We miss you, Yorkieville!

[Momzilla]

Hi, Sheila~

I know you've been having a rough time, and I've just been giving you space.  But I can't take it anymore!  Where ARE you?

Is Dr. K. helping at all?  Are you in that much pain?  I'm worried about you.  You're not seeing other forums behind our backs, are you?  I know you got your diagnosis, and you really should be with the CIPDs, but we need you here, to know you're OK.

Come back!

Love and hugs,

Zilla*

[Quixotic1]

No, CIPD should be here.  It is the peripheral analog of MS and it's an MS mimic.  I miss you too.  You always sparked such great conversations, and I worry.  I'm praying that you respond well to one of the treatments and can tell us you're feeling better!!!!  Quix

[yorkieville]

Hi, zilla & Quix.

I'm sorry I have not been in here. I'm sorry I've worried you. I'm really having a bad time, back is REALLY bad, sacrum area hurts quite nicely, as well. And the burning...well, let's just say I have a pretty good idea what it feels like in hell. (Can I say 'hell'?) Bowel program is failing....

And to top it all off, I am weaning off Prednizone. I was on 30 mg. for 17 days, then, 20 mg. for 7 days, now I have been on 10 mg. for 3 days, (4 to go) then I have to do 5 mg. for 7 days. I am so shaky!!! My hands fumble all over the keyboard. I cannot sleep more than 3-4 hours, even taking Lunesta. I feel weak, and stumlbe around a lot.

No, I am not seeing other fourms behind your backs. LOL I wouldn't cheat on you. :)

Not sure now that it is actually Cauda Equina Syndrome as a result of CIPD. When I reread Dr. Ks' report, it said it 'could be'. Forgot toask her when I spoke to her last week, how will we know?

I spoke to her last week, and she deemed the trial ofSolumedrol infusions & Prednizone a failure, and ordered some blood tests. Copper, Zinc, Anti-HV, and Monoclonal protein with immunofixation. What are we looking for?

Please tell me you both are feeling better than me.

Hugs,
Sheila

[floridamom2]

I am so sorry you are still suffering!!!!!  I pray for you everyday!  Please do not apologize for not being here, we all come and go based on our lives and our struggles and we all do the very best we can to help others and get through the day!!

I know nothing about Cauda Equina Syndrome or CIPD either for that matter so I cannot comment but maybe our den mother can comment.

Take care and God bless you!!
Kristin

[yorkieville]

Kristin,

    Thank you so much for your kind and encouraging words. I esp. appreciate the prayers.

     God Blees you, as well.
    
     Hugs,
    Sheila

[Momzilla]

Oy!  OY!!

I am so sorry it's so bad.  I had a feeling it was when we hadn't heard a peep in so long.  I remember you saying before that Dr. K. had said the Solumedrol and Prednisone had not been effective, and I wondered if she had tried anything else.  I thought perhaps you may be in the hospital. I wish she'd hurry up!

I almost hate to tell you I AM feeling better than you, but if you want to hear that...OK.  But it sounds like it wouldn't be difficult to be feeling better.  No large feat.  I don't think anyone on the forum is feeling worse.  We've had a few newly diagnosed newbies who are having a tough time with adjusting to their new status, unfortunately, but physically, you take the cake.Supporting people through new diagnosis is one thing, but I wish we could make you FEEL BETTER!  I ache for you.

When do you see Dr. K. again?  Do you have the tests set up?  Ask her what she is looking for.  I know Quix may be able to tell you, but Dr. K. SHOULD tellyou.  

What are you doing for the holiday?  Will you see your family?  se let us know how things are going, and know that if you don't feel like writing, we are still thinking of you.  Praying for you.

Long, warm hug,

Zilla*

[T-lynn]

Sending you prayers and soft hugs,

When I was first on solu-medrol and the prednisone taper down it wasn't to a few weeks later that I noticed a different.Just a thought.

DR.K is good,stay in contact with her,if you need to call her.

Wish I could take your pain away and yes steroids will make ya a wide awake zombie.

Wish I had answers for ya, just prayers and hugs.

T

[yorkieville]

Hi, Zilla.

    Oh, Zilla, thank you so much!

     Oh, don't feel bad to tell me that you are feeling better than me, 'cause actually, it does make me feel good to hear it! I worry about you and everyone here. I don't want anyone to feel this bad.

    I feel bad for the newbies adjusting to their new status. I understand how they feel. I remember, very recently, coming to the realization that this is my life...there is no 'magic bullet', and that I need to adjust my life around it.

   All of you DO make me feel better. Do you know, I haven't had a crying jag since I found all of you?
I was never one for giving in and crying, but there was a period there, over the summer, that I just had a few real meltdowns.

   Dr. K said she will call me as soon as she gets the results of the labs I had done this week. I'm hoping she'll have them before Thanksgiving. I can deal with anything, as long as I know what it is.

   For the holiday, for the 1st time, in 34 years of marriage, I am not cooking. (and let me tell you, it feels very strange.) I have always hosted the family gatherings, but the past two years, I have been unable to do it, so DH & I have been home alone. This Thanksgiving, Rich is taking me to my sisters in Illinois, about an hour and a half away. We are going to spend a night in a hotel, because I can't manage the round trip and a visit in one day. My sister and her DH have 4 children, ranging from 11 through 21, and I am so looking forward to seeing them. I know it is going to be hard, and when my sister first broached the subject, I hesitated, but after thinking about it, I realized, life is short, and I don't know what next year will bring.

   Rich said he is hosting the family gathering for Christmas, and I am allowed to supervise from my recliner.

   What are your Thanksgiving plans?

   Thank you for the prayers. You are in mine, as well.

   Gentle hugs,
   Sheila

[yorkieville]

Hi, T.

   Thank you for the prayers and soft hugs. Sending some right back to you. :)

    Oh, my, the Prednizone made me so mean!!!! I was awful!!! I'm gettin' nothin' for Christmas! LOL
Seriously, when I was on 30 mg. for 17 days...I would have left me, if I could have, so I don't know how Rich managed to put up with me. I wasn't much better on 20 mg. for 7 days. Little better the past 3 days on 10...but the headache is not nice.

  Something I observed on Prednizone, that I'm not sure how to put into words...I felt more in touch with my feelings, if that makes any sense. I realized there were things that bothered me, deep down inside, and I was able to express it. I felt more 'clear-headed'.  Did you notice anything like that?

   I agree with you wholeheartedly, Dr. K is good. I like the way she talks to me, like I've been her patient for awhile. She makes me feel like she really cares. I realized after talking with her last week, that I believe she is going to figure this out.

  Thanks for wishing you could take my pain away...I wish I could take yours and everyones away.

   'Just' prayers & hugs? :) Oh, I'll take prayers & hugs over answers any day of the week, because often times, answers are wrong.  I know, cause I was mis-dx'd for soooo long.

  Hugs,
  Sheila

[yorkieville]

Hi, Quix.

   Oh, my, I don't know how I missed your post. Please attribute it to lack of sleep and pain, and weaning down on Prednizone. :(

   Please don't worry. I'm just having a few weeks of really high pain levels. I know I've been over-doing it, and am paying for it.

   I am not sure if I have CIPD...after re-reading Dr. Ks report. I realized her words were 'could be' Cauda Equina syndrome as a result of a demyelinating disease such as CIPD. No matter what I have, I want to stay here in this group. I love all of you so much, I feel 'safe' here,

   When I spoke to her last week, and she deemed the trial of Solu-medrol infusions and oral Pred, a failure, I didn't think to aks her if we were still looking at Cauda Equina & CIPD. She ordered the Copper, Zinc, Anti-Hv, and Monoclonal Protein with Immunofixation. My mind was so muddled due to pain that I didn't even ask her what she was looking for with these tests. I have a notebook ready for my next conversation with her, when she calls with the results.

  I'm anxious for results and to find out the next step in my treatment.

  I miss you, too.

  Thank you for the prayers. Hope you know, that I keep you in mine, as well.

   Hugs,
   Sheila

  

[Momzilla]

WOW!

No cooking?  What a sweet family!  Do they comprehend what's going on?  Or are you just lucking out?  Or is Rich just insisting on letting you 'sit this one out?'  Any way...good for you.  THis year, my mom has it worse than I.  She has just been fitted for a brace for her foot for DROP FOOT. of all things, just like me!  But for other reasons.  She has osteoarthritis.  All the disks in her lumbar spine are herniated.  She and I both have bad osteoarthritis, for some reason.  We've both had the cervica; fusion surgery, and now she's having the lumbar surgery, when she's able.  She just had a heart stent, so she has to wait to be off Plavix, a blood thinner.  My ortho surgeon says I will need lumbar surgery at some point,too, but who knows when?  

So, I am happy to have "Steaksgiving"  for my mom!  One year, she forgot to turn on the oven, and the turkey didn't get done, so we had steak instead!  She and my dad got up early to stuff the bird and put it in the oven, but never turned the oven ON!  It's been a tradition ever since, the day after Thanksgiving.  My brothers and I all go to our "out-laws" for Thanksgiving" and then get togther for "Steaksgiving" with each other.  Who needs more turkey, anyway?  (I think I'll make a turkey and steak this year, for anyone who wants it.)   Our neighbors think it's crazy, we're BBQ-ing on Thanksgiving Friday!  We have so much fun with each other, who cares WHAT we eat?  My brother got out of a veery miserable marriage last year.  We're happy for him and the 4 children.  SO much to be thankful for.  We pray that she is happy.  We do.  We love her.  But Everyone is happier apart.  And the two teenaged children just worte a letter to the judge to ask that all four kids be allowed to stay with my brother.  Without his knowing.  So hard.  Poor kids.  THe ex-wife's boyfriend demands that they say "Hello" to him when they come home from school, or they are punished.  Awful.  So we've got that fun!  The kids haven't told their mother!

That's TMI -- Too Much Information, I know.  But we'll sort through it all over Steaksgiving.  That's the kind of family we are.  A TMI family.  Poor kids.  Anyway, you had aquestion in there, what was it?  Oh, yes!  That's what I'm doing for Steaksgiving!

Here's a big prayer and gentle hug for you.  Keep it with you.  I know you'll be needing it.  I'm thinking of you often.  Hang tight, Sweetie!

Zilla*

[yorkieville]

Hi, Zilla.

   Yes, imagine that, no cooking! All I have to do is show up and curl up on my sisters couch. Yes, they know what is going on with me, I believe it is why she decided to host it this year. She's never hosted one, so she is very excited. However, I fear when my sister actually sees me, it is going to be a bit of a shock. I was bad when she saw me in the hospital last Oct. I was too thin, down to 86#s, but now, to add to that, my gait is slow and I am stumbling.

  The last two years, Rich insisted on 'my sitting it out', and he was rather aggravated that when I didn't do it, nobody did. I'm not kidding, nobody got together for Christmas because I didn't host it.

   Oh my goodness, your Mom does have it worse! I am so sorry. How is she holding up, emotionally? You've both been through so much, and still there is so much ahead. Osteoarthritis is so painful. I wonder, did you both have the same risk factors? Rich has it in his knees. He began taking glucosamine chondroitin years ago, and it helped him immensely. I can no longer hear his knees 'squishing' when he climbs stairs.

  I think 'Thanksgiving Friday' sounds like a wonderful traditon! I agree with you, when you're with family, and having a good time, what difference does it make what you eat?! Anything tastes delicious when you eat it with family & friends you love!

   I'm happy for your brother, too.  Sometimes, two people just don't belong together, no bad guys, nobodys fault, just better off, apart. I hope the judge honors the teenagers request. They have a right to choose where they want to live. I think, the ex-wife needs to keep her boyfriend away from her children, or she will alienate them from her. The kids need to tell her. She needs to know what kind of guy he really is. They need to tell her to protect her from maybe making a mistake.

  No, Zilla, that's not TMI. In our way, we are a family here, we share the hardest part of our lives with each other, the part that the rest of the world doesn't understand, and I'd like to think in the safety of our family we can share all the things that are happening in our lives.

  I will indeed keep your prayer and gentle hug with me. And you do the same, as I am always thinking of you.

  Hugs,
  Sheila

[T-lynn]

I told ya that the steroids can make one meaner than a junk yard dog and they can bring out hidden feelings.Once your off of them,it will get easier.

Dr.K will find the answers,she's a gem of a DR.

I'm not cooking this thanksgiving either ,going to my sisters with a vegie tray.I hosted it last year and it was to hard.

T

[yorkieville]

Well, you were right, 'cause I WAS meaner than a junk yard dog!!! Feel pretty shaky today...day 4 on 10 mg...dread Thanksgiving morning, going down to 5 mg. Withdrawal headache is pretty bad.

It's good to know that you are confident in Dr. K, it boosts mine, as well.

I'm glad you're not trying to cook Thanksgiving dinner either.  It really is too hard. Today, the pain has been so bad in my back, that I am wondering how I am going to manage to go to my sisters...but I have to go, I couldn't bear to let her down, she's so excited that I'm coming.

Sheila

[T-lynn]

For the headache try excedrin it has caffine in it and it works wonders.

You need to get on the phone and get something for the pain,you don't need to live like that.I'm not one to push pain meds and that but when ya need them ya need them.

Just seen my neuro and he stated that I have a secondary disease process going on and he doesn't know what.I wake up during the night and I can't straighten my legs,pain is well over 10.Now I have it in my right hand.

I just had all new MRI's and having a lumbar mri on monday.My legs are progressively getting worse ,so I'm having some test done next thursday to see if its from the nerves,if not then they'll look at the muscles.Which emg/ncs is all good but the radiculopathy,but that doesn't cause the chronic spasms and weakness.Pain YES !!!!!!!!!!!!!!

You need to be with family,laughter and good food is always good for the soul.

Gets some meds for that pain,they do help.

T

[yorkieville]

T, last night, my sister said I should not be experiencing a withdrawal headache from the Pred. Now, mind you, she has never done solumedrol infusions, etc. Never been on more than 10 mg of Pred, so I don't know if she's right.

Thanks for the suggestion of Excedrin, but I cannot tolerate the caffiene. :(

I'm seeing my D.O. on Monday morning and am going to discuss moving to a different pain med than the generic Darvocet. Can't take enough to ease the pain, due to nausea.

Oh, boy, a secondary disease processs...just what you need....NOT. I am really worried about you. When will you get the results of the MRI's?

What, if anything, is your Neuro prescribing for the spasms?

On Thanksgiving, you let everyone wait on you, hand & foot, and tell them that's a direct order from me!!!! :)

Sheila

[T-lynn]

I have the results of the new set of MRI's brain c-spine and thoracic.Lesions in the thoracic and a small herniated disk at the T6-7 area thats been there.

I'm having a lumbar MRI on Monday and evoked potentials on thursday.

I'm taking oxycoden 3 x a day,valium 2 x a day and baclofen 3 x a day and ativan at night.Just started the oxycoden today,it helped with some of the pain.

I also take provigil to stay awake.I told my neuro today that these meds are addicting,so now he wants me to be a wide awake junky.He told me that there was no other way of controling the spasms and pain.

Thanksgiving I'm goimg to my sisters.Yea!!!

I hope your DO gives you something to help with the pain.

T

[yorkieville]

T. I'm anxious for you to get the results of the lumbar MRI &  EVPs and see what your Neuro thinks when he has all the results.

Oh, I don't know If I'd want to be a wide awake junkie. Of cousre, you're talking to someone that is terribly sleep deprived.

Our plans have changed a tiny bit for Thanksgiving. We're still going to my sisters, but decided not to spend the night in a hotel, going to head home in the evening. It would be too much packing, and that means me being on my feet, and ending up in agongy when we head out.

My D.O. will prescribe something for the pain, he's really good about giving me what I want. He knows I hate pills and only take thme as a last resort.

Sheila

[T-lynn]

I can understand the returning home on Thanksgiving.
My neuro called me last night to see how I was doing and he called again today.I quess he thought I was gonna go off the deep end.He has reveiwed a MRI from 2 years ago and definatly arachnoiditis is present.But will go ahead with Mondays MRI to be sure.
Theres no cure for Arachnoiditis its treated with the same MS meds and during a flair up its treated with solu-medrol.
I don't like the pain meds,I'm wonky and really off,but my pain is being controlled and tolerable now,my neuro said I'll adjust to them.It takes time for my system to get use to them.
I was awake until 3 am.So hopefully tonight I'll sleep good.

T

[yorkieville]

T. I really like your Neuro, checking on you. Glad he's checking to be sure. I don't like pain meds either, but I like pain, even less. :( Huh, you're awake til 3 a.m., and I wake up at 3 a.m. and cannot go back to sleep, since I started the Pred. Just 7 more days and I'm off of it.

I hope you get a good nights sleep tonight. Don't over-do it tomorrow.

I think Rich is going to have to scrape me off the floor and dump me in the car in order to make the trip. Ha.

Happy Thanksgiving
Sheila

[grannyhotwheels]

I'm so sorry that your in such dire straights.  I wish I could help you.  I just recently tapered off of steroids and I know it hasn't been fun for me at all.  We all have been so worried about you and deep down we knew that something was wrong or you would have posted.

We will all be praying for you and keeping you in our hearts.  Please let me know If there is anything I can do to help you.  Try to have as nice as a Thanksgiving as you can.

I'll be praying,
Carol

[T-lynn]

I hope Rich doesn't have to scrape ya off the floor.

The pain meds are helping,but I'm half loopy.I guess I'll take loopy any day over the pain.

I had a neuro-opthamologist appointment,it went well.He stated that both optical nerves were pale on the out edges,either past optical neuritis or the starting.And the starting of steroid induced cateracts,but they are minimal at this time.The darn things have helped in the past,but gonna try to refuse them in the future if possible.

I wish I could do more for ya.Once your off the steroids,hopefully your sleep pattern will return to normal.I know when I was on them I had increased pain and spasms and I think that was induced to the lack of sleep.

You have a good Thankdgiving trip and enjoy being with your sister.Good food ,family and laughter does the body good.

T

[crystaly]

so sorry not been about to support you as well whilst youve been having such at terrible time .  Ive not been able to come on for the reasons Ive explained in my post . Lots and lots of gentle huggs !!! from me anyways . Thes lot are brilliant anyway !!!! xxx chris oops uk one

[yorkieville]

Hi, Carol.

   Thanks for being you, always so kind!  This morning, I reduce down to 5 mg on the pred. Seems with each reduction, my hands shake more. The past 3 weeks my pain level has sky-rocketed, and I'm not sure why. I've gotten more clumsy than usual, cut my finger open on the blade to my new food processor. Then, slammed my foot into the bathroom door frame in the middle of the night, midddle toe is a lovely shade of dark purple.

   I have not been sleeping past 3 a.m. This morning, I awoke thinking "It''s Thansgiving", and I thought, "One thing I am thankful for this year, is this group."  I've been much better emotionally since coming here.

   Thank you for your prayers, each and every one of you is in mine.

   Have a Happy Thanksgiving!

   Hugs,
   Sheila

[Momzilla]

Hi, girls~  I hope you all have a nice day with your families.  I've just been super busy.  Sorry I haven't written!

I'm so glad this group helps you, Sheila.  I know exactly what you mean.  My husband's great, and my mom is.  But we were shopping the other night, and I could barely walk out of the store, and she said, What's wrong with your legs?  I couldn't believe she hasn't been listening or understanding.  Everyone here knows.  It's a great stronghold.  My husband wonders who I'm 'talking to' and I say 'my friends.'

Happy Thanksgiving!  Keeping you all in my prayers, too, today.

Zilla*