Calling all limbo-landers limbo check in 11/1/2011

[minivanmama]

Good Afternoon limbo island! It's time to limbo!! The sun is out and the weather is great. Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how you are doing.

How are you doing/feeling this week? I hope you are feeling better and not to busy. Keep hanging in there everyone. Know that the island is always there when you need a rest.

Are there any doctors apt this week? Any test this week? Any doctors or nurses that need to swim with the sharks? If you need to scream go to the middle of the island and remember that you never scream alone.


In island news - Welcome to all our new limbo landers. I am glad that you are here.

If you are undiagnosed then this is the place for you. Come and tell us your story. The island is waiting.


I am sorry i have not been checking in. My kids have been using the computer for school work and by the time they are done i am so fatigued to check in.

This is a busy week. My birthday is tomorrow and i go and see the eye doctor on the 3rd. Then on friday i work at the church. Over the weekend my son has his birthday party. So just busy but a good busy.

I am doing ok. Just trying to get my right leg better and dealing with the fatigue.

So i am off to get kids off the bus. I will try to check in later and (((hugs))) tp everyone.

[maitrimama]

Hi All

I hope everyone is hanging in there. Everyday I pray that we all have the strength and courage to face each thing put in our paths. I am not sure what I believe in but I feel there most certainly something much bigger than me and me thinking that I am in control is asking for trouble

By Friday of last week I was feeling much better, except for the vision. Silly me even thought about cancelling a Dr's appt. After shoveling a little snow and going to the mall Sunday evening I felt like I was hit by a truck - shooting pains and muscles twinging, tightening in my arm and leg, involuntary movement a new one...a pain shooting up the right back of my head. Oh yeah, they ever present numbness, burning on the right side of my face intensified.

Not even going to bother calling the Neuro she says this anxiety and stress. I quess I keep my appt for a second opinion.

[asiel1]

I am still here. Get results tomorow. fingers crossed. I gave my cabana boy to Shashi, so I am making my own coconut milk smoothies. I should warn ya'll that dang coconut milk unleashes the talker in me-- and that's a good thing.

LBJ

[photomama]

Hey all. Been awhile since I've checked in.

I had a surprise neuro appt last week- she felt bad for not getting me in to tell me about my last test results. LOL All my test results were normal (big surprise), but it is so nice to have a neurologist who cares for once.

I am losing my hair big time on the Topamax so that is depressing! Fortunately, I started with a massive amount. Just don't want to lose anymore. My symptoms are continuing to progress, especially my hand tremor, so I won't give up the Topamax since it's the one thing that is helping the tremor.

I've been fighting fatigue and we've been playing with spasticity meds and what works without knocking me out. Yet, I've been taking on more and more stuff to do. Stuff I enjoy, but it's a catch 22. How long do I get before I collapse? But I want to take advantage of the times I'm feeling good too. Hmm... balance!

Hope all is well (or at least treating everyone as gentle as possible). Limboland can be rough. ((hugs))

[ChristieAnn67]

I am limbo lander....

I guess that's what I am when my neuro says we will "wait and see". Just today had my follow up MRI of my brain. I feel real weird afterwards. Kind of lightheaded, and spacy feeling, then tried to go shopping and just got flat out nauseated, so here I am at home. I had this MRI with and without contrast, the first brain MRI was just without contrast. I hope there are no changes in my lesions, because then I don't have to have another one for a year. Hope you all are ok.

[lynnepynne]

Hello everyone!
maitrimama

and me thinking that I am in control is asking for trouble

Aint that the truth!!

Hope you recovered fast from your silly anxiety provoked full body freak out (I'd be laughing if it wasnt so sad that Dr's can be so dismissive)

Um, I am doing ok.
Aside from the worst bout of trigeminal neuralgia thus far. I am starting to really "get" that people call it the suicide headache. I am on day 5 and each day it seems to worsen despite the gabapentin finally building up enough to cause me to walk funny and not focus my eyes. How long will this last?!? Anyone have some ideas!?!?!

It is scary bad pain and at times I am just falling apart from it. (just two hours ago I couldnt open my jaw or speak because of the pain. Even crying seemed to hurt me)
Also my pee-pee problem.
And the jerks and tics which are getting worse (probably due to the meds)
And the burning that has returned to remind me how painful it was.
But I'm ok. Just tired from it all.
Some whine with my self-pity? Yes please!
Thanks everyone for listening!

And minivanmama, I still chuckle everytime I read your name. So adorable!

Evenin' all,
Lynne

[derrie]

Sounds like this week isn't going to be easy for our little limbo posse. But we'll get through it; we always do.

I have crossed the line into the "medical mystery" category. I think my neurologist finds this vaguely thrilling; I feel otherwise. All of my LP test results were normal, so with clean MRIs and a clean LP (and also a few thousand dollars' worth of normal blood tests and a normal EMG/NCV), he doesn't think I am at all likely to have MS anymore.

So, now that we have no clue what is wrong with me (my symptoms remain the same, and constant now for two months: symmetrical distal paresthesia in all four limbs and pain -- oh the excruciating pain that is deep in my limbs, but they're not tender or swollen or what have you), we're experimenting with steroids. I'm on a Medrol Dosepak this week. I started yesterday, and I swear it has made my pain worse by a few magnitudes. Can steroids do that? But I think the tingling in my hands is somewhat diminished, so maybe the steroids are doing something.

I'm utterly exhausted and frustrated with being undiagnosed with whatever this is, and I have no idea what else to do -- or to let my doctor do -- because according to my lab tests, I am practically perfect in every way. Except for feeling completely abnormal.

I thank my lucky stars every day that I have a neurologist who believes there is something off in my body, even though no test has yet confirmed it, and he's willing to pursue identifying and fixing it.

That said, this is expensive and tiring, and I'm really, really over it.

[asiel1]

Um, I am doing ok.
Aside from the worst bout of trigeminal neuralgia thus far. I am starting to really "get" that people call it the suicide headache.

-- Ha.. I hear ya. I had a week long bout of it this summer. I never knew what it was before. On day four I finally figured out after reading this board. The suicide headache is a good definition. I have no meds for it. I just go to bed and rock back and forth while holding my jaw.

That reminds me.. I need to talk to doc about this tomorrow. It is one of the worst symptoms in my opinion.

In years past, I thought it was a toothache. There were times I wanted to get all 1880's and pull out all of my teeth on the left side with a pair of pliers with a bottle of jack daniels for sedation. Luckily, I re--thought that and went to the dentist.-- being vain and all.


Who said pretty much the same thing the neuro says... there's nothing wrong...

Now give me your copay and go home.

take care,
LBJ

[minivanmama]

Maitrimama - Good to see you. I am glad that you did not cancalle you apt. I hope that you will get to feeling better soon.

Lots of (((hugs)))

asiel1 - Good to see you. I am praying that you will get answers at your apt. Keep on talking and let us know how your apt went when you can.

Lots of (((hugs))) and call for a new cabana boy.


Photomama - Good to see you. Don't do to much and make your fatigue bad. I am glad that you have a neuro that cares. That is great.

I am sorry that you are feeling bad. I am glad the topamax is working but i am sorry that it is makeing your hair is falling out. I hope that will stop soon.

Lots of (((hugs)))


ChristieAnn67 - Good to see you. I am sorry that you are in limbo. I hope that you will get good news soon and that you get to feeling better.

Lots of (((hugs)))

Lynnepynne - Good to see you. I am sorry to hear that you TN is so bad. BLess you heart. I would be crying to.

I hope that you will get to feeling better soon. I know with everything going on at one time it is just so hard. Get rest and get to feeling better.

Lots of (((hugs)))


derrie - Good to see you. I am sorry that you are still not getting answers. I am glad that you have a doctor that wants to help you.

I hope you will get to feeling better and that your pain will go away. I hope the medrol will work.

It is very frustrating to not have answers and i know how you feel to just be over it. Keep hanging in there.

Lots of (((hugs)))


Well i am off to bed. Good night limbo island and sweet dreams. Lots of (((hugs))) everyone.

[maitrimama]

Sweet Dreams of Ice Creams

Goodnight and God Bless to All

[Lori Lee]

Happy Birthday MVM Hope your day is wonderful and blessed!!! I appreciate you and always look forward to seeing the new limbolander thread even though I often don't feel up to posting. Good busy= making time to rest.

I am loving the weather and it seems to make me feel a little better. Over the last three days I have an increase in strange tingly sensations on left scalp and at the top of my left leg. More continuous than in the past.... Not sure what that is about.

I had a nice surprise yesterday. My PCP's nurse called, just to check in! They had been talking about me and realized it had been since June since I had been in and they were wondering how my specialist appointment went.

I had been meaning to call and let them know. However I had been so relieved that the MS specialist could see what was going on and was the third DR to say I was very suspicous for MS. I just decided to rest.

I do need to go in as I need refills on my Thyroid meds.
It just nice to know someone cares and wants to follow up with what is going on.

Hope you all have a good week.
Blessings,
Lori

[Mama_Darwin]

MVM, happy birthday! I hope everything goes well at the eye dr today.

M, snow shoveling can be brutal! Good luck on your 2nd opinion appointment.

LBJ, any results yet? I'll take one of those coconut milk smoothies. Will it make me see bunnies?

Erin - there are a lot of fabulous hats in style this season. Good luck with keeping everything in BALANCE.

- Beck

[derrie]

HAPPY BIRTHDAY, MVM!

Happy birthday, Minivanmama!

I hope you have a wonderful day with your family. All the support and cheer you bring to folks on limbo island -- even when you're not feeling so great yourself -- is greatly appreciated. Thank you so much for being the wonderful person that you are, and I hope you have a spectacular special day!

[warriormomma23]

Back again

I got married in September and gained two sons.

New neuro appointment tomorrow. My DH will be going with me and I am very excited to get a second opinion.

Fatigue is killing me right now; however, life is good overall.

Going to search about disability and see what I am eligible for as far as short term, because getting to work has been close to impossible as of late.

[derrie]

Steroids are magical?

So I'm on oral methylprednisolone (Medrol), and I think it is magic. Seriously. After two days on the drug, my symptoms are so diminished that it is almost miraculous. My tingling is down to a vague tingle in my thumbs. My legs barely ache (like, we're down to 2.5 on the pain scale from a persistent 7-8 for the past two months).

What does this mean, though, if I have all normal lab tests, but steroids are magically making my symptoms fade significantly? Anyone have ideas? Has anyone else had experience with steroids?

(Also, congrats on your marriage, warriormomma! Sounds like you have your hands full-- but with happy, family things.)