Sorry I've Been Absent

[slightlybroken]

Sorry I've been gone for awhile. A lot has been happening..good and bad.

First the good. My neuro put me on Neurontin and it has really helped with my pain. I'm not to the dosage that she wants me on because it made me feel a little loopy, so we are slowly getting there. I have found with certain medications that I have to up the dosage at my own rate and not at their rate, otherwise I have side effects. We tried Cymbalta for awhile but it did not agree with me. I was sick to my stomach everyday I was on it. I felt like I was going to lose my cookies all day long and frankly, that was no fun.

I started to get my old spunk back lately ( I thought that was long gone). I've been going out and having fun with my friends and family. I still feel like poo most of the time but I guess you could say I've excepted this part of me instead of fighting it. I do what I can on my good days and let the rest go on my bad. I figured it will still be there when I'm feeling up to it.

My local neuro agrees that all my symptoms fit with MS. She agrees with the opthamologist about the wondering left eye. She said that it has to be connected to the cranial nerves/eye muscle weakness getting worse and there is only a few disease that can do this. I had horrible weakness in my left side when I saw her but I'm use to it. She did an EMG to see if anything had change in that department. She said it would be the last time she would order this. If I pass this, then she would close that test off permanently. I passed with flying colors and she said that it must be coming from the central nervous system not the peripheral.

I still have to go back to Cleveland Clinic. I haven't made the appointment. I don't really know why I'm dragging my feet on this one, but I am. I guess I'm scared of no answers...just like always, but I do need to go soon. I'm sick of doctors and appointments combined with no answers.

Bad news...I've developed a new symptom. Along with the wondering eye, now a new symptoms has surfaced just recently. My eyes are jumping when I look to the far left or right...more so when I look to the right. When my husband saw it, I had him describe it to me. I knew what it was from being on the forum for years. It sounds like I have nystagmus. The double vision gets worse with it and I do get dizzy when it occurs so I try not to look that direction. LOL...Any information on this would be appreciated.

I've also been dealing with my fathers ailing health. He recently had to have surgery to clean out his carotids. He is diabetic and has been in and out of the hospital all year. He also has had several strokes in the past. I have watched his health decline all year and it seems that everytime I go to see him he is worse. I talked to his wife the other day about buying him some protective under garments because he is losing control of his bowels. She said he wouldn't wear them, but I told her that he needs them because it wasn't good for him to get skin break-down since he is diabetic. I also discussed that I felt it was time to bring in Hospice to help control his pain needs. He was screaming and crying when we got him home from dialysis. It is so disheartening to watch, and all I want to do is help him. I have a friend that works for Hospice and she said that he would be a good candidate. I feel if his pain was under control, than I would feel a lot better. To be in that kind of pain, is no way to live...I just don't know why his wife isn't being an advocate for him. I was so disturbed when I left, I couldn't sleep that night. This was the first time I told her how to take care of my Dad and I'm not sure if I was "out of line" or not, but I couldn't stand by and not say something.

Well..I've been checking in on all of you..even though I don't write..so I guess I'm a lurker. Sorry again. When things cool down I'll join in more.

[Heather3418]

Horray for the good news, very sad for the bad news.  Oh sweetheart, you are dealing with so much.  I am so sorry.

I am sending up special prayers for you and of course your family.  I wish I could wave a magic wand and have everything go smoothly in your life and the life of your precious daddy.

Many Hugs and Much Love,
Heather
Earth Mother

[Guitar_grrrl]

Grins, Hugs, Prayers for Dad.

Guitar_grrrl

[slightlybroken]

OK..OK I'll call. I'd do the same for you too.

I don't know why local neuros won't go all the way. It's one of those riddles, that you just can't figure out. Lack of self confindence...maybe? I don't know? Maybe they feel like they are watching a movie and they don't want to give away the ending, so at the end they can pop up and say.."I knew it all along!"

Thanks for your prayers my Daddy :)

[sllowe]

Hey you,

Poo you say, huh? Well, get your fanny on it and make that appt. then. Ha/ha...listen to me, I'm a foot/feet dragger myself.  I usually wait until I'm past the point of no return, so I'll give the advice to call, but surely you'll need to hollar at me just the same when I need it - deal?

Remind me/us why local neuro won't go all the way with dx.  I should remember and I apologize, but need noggin jogging.

Prayers on their way for your Pop.

Nice to see you back,
Shell

[slightlybroken]

luverofrogs- Thanks for the hugs ....back at you!!!

Hey LuLu..nice to hear from you. Unfortunately, hubby hasn't found work yet. He still has unemployment coming in though. He's had some calls but nothing so far has played out. We've been able to make some extra money with our old business (karaoke and DJ). It's actually been pretty fun. It was something I really missed since I became ill. The equipment is very heavy, so it can be a pain to move (hubby is on his own with that now).

I've heard a little about UC..an opthamologist tried to get me to go there once.  I know that my local neuro said, even though she feels like my symptoms fit with MS perfectly, she doesn't feel comfortable DXing me unless a specialist confirms this. I guess she thinks I'm an atypical case. I understand her position even though I know clinically I'm a slam dunk...I just don't have hard evidence on MRI, which they like to see...which I guess is understandable before they start handing out the drugs.

She said she has a lot of faith in those CC doctors and she thinks they are the experts..I'm not convinced just yet..especially if you don't have the right lesions in the right place per say (non specific). I'm not sure what to do anymore and really my husband right now is the one that is yelling about it more than me now. I guess I've excepted it. Things are going to work half way one day, and not at all the next.

The funny thing is, (and not funny ha ha) I would probably be DX with MS if it wasn't for those MRI machines. I guess you could say technology isn't working in my favor.

Take Care

[Lulu54]

Sorry but I should have also asked about your DH.  Did work come through yet for him?  I sure hope so.

[Lulu54]

Hey neighbor -
I'm wondering if you have heard anything about the ms clinic at UC instead of going to CC?  I was reading about their MS center there and it sounds pretty good to me.  Cleveland is such a haul to get up there and back from here.

Your dad's health sounds like it is declining fast.  I'm sorry you are going through this too.

It is good to hear you are feeling perkier - I hope it keeps up for you.

my best,
L

[luverofrogs]

((((((((((((((((((Big Hugs)))))))))))))))))))))))))))  

I'm glad that you are feeling a bit better with the Neurotin.  I hope that your eyes get better soon.

I'm sorry that your father isn't doing well:o(.