Anyone

[Momzilla]

Well, I was supposed to see my neurologist today to get the test results from the cervical MRI (which I knew were negative from the hospital computer at work-naughty me!).  I got there and the receptionist said that they had left a message at my home saying the doctor wasn't at that office today, he'd have to reschedule.  I was surprised and saw that, in fact his partner was in today instead.  I also knew that I had practiced a dozen times asking him to give me a spinal tap as a last resort before sending me to the psychiatrist for 'anxiety' or faking my paralysis.

When I got to work, I called and made an appointment with a new neurologist, but I can't get in until Aug 2.  I'm SO weak and as I've been preparing notes and writing a timeline as has been mentioned on the forum, I've noticed that the side of my neck is completely numb.  I thought it was related to cervical fusion surgery I had in 2005, but it can't be. after all this time.  It wouldn't be unilateral I don't think.  I'm getting so crampy and weak and tired and I don't want to have to wait until Aug 2.  Now I'm grumpy as well!  Grrr.  Maybe Momzilla is a good name for me!

Also last night for the first time I had a huge dark spot in front of my eyes when we got home from going out to dinner.  I've been having what I guess is visual snow.  Brighter and brighter, and I'm getting dizzy when I stand for a long time.  I don't deny I have migraine aura.  But when we returned home, I had this spot that was in the center of my field of vision.  Purple more than black.  And at times my vision was blurred.  It was fleeting, but the spot stayed until I fell asleep.  No pain.  and it changed to white and I got my usual fireworks of white when I closed my eyes with the lights out.  Strange about the spot:  It was the reverse of my iris shape.  The center of it was clear where my pupil would be.  Around it was a burst sort of like an iris shape.

I'm babbling.  I'm crabby.  I will check in on everyone tomorrow or the next day.  I hope everyone has a wonderful, safe holiday!

Blessings!

Christina*

[Want to feel well!!!]

Good luck!!!!  Just imagine us all behind you.  Let us know how it goes.

Wanna

[Momzilla]

I am at work at the moment and am holding back the flood of tears.  Thanks very much!  Am leaving for the MS clinic in two hours with the timeline Wanna and Quix helped so much with.  I read the forum almost each day and hope everyone is doing well.  Love to you all!

Zilla*

[Want to feel well!!!]

Your virtual family is pulling for you.  Hope you are feeling better soon.

Best wishes and prayers...

Wanna

[oncetri]

I'm sorry to hear you aren't feeling well.  I know it's difficult and we are all scared, but if you ever need to just vent or talk, we are here for you.  I did read many of your posts and they really helped me.  I'm new to the whole mom thing, and dealing with no diagnosis, and I can't express enough how what you wrote helped me to deal.  It helped to know I wasn't alone and wasn't the only one scared.  I hope you can take solice in knowing that we understand where you are coming from and around to help.

Feel better
Corinne

[doni54]

Just read Quix post.  I am very sorry you are feeling down. You have been so good to answer my questions and be supportive of me since I've been here.  Please try not to be scared, I know this is easier said than done, but all of us here support you and are here for you if you need us.

You are in my thoughts and prayers and I send my love and best wishes to you.  Consider yourself thoroughly hugged!!

Take care and try to cheer up!

Doni

[floridamom2]

Please know that I am praying for you and know that the struggle to get a dx and to just fight the disease process can seam overwhelming at times,  but we are all here going through the same thing and are here to help you through this.  I have read so many of your posts where you offer a kind funny word or two or a note of encouragement to anyone who comes on with a concern.  We are here for you now to offer your concerns or just be there to let you vent about how frustrated you might be.  I will be thinking of you and waiting to get a reply of how you are doing soon (even if it';s not good, we want to know!!)
We all Love you!
Kristin

[Quixotic1]

I heard from Chris (Momzilla).  She's down and scared and feeling very low.  I want to send all of our best thought, prayers, ((HUGS)) and love to her as she has been a backbaone on here and has been so supportive of everyone.  Chris, we love ya and are thing of you!!

Quix

[karzme]

My 4th was good. worked it and needed overtime. I am still trying to get on Copaxone. Hopefully soon.

[Momzilla]

Hi, Quix~

I hope all that sleep you're getting is restful.  Is your sister nearby?  Who's helping you?  How's the med change going?  I know that takes a while to have an effect--hang in there.

Thanks for your last post.  I keep reading it.  It makes a lot of sense.  I'm not at all sure I have MS.  Something is very wrong with my body and my thinking.  I think I had the misfortune of being hooked up with an 'evil' neuro.  

No, the evil neuro did not do the Romberg test.  I start to fall fall when I do this at home.  He made me hold my hands out.  My right hand tremors.  He made me touch my finger to my nose with my eyes open and closed.  I could not remember if he wanted me to keep my eyes open or closed.  I kept having to ask.  Maybe that made him think I was anxiuos, I don't know.  I just have a hard time concentrating, doing two things at once.

I had the opportunity to have my IQ tested a few years ago, when I was doing temp work, and I was quite surprised at my score.  I'm more a creative type.  I love to write.  (I write chancel dramas for my church) I was an actor before I got married.  So I signed up for this free High IQ Society (it's not THAT high!) online where they send you tests and puzzles each month to hone your skills, sort of, and improve your mind.  I don't really buy into it so much as it's fun to do and it's a good challenge.  Well, I haven't looked at it for months, because it would take me so long to even get through a test or puzzle.  I wouldn't know where to start.  I can't even tell you how long it's taken me to write this post, and correct my errors.  When I get to work, I don't know where to begin.  I have to concentrate so hard to determine what my prioroties are for the day, and write them down.  Sometimes, I could just cry.  And I'm not a crier.  I know I need to see the psychiatrist, you'll say, and you're right.  But anxiety is not my problem, I don't think.  No tprimarily.

Anyway, we took our boys to the local waterpark yesterday and had a great time.  I hope you had a lovely holiday as well.  The only thing was, it was cooler when we got there, but I was chasing the 6 year old around and suddenly, I could feel my legs just kind of say, "Enough." I started to have trouble from the hips down, more in my right leg, and got my duck shuffle.  I felt fatigued, and started back for our beach chairs, and also, for the first time, I went to scratch an itch on my face an had no dexterity in my fingers.  I lifted my hand, but had trouble actually flexing my fingers to scratch my face.  I haven't had that before.  

I went back to our chairs and laid down and slept.  It was all I could muster.  I woke up and felt better.  It was sunny when I woke up, so my husband drove me home and went back to the kids.  

The kids, by the way, are great about helping out.  They do notice I'm not myself.  Especially the 16- and 18-yr-olds.  I have to write things down ALL the time.  THEY write things down for me, like their schedules, or they know I won't remember.  I have absolutley NO recollection of some conversations.  

Anyway (again) I made an appointment with an MS clinic on Aug 1.  I feel better about this than with the newer neurologist.  When I called, they asked why I was calling, and I said, "I'm losing function.  Cognitively and in my legs."  No more questions asked.  So there we go.  Aug 1 is sooner than Aug 2.

Funny about the Provigil--I used it for a while for sleep apnea, and I LOVED it.  Felt great.  I'll ask about it.  

And I see the psych July 17.  I can hang on until then.  And then two weeks after that...  Maybe he'll put me away, and this will all be for naught, anyway!

Thanks for your good advice and good thoughts.  It really is so valuable.  I hope you're getting some restful sleep.  Being a statue can't be as fun as it looks.  I've been wanting to ask you--is your vertigo related to/a fun product of MS?  what goes on with that?  How do you treat that?  What about the double vision?  Do you still see a different specialist for that?  

Take care.  Feel well.

Chris*  

[Momzilla]

Hi!  Happy 4 of J!

I hope you had a nice holiday!  Yes, I have had all kinds of blood work done.  I was anemic when I was little, but am great now.  All seems to be in working order.  My five boys are all in touch with their inner gourmet, I'm happy to say, and can make dinner when needed.  I want them to be good husbands like their father.  

I'm sorry to hear of your diagnoses.  How is your treatment?  I hope all is going well.  Thank you for writing.  Take care of yourself!

Momzilla*

[karzme]

It's nice that your family helps with meals. Take advantage of that. You don't know what's wrong and waiting for answers can be very trying. Have you checked to see if you are anemic? Some of same symptoms of MS. I have both. Take care.

[Quixotic1]

Hi, I didn't realize the vision disturbance was so fleeting, an ER visit would be silly.  It would sound like a migraine aura, and probably was, and they'd send you home.

How is your family taking this?  Have you had a family meeting to discuss how you're feeling and how they are perceivng it?  Do THEY think you've suddnely gone of the hyper-anxiety end?  If you know that they are concerned for you and wiling to help with the slack (finishing dinner) you should feel less guilt.

About the psych and the LP.  I'm actually glad you have the eval coming up.  I think he will provide you with that ally you need to nail all this down AND be able to support you emotionally through this.   Discuss the LP with him.  He certainly might be able to get it ordered either directly or through the ER or something.   I highly recommend getting it done by radiology under fluoroscopy guidance.  Man, was that slick!   But, if that route does happen, it is critical that the fluid be sent for all the right things!!  The full "MS Protocol" in addition to the other things.  Somehow I suspect that he will defer to the new neuro because that will then be only 2 weeks away.

Did your old neuro, the "evil neuro" send all the blood work for ruling out causing of myelopathy?  I suspect not.  That has to be done also.  I don't remember.  Is your neurologic exam normal?  Reflexes, Romberg (balance with your eyes closed).  Do you have any new problems navigating the house when it is totally dark?  

There are a couple other things he could help you with.  Are you having cognitive problems?  Short-term memory, word-recall, difficulty multi-tasking?  If so, and I think I remember you mentioning this, you need neuropsych testing.  Tell him about these difficulties.  He knows you and he'll likely see the deterioration in function.  Neuropsychologists are specialized PhD psychologists who can pick up and, and document even subtle cognitive deficits distinguishing them from anxiety and depression.  The only drawback is that insurance coverage for it is variable and it's expensive.

I've been reading that a subgroup of people who turn out to have definite MS present with the fatigue and the cognitive problems of MS and that they often suffer the most, because of dismissive neuro's who just don't understand how significant these symptoms are in pointing to MS and how life-altering they are.

Have you considered approaching the nearest MS clinic and pursuing the dx that way?  I was shocked at how quickly I got in here (about two weeks).  Your psych might also facilitate this.  Remember to keep this in mind.  If you start out by saying that you "just know" you have MS, most docs will write you off as a hypochondriac.  So you want to say, "Something is wrong!   I'm losing function here!"  

The other thing that your psychiatrist might consider, and this is "iffy," is treating you with one of the meds used in MS fatigue.  The one I take is Provigil (modenafil) and it is used "off-label" in MS.  Even so, it's seems to be standard practice.  It's even on my Medicare HMO formulary for this use!   My MS neuro put me on it, even before he got the results of the LP back, on the basis of my one lonesome little brain lesion and my H&P.  It is a direct brain stimulant, and is FDA approved for certain types of sleep disorders, shift-work fatigue and, I think, narcolepsy.  Provigil is the only thing that allows me to function.  My fatigue is doubled by the vertigo/MS whammy, and I am literally immobilized.  If I slow down any more they will have to reclassify me as a statue.

Well, I just woke up from a 17 hour sleep and realize that I am not being coherent so, I'll sign off and send you all my best thoughts thoughts.  I hope the holiday goes well.  Stay out of the heat.  

Quix

[Momzilla]

Thanks, Quix.  I really have been longing to hear from you if you're up to it.  I hope you're feeling well.  

Yes, I have an appointment with the psychiatrist on the 17th or 18th.  I'm quite looking forward to it.  I can almost see him rolling his eyes at all this anxiety stuff.  Don't get me wrong; he's very professional.  Do you think he could order a lumbar puncture?  I think that's what I need.  I have emailed my local chapter of the MS Society (not saying that's for sure what I have, but I surely have something), and they recommend lumbar puncture as the next step after normal MRIs, not psych evaluation.  

About the vision thing, it was fleeting.  It lasted about an hour.  So many symptoms are so transient.  (Except the numbness--that seems to be lasting)  Do you think it is significant?  It freaked me out.  But because it was gone by morning, I guess I don't consider it a big deal.  That is, of course, 'presuming' as you say, I do have MS.  I just feel so lousy.   I hate to see my boys have to finish preparing dinner for me most nights because I'm so wiped out after work.  Aug 2 seems so far away.  What if I went to the ER and nothing showed up on the tests there?  I guess that's my huge fear after all this with the MRIs.  Even though I know my body and I know something major is wrong with it.  

Thanks for your kind response,

Take care,

Christina*

[Quixotic1]

I can now be here for you.  You know this psychiatrist right?  You definitely need someone to talk to, and this guy knows your history.  Heck, he's an MD isn't he?  When I did my psych rotations we ordered the work up we needed to diagnose dementia or whatever.  Maybe he can order some of the neuro work up you need.  Or perhaps he can hurry up the visit with the new neuro.

In the meantime,  you can present to the ER and tell them you have sudden loss of this field of vision.  They can emergently refer you to ophtho and you can be checked for optic neuritis.  It's called an "end run."

Do either or both of these.  Stay out of the heat over the 4th, 'kay?

Quix