Calling all limbolanders-limbo check in 3/15/2011

[minivanmama]

Good Afternoon Limbo Island! It's time to limbo! The sun is shining and the water 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. The island is waiting.

How are you doing/feeling this week? I hope everyone is doing better and haveing a good week. I am praying for better weeks ahead.

Are there any doctor apts this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Don't forget that if you need to scream to go to the middle of the island. Remember that you never scream alone.

In island news - There is no island news this week.

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


Well i am off to target. The fatigue is bad today all i want to do is sleep. It does not help that it is raining and gray out.

I will check back soon. Have a good day limbo island. Lots of ((((hugs)))) everyone.

[Look2theStars]

Hey mama,

Doing good here actually. Feeling the best I have felt since this all started back on New Years Eve.

I'm on Neurontin, 3 pills a day for now. Working really well.

Walking a lot, exercising a lot too. I got a Wii Fit and it's wonderful. Makes a workout easy. I don't have to go to a gym either. If I walk a really long distance my leg will kind of start burning and feeling weak. But I am so much better, and feeling great. My hand is a tad numb still, but no biggie.

My next MRI will be in late April, to see if there's any changes or new lesions. I believe I'll start Copaxone shortly after. Gotta figure out all the insurance stuff.

Other than that, doing great. Hope your well!

[barelracer]

lol....

sons appt went well, moving along towards diagnosing him! (not for ms...yet)
so to celebrate and blow off steam, my bestie and got new tattoos...lol..(what rebels we are...)
they say WFE..with roses...(what f'ing ever..)
cause we say that everytime a doc tells us bad news...our way of dealing!
never feel "good" enough to go out and blow off steam, so, this was it....heehee....
lifted my spirits alot!
hope everyone is doing well as can be!
back to the hammock...

[Chelenae]

Hello All!

I decided today that since I hadn't heard anything from neuro after my tests 11 days ago that when I go in on the 28th he's going to say they didn't find anything.

I don't know if that makes me happy or frustrated lol.

Today was my shakiest day in a long time. Couldn't even hold a paperback to read. Tried to take a nap and couldn't relax. Okay Pity Party is over.

Hugs and Prayers,
Chele

[Greg]

Hey everyone Simon Med called today to schedule that Arterial Doppler exam that is set up for this thursday. I called and set up the follow up for wed next week.

Just out of curiousity this will be ruling out circlatory sys, emg ruled out perifrial nervous sys. Any other things my doc is going to have to rule out before I can get the neurological exam of the cns?

[minivanmama]

look2thestars - Good to see you. I am glad that you are doing good and feeling good. That is good news.

I am glad that the neurontin is working. I hope that you stay feeling good for a long time. I hope in april you will get some answrs.

Keep up the good work on your wii. Lots of ((((hugs))))


barelracer - Good to see you. I am glad your sons apt went well and moveing along to a dx. I have to say that is a diffrent way to blow off steam. I am glad that you did it.

Enjoy your hammock and your new tattoo. Take care and get some rest. Lots of ((((hugs))))


chelenae - Good to see you. I am sorry that your neuro did not call. I hope you will get some answers on the 28th.

It is ok to have a pity party here. We all understand. I hope you will get to feeling better and you shakes will go away.

Get some rest. Lots of ((((hugs))))

Greg - Good to see you. Wow that was fast. I hope this will help the doctor rule thing out so you can get some answrs.

diffrent neuros have diffrent test they want to do to rule thing out. I know it is so hard to have tests and get no answers and just keep ruleing things out.

Keep hanging in there. This is just all part of being in limbo. I hope your follow up vist will get you in the road to a DX.

lots of ((((hugs))))


Well i am off to bed. Good night limbo island and sweet dreams. I will check back in soon. Lots of ((((hugs)))) everyone.

[jumpinjiminy]

BR, you crack me up. Is your son seeing the same neuro as you?

Chelenae, I absolutely hate the shakes. That's how I know my flare ups are very active. Besides the fatigue and blurred vision, the shakes are the one of the worst symptoms for me. Doc bumped up my baclofen this week because last week's flare up came with disturbing shakes, and this week too.

Greg, they are running far different tests on you than they've suggested on me. Must be an age/gender/medical history difference or something.

So my little flare up last week got better, then son started showing signs of viral illness again and so did I and guess what? It came back. Shakes, fever, blurring vision, fatigue, muscle spasms, heart palpitations and all. This time with a migraine. And all with some big hair loss. Did I mention bone crushing fatigue this time? So I called the endo who scheduled another blood test for thyroid recheck.

But I'm like a little kid about it. "I don't want to go to bed. I want to . . . " LOL. Bah! I've been bad about not sleeping when I should be. That didn't help things.

Saw my GP yesterday who said no prednisone taper until this clears. It won't hurt to wait another week or two at this point. What's the hurry. You don't go off a med when you aren't feeling well. You wait until you are better. That's the point in taking it in the first place.

Then we got on the subject of the dexa scan I had a couple of weeks back. It was not good. I'm in my early 40s and have the bones of a 65yo already. Because of my fluctuating blood calcium levels, high normal parathyroid levels, long history of heart palpitations, height loss in my 30s, fatigue, and nervous system symptoms, and low vitamin D levels (even lower after being on high dose supplementation for two months), he immediately ordered a parathyroid scan. Maybe IT will show something.

It was a shocker, to say the least. I've always considered myself to be pretty healthy. Who would have ever guessed something so horrible was happening underneath the surface all along.

Anyway, I got a long nap in the hammock this afternoon, the fatigue is finally lifting, headache gone, fever going down, I think I'm slowly on my way back up now. Long, long day of running tomorrow. Relief is coming just in time. It's a light weekend ahead. I look forward to the break.

Happy Wednesday, all!

[Chelenae]

Today I got my EMG/NCS results back. They were normal. But they still won't give me any info on my MRI's until I see the Neuro on the 28th.

Is a normal EMG good for not having MS? I hope so lol.

Hope all of you"Limbo" thru a good week!!!

Hugs and Prayers,
Chele

[leahchris]

Still in limbo after 20+ years!

Hi all.
I'm back in limbo. I have had every diagnosis from absolutely you have MS to you don't have MS and am back to possible again! Now, my neuro thinks I may have NMO, but his office screwed up the blood test and I have to have it done again. I also have to have 3 MRIs when they get them scheduled. I guess I am fortunate that I have been relatively stable for about seven years.
That means, of course, that I still have ll the problems the last major flare left me with, but have learned to cope with the status quo.
I am really glad I found this forum. Limbo is a lousy place to be.
Have a great weekend.

[boylecen]

Well right after my LP-which went well, I got the cold everyone at work had....thought I had bested it only to have a major sinus infection develope (docs feel it was because I'm weaning off pred pills) This past week I had all 3 of the "evoked potential" tests done-sedated for the somatosensory one which was not pleasant. Doctors office called Thurs to see me. But went back to work too soon and have been struggling with severe fatigue so didn't call back... I'm tired of being tired. All I do is go to work and come home and collapse...and spend the rest of the time trying to rest up for work again. I live alone and there's no one who cares so what m I doing all this for??...sorry for the "pity party" just frustrated. thanks for letting me vent

[barelracer]

hello!

hello limbo!
hey JJ! my son has a different neuro, but has worked with mine in the past, so that makes me feel better! he is going to have another mri to see if his "spots" have changed(prior brain scan)

Have had a GREAT few days on prednisone high dose, but just a taper, so ewww..wont last! Start my taper down tody.. *sigh*.

They put me on it for my eyes, and headache that had gone on 5 days...at night the headache comes back and lasts til i take the pred agian...but wow, love the hours of sx relief I get!!!!

well, I am going to climb in my hammock for a bit, lol, I have been over doing it, and loving it! but it takes a bit for the pred to kick in, so nap time!

Hope everyone is doing as well as can be!

[minivanmama]

jumpinjiminy - Good to see you. I glad that you are on your way back to normal.

I hope your weekend was good and that everyone is feeling good. Take it easy and get the rest that you need. Lots of ((((hugs))))


chelenae - Good to see you. I am glad that your EMG/NCS was normal. That is good news.

Yes people with MS have normal EMG/NCS. I am glad that you have ruled out things. Have a good week and i hope you will get some answers on the 28th.

Lots of ((((hugs))))


leachris - Welcome to the island. I am glad that you found us and know that we all know how limbo can be.

I am sorry that you have been through all that just be put back into limbo. I know that is frustrating. I hope your NMO test will give you some answers.

I am sorry that after 7years of being stable that it has come back. I hope that it will go away soon and you can get back to feeling good.

Just know that we are here for you anytime you need us. I hope you have a good weekend. Lots of ((((hugs))))

boylecen - Bless your heart. I know it is so hard to feel tired all the time. I hope you get to feeling better and that you can talk to your doctor soon.

We all care about you and want you to find answers so you can get better. It is ok to vent being in limbo is very frustrationg.

Just know that we are here for you anytime. If you need to vent/talk more you can e-mail me. Lots of ((((hugs)))) to you.


barelracer - I am so glad that you are feeling better. I am sorry that you now have to go down off of the pred. I know how pred can make you feel so good.

I am glad that you are enjoying all the time you have while feeling good. Enjoy your time and do try to rest. Lots of ((((hugs))))


Well i have been sick so i have not been on the boards. I am feeling better now. so i am off to bed limbo island good night and sweet dreams.

Lots of ((((hugs)))) everyone. I will start the new thread in the morning. I hope to see you there.

[jumpinjiminy]

Hey, checking in. Friday everything took a turn for the worse and I've been so sick all weekend I've been on the verge of going to the ER. Nausea, dizziness, blurred vision, I've barely been able to care for myself. Tingling mouth, tongue, throat, inside the chest, and pain under the right side of my rib cage in the front and back.

I think my gall bladder might be acting up. It feels like I have a lump in my throat all the time, like I could throw up. The fatigue, brain fog and confusion have been horrid. Just waiting for the docs to come back tomorrow to give them a call. Pain in the forehead, yuck. Just pure yuck.

Then I picked up a CT scan from last year that noted I had periportal edema of unknown origin. And nobody told me about it. This was six months before any of the big stuff hit. We may have been chasing down the wrong road this entire time.

[barelracer]

hello again!

Wow, to be dx'd with ms then told not...! seriously, that would be rough! I hope you get answers soon, you deserve some, really!

JJ, sooooooooooo very sorry to hear you are not feeling well again!!!! And the edema?!!! Doesnt suprise me they didnt tell you, its like they if they see something, but werent looking for it specifically, they let it go!!!
Have you said anything about to them yet?

They didnt tell me about my son being anemic(despite his showing sx's!) for 3 months!!THEN started treating it!!

Thats why I pick up his records as well as mine now. Guess as patients we have to be very proactive in our own care!

Reading all these limbo posts, and those of the dx'd, you see this pattern over and over, its a shame!

I hope everyone here feels better, and gets answers, soon!

[minivanmama]

jumpinjiminy - I hope you will get to feeling better soon. I hope your doctor will call and you can be seen.

I don't know why doctors did not tell you what they found on your CT. How frustrating.

Let us know how you are doing. Lots of get well ((((hugs))))

barelracer - You are right we have to be proactive about our care. It is a shame.

Take care lots of ((((hugs))))


OK time to start the new post. I will see you on the island.