervisor today, this afternoon and I will need to address (or confront) her on what she wrote in my eval and never told me. It marked me down as less competent and is on my perm record. It reflects my merit raise.

WHEW... bREATHE... Breathe...

Wish me luck~! I feel positive and will pull out every spiritual tool I know.

Know that I FEEL for you all, and truly care.

Sit down with me, let's talk a bit. I'll be here for you.

Warmly Jan

What can I get you to eat? Drink? WHOOOWEEE

[braingonebad]

Hi! Thanks for starting, Jan!

Weds is dh's day off, so it's really hard for me to get on here.



I wish we'd heard something from Tom (Freeinhou)... anybody know anything? I'm worried.



As for me, same ol same ol. Ins co emailed me - they got the RX's I mailed - the pain patch and a muscle relaxer I can take during the day. They are being processed. No word if they're in stock or what. Hope so, and that I get them in a few days.

Having a little trouble with vertigo and blurry vision and a lot of trouble with fatigue. But I think those always get worse when I hurt - pain takes a lot of energy.

If it was nicer out I know I'd feel better. But the crocus will be open soon, and the daffs are coming up, and I just saw the first of the tulips coming too. So that helps!



Good luck with the neuro, Jan.



Hugs to everyone.

[sugarboo]

Morning Ladies

[B]Been a bad time for me since Friday. Didn't sleep all night, repeat on Saturday, and up by 3am ever since. My low back pain is just not getting better. The drugs are not relieving it and as I do my PT exercises; I do this one on my belly, and tweek my legs, its an odd one...but I lay there and I cry. Not because it hurts to do it, but because I can't believe I HAVE to do this. The PT says it won't be forever, but I don't believe him. Its not his fault I hurt....what do I say to him?

I go see the spine doc on Monday....guessing he will want to do another injection. Even a week's relief is worth it....it seems...until it wares off and all I have it the bill. How do I live like this the rest of my life. BOO HOO!!

Oh, still having the numbness and tingleing in my feet and legs. Sick of it! Sick of all of it. Oh woes me!!

Good luck to all with their weekly appointments and general searching for answers this week.

[tante]

Last week I saw the rheumie who:
a) referred me to the oncologist (clean cancer bill of health, and
b) had put me on oral prednisone in anticipation of some uglies that it might help, and
c) wasn't going to see me anymore because all rheumatological diseases had been ruled out.
BUT, no-one else had taken over the Prednisone and it didn't fit anything left in the picture so I made an appointment to find out how to taper off.

Well, this Dr. is a bulldog, Dr. House combo, and certainly not putting down my other Dr.s, decided to hang onto me until someone either came up with a specific demyelenating inflammatory disease that could be treated, or decided based on the all of the positive tests and clinical evidence to treat me "presumptively."

In the meantime I have been started on 100 mg per day of Imuran,
an immunesuppressant, because the damage is piling up in me...blood work every 6 weeks. will start the prednisone taper in one week.

Attacks are more frequent, although while on the prednisone not as nightmarish, but I am left each time with worse residuals in terms of lack of function. The hope is that the Imuran will slow down the damage being done to my nerveous system. If it doesn't than a chemo drug will be used.

I am supposedly getting set up for tip to toe MRIs again, but I haven't heard a thing about dates.

Finally, I think it is beginning to truely wear me down although that might be the roids talking. My left eye, and the related trigem. neuropathy sensations around the eye are driving me batty and if I could only get rid of one thing...heal one thing, it would be my L eye...with the severe hearing loss, any reminder of damage to my eyes just scares the plooey out of me.

See, I swore I was going to be short and to the point, but which point....Dr., pain, Sx, Rx, frustration???

I guess I shouldn't whine, at least everyone seems to agree I have a demyelenating disease involving the CNS, so I guess that's the equivelent of beachfront property on limbo island

I'm feeling terribly self centered not replying specifically to each of you this week, I am sorry, I am...

[Friend2U]

I was newly dx with ms this Dec. Gave me a name for all that had been going on for years. Taking Beta.

Tired, tired, tired today! Debating on cutting back at work. I know I need to... so it's just a matter of how much. Going on like I am... is just not going to be an option for much longer.

Hope the font is large enough. Glad you asked. The folks here seem so caring. I'm learning a lot. What a great community!

Take Care,
~a new friend

[sabimax]

hey all,
been a while...I am same...suffer on humid days, and if overheat...learning a lot how to control body temp...

I did have some dizzy spells while out of town for work, that wasnt fun...but not sure they were same dizzy...either way much worse..I would get the dizzies but then vomitting too..uggggg

Otherwise, just kids and work keep me pretty busy...

Hoping Tom is Aok too?? hugsss to all, sarah

[momXseven]

Hi everyone, not a lot going on with me, I updated my chiropractor post, so I guess this takes me out of limbo.

[sugarboo]

Just an update:

Saw my PT yesterday and he did some stretching and pulling on my spine, some ice and alot of TLC....I bawled like a baby and he said he was surprised I was doing as well as I was He felt really bad for me. He is now going to show me some exercises I can do in my hot tub. I have to show up in my bathing suit next week Ha...Haha....ha does that mean I should shave

I went and raided my mom's medicine cabnet and got a few vicodin to make it until tomorrow when mine gets filled (I'll pay her back) and last night for the first time in a week, I SLEPT!! A full 8 1/2 hours. I feel so much better today....and again I have hope. One day at a time....

Here's to the start of a good weekend!!!

[McGimpy]

HI,all sorry i'm late.Just like me being the only guy in limbo it seems.Went to see neuro last week,Have to go back Sept. 10th
But at least he doesn't think it's all in my head
Oh well hope everyone has a great day
Cheers

[sugarboo]

Late is when another week rolls around and a new thread is posted

September 10th? This year? Wow!! Are you having any symptoms? Good luck and glad you checked in!!

It's good to have a man or two around here!