Calling all limbo-landers limbo check in 12/27/2011

[minivanmama]

Hi limbo island! It's time to limbo. It is a great time to come and visit the island. So grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how your week has been.

I hope everyone had a merry christmas and did not over do it like i did. How are you feeling and doing this week?

Are there any doctor apts this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Any one who needs to scream?

In island news - Welcome to all our new limbo islanders. I am glad that you fund us and know you are not alone as you look for answers.

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


I hope everyone had a good christmas. I over did it and now my fatigue is bad. I am feeling better today and hope that i will be even better as the week goes on.

I have a eye apt this week. Just my one year follow up like every year. So nothing big this week.

I will catch up with everyone later. Good night limbo island and sweet dreams. Lots of (((hugs))) everyone.

[Shashi]

Greetings fellow Limbo Islanders. Thought I'd crawl out of my hammock and say hello for a change. I hope you are all doing well.

I have a sleep study tonight. I had one back in 2007 or 2008 and was diagnosed with sleep apnea. I had to wear a CPAP mask, though I got less sleep with that thing than I did with the apnea. I fought with it all night and would wake many mornings to find it across the room where I'd thrown it in the night, with the machine still running. Since that time, I've had nasal septoplasty and somnoplasty, which I'm hoping have solved the problem. In addition, I sleep with the head of my bed elevated due to GERD, and I never sleep on my back (which was the only time I had apnea.)

I'm really just having the study done because personally, I think there is some type of seizure activity going on either as I'm drifting off to sleep or as I'm sleeping, so I'm hoping it will pick up on it. I guess I'll find out tonight.

After this, I'm not having any more tests done or seeing any more doctors. I've racked up too many medical bills with the deductible on my insurance and the coinsurance amounts, so I've got to pay some of these things off before I can run up any more bills. Plus, since no one has a clue what's going on with me, it really doesn't matter anyway. Nothing's going to change.

I've been in limbo for almost six years. More than anything now, the question I'd like answered is "why me?" Why can other people get diagnosed, and I can't. I don't want MS or any other disease, for that matter. I don't want anything but to be healthy and normal. But I'm not, and what I need is to know why. However, it doesn't look like that is ever going to happen; and again, I wonder "why me?" (Can anyone else relate to that?) I guess all I can do is live my life and try to minimize the symptoms with meds. It doesn't look like anything else is going to happen, even with five brain lesions, a history of optic neuritis, and a plethora of weird symptoms. I guess I'm just not diagnosable.

Anyway, I hope you all have a wonderful New Year, and may you all find answers soon.

Big hugs,

Lisa

[mjan]

Hey there folks.. hope this NEW year brings you preserverance and renewal.

Lisa...Hope you tell your sleep study doc about the seizure-like activity. Otherwise they may think its part of the restless leg "syndrome"..which includes jerky movements. Your signs are much more involved. Also not sure they are equiped to READ an EEG for seizure activity if that is not in their training. Just a reminder..good luck.

Had to laugh as I had dx of sleep apnea using the pillow type hose but still I would move and it would start to hiss and WAKE ME UP!! LOL. I too would end up throwing it off during the night. I never had that rested, energetic type response you're supposed to have. But since I just lost 50 lbs I am hoping apnea is gone. (my neck is thinner LOL).

Good luck.. oh.. I have this feeling it will be a provider outside of MSee world that will find out what is going on with you.. and start to connect the dots.. we can only hope eh?

Hugs, Jan

[jsage]

Hi Everyone!

Lisa and Jan, it's interesting that sleep apnea is in the picture for both of you. My previous PCP wanted to do a sleep study on me, but I've haven't seen the need yet. From what I've read, sleep apnea needs treatment only when your brain forces you to breath several times an hour or more. For me, it's only a few times a night. I don't notice it, but my beautiful wife does. Right now I sleep on two pillows to elevate my head. My wife says it works.

No news for me. Waiting for a call to schedule a nerve conduction test. Despite the pressure of a huge project that's going live on January 3, it's been an easy week for symptoms. Fewer occurences with less intensity. Of course I notice that they quiet down when I'm cold, and our facility is pretty cold right now.

I hope everyone is well and enjoyed the time off and visits with family and friends!

have fun,
- john

[mommyRN]

Hi everyone! Not much going on here... waiting for my 2nd opinion appt. with the neuro still. Symptoms still come and go, but not like they were in the summer/fall. Just wanted to pop in and wish everyone a happy, healthy, and prosperous New Year!

[stalo]

Boy, Lisa...I don't know why on earth drs cannot tell you what is going on with you! I hope 2012 brings you some answers!

I have had 2 incidents of nystagmus (uncontrollable eye movement) that gave me vertigo & nausea. Neither of them lasted very long, so the neuro's nurse who answered my e-mail said they are likely incidental. If it happens again, they're going to recommend PT.

You know, before this "possible MS" thing a year ago, I did not have weird stuff happen to me. I mean, I have had 11 knee operations, 2 of them being replacements, but other than that, just the plain old cold & flu stuff. So, when I am told that this weird stuff is incidental, it just irks me. Maybe true, but how come nothing for years, then this past year, weird stuff all the time???

whatever...Happy New Year everyone & God Bless!

[Shashi]

Well, I cancelled my sleep study. I just can't bear to do another medical test right now and with my wacky sleep schedule (I'm up until 3 a.m.), I know I'd never get to sleep at the time they'd want me to.

Seriously, I'm fed up with all of it. I think sleep studies are just a "fad". People lived for centuries without having to have tubes blowing air down their throats at night. I honestly don't feel that I have sleep apnea anymore anyway. As for the seizure stuff, if it gets to be a problem, I'll call my doctor.

I'm just really anti-doctor right now and sick to death of all of this stuff. I've spent hundreds (probably thousands) of dollars over the last six years, and am no closer to an answer than I was when I started. My symptoms have somewhat stabilized and are controlled with medications. So, I'm off the diagnostic roller coaster, maybe for good, but at least for now, anyway.

I also just cancelled a follow-up appointment my PCP had schedule for me to check on a nodule I've had in my parotid salivary gland for the past four years, and another appointment to have a swallow study, which I've have done several times before. No more tests!

I guess I'm having a medical test rebellion! LOL!

[Lori Lee]

Hi to all,

I have thought of you all and wondered how you all fared the holidays. I have popped on a couple of times and read through the limbo thread a few times the past few weeks.

Things here were crazy busy trying to bring together a Christmas celebration for our 5 children and my family and my husband's family. I am so thankful it is behind us (sad but true). I am very thankful I made it through and able to rest now. I feel so exhausted and have dealt with new electrical sensations, increased spasticity, and over all grumpiness for several days now LOL.

Hope I can catch up with you all. I remember reading some questions I would like to have responded to but honestly didn't have the time to log in. Hope each of you have a restful week.

I don't have anything going on in appointments until Jan 23rd when I go back to the MS specialist....

Lisa: I pray you soon get answers my heart aches at how long you have been stuck in limbo.

Happy New Year's to all!
Lori

[jsage]

I just got the call from Scripps; my EMG test is scheduled for January 10th. The MS specialist, Dr Smith, told me the results of this test will determine the direction of his diagnosis.

I've never had an EMG before; some of the reports here on the forum make it sound a bit uncomfortable. I guess that I'll find out for myself

In the meantime I'm working non-stop on a new system implementation in our manufacturing facilities - we go live on Tuesday. I started this project last March and will be working every day until go-live. After that, I can relax!

Have a great weekend everybody
- john

[mjan]

I just got the call from Scripps; my EMG test is scheduled for January 10th. The MS specialist, Dr Smith, told me the results of this test will determine the direction of his diagnosis.

I've never had an EMG before; some of the reports here on the forum make it sound a bit uncomfortable. I guess that I'll find out for myself

In the meantime I'm working non-stop on a new system implementation in our manufacturing facilities - we go live on Tuesday. I started this project last March and will be working every day until go-live. After that, I can relax!

Have a great weekend everybody
- john

Hey John, hope everything goes well with you long time project YIPPEEE!!

As far as EMG, I can say I never had PAIN or much discomfort at all. The needle are super thin, like acupuncture thin, and do not hurt going in..after all its just a slight stick (not a stab LOL)..and when they turn on the current its quick.

BUT I do my "labor breathing" whenever there may be an intrusive type procedure. Its a steady breath in through the nose and out the mouth while you think of something pleasant or just focus on one object in the room.

As I said I had both arms/neck, then later legs tested, so along with my steady breathing.. it was not an ordeal at all. Now those coming in with FEAR, tend to tighten up and that makes it worse. Then others may disagree as their experience may have hurt some.

Let us know how it goes.. I'll be thinking of you that day.. hoping all goes well.

Warmly, Jan

[Greg]

Hey John, my EMG wasn't all that bad either. Like MJan said the little floppy needle thingy isnt all that bad. I guess if the area being inserted into is hypersensitive could/would be the deciding factor on that. The nurse or tech the administered the test for the nuero, got a kick out of how the test made me luagh. You get a little zap of electricity into the nerve being tested in my case was both legs. I could see how some would feel it painful, but it made me luagh not becuase it tickled or anything just the zap and jumping it cuased through my legs caught me funny. I referred to the test as my "shock therapy" You'll be fine either way even if it causes pain it is so fast that you recover just as fast.

[jsage]

As far as EMG, I can say I never had PAIN or much discomfort at all.

Hey John, my EMG wasn't all that bad either.

mjan & Greg, thanks very much. Now I can pretend to my wife how tough I am

have fun,
- john

[Greg]

JSage

I would bet for someone watching it problably would look very painful as the electricity makes your nerves jump and that long floppy needle being stuck into your body, so if you take her along you might be able to get some pretty good sympathy attention and lovin. lol could be a worth while endevour

[jumpinjiminy]

Hi all. After nearly a two-week stint in my hammock, it finally dumped me today and other than the winter blues hangover, things are finally starting to let up again.

I think it was another little mini flare. The blurred vision is finally letting up for hours at a time, and I'm not waking up with heavy legs anymore. The paresthesias are finally fading and my energy has been improved the last couple of days. Time to get two steps ahead for the next step back.

Lisa, I will go on medical test strike with you. I just plain don't want anymore. We even bumped up our insurance coverage to cover them 100% this year, and I'm hoping I don't need to use it.

I hope the new year brings everyone peace, prosperity and good health.

Happy New Year, and hugs to all.

[KRISMARK0]

Hello,

I'm new on the island. I am being tested for MS due to numbness/foot-drop in my right foot, leg spasticity, and vision problems. I wouldn't say I'm really in limbo yet since my first test (MRI) isn't scheduled until Tuesday. If this test doesn't reveal anything, I think I will go on the testing strike as well, before I ever have a chance to get sick of them...one test is enough, lol!

(Well, I guess I did have a chest x-ray, 2 rounds of blood work, and a cardiac work-up in the past two months....but that was due to chest pain, which is most likely GERD)

Honestly, I don't want to go through a bunch of testing because I did that for years with pelvic pain that I used to get all the time. It took 3 or 4 years to find out I had adenomyosis along with my irritable bowel and bladder. Thankfully pregnancy made all of those things much better and I have been feeling quite well.

Actually, I probably feel the best (mentally and emotionally) I have in my entire life. I have a 2 year old that makes me laugh hundreds of times a day and that is great for my overall well-being...now if my legs would just behave appropriately...