Tick like Spasms

[ShadowsSister]

I read Mokie's post about her spasms and was relieved to know I wasn't alone.

These started out with a tick like movement in my neck and head, for about a half a day, Than they stopped last Thursday they started hitting in both my shoulder blades, really hard they are just awful. I feel like I have cracked another vertebrae and it is hard to breathe to the point where I have to open my Trachea Tube a few times a day. These darn things have hit my legs, hands, ( I hate pouring coffee all over me and my blankets), than to top it off they are now hitting my ribs. To me it feels like getting hit with a cannon ball. or that I am snapping like a Dam#@#
rubber band.

This is bad enough that I have given in and will be seeing a Neurologist tomorrow. I got in so fast because Dr. Yamada, made the request that I be seen ASAP.

Mokie, I'll let you know what I find out about what is going on with us. There has to be some answers out there, neither of us can go on like this much longer. I thought  the hugs were bad, they aren't even close. UGH ! !  ;-(

The double vision is still going strong, the hugs too and now the ticks.. I was hoping 2010 was going to be better, but so far.. it sure doesn't seem to be going in that direction... CRAP-OLA that's all I can think to say...

Mokie, I am so sorry about your co-workers Husband. How awful. I will keep her in my prayers..

I have so much going on with my kids, I haven't even began to deal with loosing my Mama, but know I will deal with that when the time comes, we just can't force some things can we.. Now my Kids are thinking they don't want to live, but their way of thinking just isn't an option, and I told them so.. I also told them they were being very selfish and they needed to think about their Children and Spouses.. Maybe I don't sound too loving, but HEY, they aren't in this life alone, They have families that need them

Sorry this post is such a downer but that is where I am at at this moment. I know in my Heart That I can handle this stuff, because my Heavenly Father is carrying me right now. I put every one I love into His Hands because He can do a much better job than I could, my job is to Pray for every one and try to remember that we can deal with what ever life hands us if we hold on to our Faith.

A Good thing is Happening, My Daughter Lori, the one from PA. is hoping to come back out the 1St part of Feb. and this time with an open ended ticket.. Isn't that AMAZING, my Doctors don't think I should be alone at night. My Doctor has requested a round the clock care 24/7, but they IHSS are dragging their feet, due to Our Governor Terminator wants to do away COMPLETELY with "In Home Services", you read that right,  STUPID ! ! !

.....LULU: you did Good, Girl Friend, Very Good    Another good Thing, MS-AA sent me a Beautiful Manuel Chair. It is so nice to not worry about the Duct Tape giving way.. Happiness and Joy..  Lulu, Thank you for having us all check Them Out.. They are so easy to work with, Very Kind and Thoughtful, They had already sent me the Cooling vest, and it really works, I won;t have to stay locked in doors when it get hot next summer..
Thanks Again Lulu. ;-)   See there is always some thing to smile about,  you just have to remember the GOOD STUFF while you are dealing with the YUCKY stuff..

So hang in there, know that I keep each one of you in My Heart and in my Prayers.. I know that God is watching over every one for me.. AND I am continuing to send each one of you my hugs so catch them on the breezes blowing by... Love, Hugs and Daily Prayers {{{{{{~!~}}}}}} DJ

[Lulu54]

Hi all,
DJ is going today to the neuro - this is a big step because as she wrote, she hasn't gone to a neuro in years.  You may wonder why - they did the very same thing to her as many of you have gone through  - they dismissed her as a patient because they didn't know what to do for her, even though she definitely has MS.

Many of you know the despair you feel from those type of medical appointments, and often give up on finding help.  

Consequently, DJ has managed to put together a great group of doctors who take a personal interest in her care and have helped her through these years.  Unfortunately her problems now are much bigger than they can handle.  

DJ- I am so glad you wisely agreed to go back to a neuro.  I hope this one treats you right!

lots of gentle hugs,
Lulu

[mokibear]

Hoping you made out okay today DJ. I'm thinking of you and hope that you were able to get some help.

I don't mean to hijack your thread but I do want to respond to Quix.

Quix, yes you are right that my neuro's have copped-out. They say they think I have something new and that the technology isn't out yet to determine what. The only thing they all agree on is that it is affecting my CNS. They all seem to agree though that I'm not worth seeing anymore.

Right now I am back to the original head jerks being that the timing is around 5-10 minutes before each jerk compared to the 2-3 minutes I had for 3 nights. As to whether they are tics or jerks, honestly I don't know how one determines one from the other, all I know is that I don't like it. lol

I have to see about maybe borrowing a video camera from someone and see if we can get it on there and maybe then someone will take a look. I'm just really tired of it all.

Hugs to you both
Moki

[Quixotic1]

Hi, just to clarify, "tics" can be HUGE, involving entire segments of the body and, in their worst form, can cause severe injury to the body.  I have taken care of kids with severe Tourettes who's tics caused deep ulcers on their jaw from slamming into their shoulders  - sometimes causing dislocation of the TMJ, or whose hard, almost thrashing limbs strained and injured joints.

I used the word "tic" (which does sound mild, but isn't necessarily) because of the rhythmic nature you seemed to describe.  Yes, these might be huge myoclonic jerking.  The words we use here aren't too important, but the sense that these jerkings are not random and irregular, but sounded like what I have seen with severe, rhythmic tics.  I wasn't making light of the severity of them at all.

In any event, these appear to be a type of severe movement disorder in Moki's case.  I fear with her current doctors she will not get help, because they seem to have adopted the cop-out that she has an undiagnosable, never-before described new disease.  Am I right about this, Moki?  I wish these could be placed on a video and sent to some great minds along with her timeline.  There is help somewhere for her.

Quix

[mokibear]

Hi Dear Lady, I really hope it goes well today at the appointment. I'll be thinking of you and really pray hard that he can figure out what is going on. I just hope there is an explanation for this and that they can help you. You have been through enough and I know how awful this is for you.

I'm sorry too with what is going on with your kids but Ess is right that you have enough on your plate right now. You need to keep your focus on yourself right now, it will be good though that your other daughter is able to come with an open ended ticket!!

I'll be watching the posts today to see how you made out.

Hugs
Moki

[Karen99]

I hope your visit with the neurologist went well.  It's been 14 years since you've been to a neuro?   Well, I hope this one was a gem and can help you with the awful spasms.  

Let us know how your appointment went.   I have been thinking about you.                                                                                          

[Wobbly]

I hope Moki and DJ feel better soon, I wish they had a answer for this horrible Spasms...they get so painful at times and it sounds like you both are having a very difficult time with them.  

I hope you feel better soon... Hugs to all, thinking of you

take care
wobbly
dx

[essdipity]

Hi, DJ. It's so nice hearing from you again, even if the news is not good. I'm so sorry about your increase in pain. It's good that you're being seen right away.

I did want to say that what you and Moki are going through is far worse than tics. A tic is more like a tiny muscle twitch, but the body or extremity doesn't actually move. People often get tics in eyelids, and I'm having one now in the heel of my hand. These are annoying, but that's all, and don't represent a disease process. I'm pointing this out because a lot of readers aren't clear on this, and may worry needlessly.

What you and Moki describe are more like giant spasms. That IS something to worry about, especially with the pain they bring. You are a veteran in dealing with this kind of thing, sad to say, and I hope you and your doctors will come up with a solution quickly.

Do your best not to worry too much about your kids. I know, easier said than done. But you have enough on your plate as it is. How nice that your daughter will be visiting again. Maybe while she's there she can help look into more care solutions for you.

I'm still wishing you a better 2010, and am sending many hugs your way.

Take care,
ess