Calling all limbo-landers limbo check in 2/21/2012

[minivanmama]

Good Evening limbo island!!!! It is a good time to come and visit the island. So grab a hammock and a cabana boy or girl and order something to eat and drink. Hope to see everyone on the island soon.

How are you doing/feeling this week? I hope everyone is feeling better 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 landers. I am glad that you have found us and keep posting.

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


Hi everyone - Thank you for all the kind and encouraging words last week. They really touched my heart. Again thank you from the bottom of my heart.


I did get rid of my MS neuro and will see my new neuor in april. This was a hard step to take but i know it is for the best and it will all work out. So on that note it is time to let his staff meet the sharks. So all to the shark pit.

I am praying that this will be my last week of PT. I don't know how much more i can take. I am still in pain from last week.

I had a hard week last week. My migraines are really bad right now. I am feeling better and have been migrain free for the past 2 days.

Well i am off to get dinner ready and help kidos do homework. Lots of (((hugs))) everyone and see you later.

[jumpinjiminy]

Would you like a cheering audience for the shark pit, Minivanmama? Roo! Roo! Roo! Roo!

I'm glad you were able to make a decision and move on. Seven years is a very long time. I've not been here that long so am not familiar with your story. Did you have MRI lesions or any other positive tests?

I've not had an MRI in over a year and a half. It sounds like the timeline for the next one might be at three years, if ever. Although, I have to say his assistant made it sound like I should have called in two months ago after I'd just been in there. She was shocked I was considering waiting for my followup in the summer. I feel darned if I do and darned if I don't. I'd rather use that time, money and energy on something that makes me happy rather than causes me more stress and anguish. You know?

We could go round and round like this forever, couldn't we? I hope your new neuro does a better and more thorough job for you. You deserve it and have been more than patient enough with the other one.

Many hugs. I need to crawl in my hammock now to doze off. Getting upset over this next appointment has given me a headache. I've got to catch it now or tomorrow it will probably be a migraine.

Have a good night, minivanmama and other limbolanders.

[PrincessL]

So tired of Limbo Land

Hello fellow limbo landers. I'm still fairly new to these message boards, so I'll try not to mess up

I've been in limbo for almost 4 years now. I've had several mri's that show lesions on my brain, spinal fluid with o-band activity & some "slight" (neuro's word) symptoms off & on this whole time.

A couple months back I started having new, weird things happen (numbness in personal areas & hot burning patches all over). I wanted to call my neuro, but at my last appt. over a year ago, he told me I couldn't be diagnosed without a "major" episode. So instead I went to my GP.
I told her how frustrated I was & asked if I should see someone else. After reviewing my chart, she agreed that I should get a second opinion. She found me a MS specialist in Indianapolis that I'm seeing tomorrow

Now, the night before my appt, I'm a nervous wreck & can't remember anything I wanted to ask. Maybe my previous neuro was so vague because I didn't ask the right questions before.

Is there anything I should be asking? I feel like I get more answers right here on the site than at my doctor's office.
Sorry to rattle on, but I feel like this is my chance to finally find some answers, but I'm too nervous to even speak

[Daphnesmommy86]

MRIs normal, neuro said to follow up in a month. Wish everyone else luck.

[jumpinjiminy]

Welcome, PrincessL. I'm sorry nobody addressed your question before the appointment. Someone once told me to focus on the one main symptom and let it go from there. It's hard to do when that one symptom changes often and has many others companions. I forget to mention a lot of things too, but have found it's best to just let it go. The docs get on a train of thought and like to pursue that for awhile. They are human and there is only so much that can be processed at once. Right? How did the appointment go today? Let us know if you get the chance.

Daphnesmomma, congrats on the clean MRIs! Good to hear you have a followup scheduled soon, too. I hope the clear results help allay your fears.

My appt. went well, although the drive sucked. One of these days, I'll get there without a detour! I'm starting to understand what this neuro is after and am okay with it. It appears he's not looking for an overall disease process or label as much as he is a biochemical process and solution for it. The way he explains it makes complete sense, and so I'm going to have to trust him, and ride that train and see where it goes.

Apparently, there is some connection between migraines and narcolepsy. He expounded a little on both and how they're related. I can't tell if he thinks narcolepsy might be part of the issue for me, but it sounds like it could be at times. The sleep weirdness is a sort of indicator, I guess.

So the new plan is to try a new med. They always sound good when you read up on them, but dealing with the side effects is often a showstopper. This one sounds like it might work, too. We will see.

I feel better now, and I'm glad that's over with.

[minivanmama]

Jumpinjiminy - You made it through. Way to go. It sounds like it went well and i hope that the meds will work. Just know that we are here as you take this next step.

A chreeing setion is always good at the shark pit. As for your questions. My MRI is normal. I have had 3 emg's in the arms and legs and one on my neck and they have all came back not normal. I have had some abnormal bloodwork that showes a lot of inflmmation. My neuro exam is abnormal but does get better at times. The eye test they do that i can't remeber the name of is on the boarder line.

Thank you for thinking of me. I hope you get a good night sleep. I am so glad you went and it went well. lots of (((hugs)))



PrincessL - Good to see you. I hope your apt went well. It can be hard to remeber questions. I agree with Jumpinjiminy and also write things down. I hope this will help next time.

Let us know how things went when you can. Lots of (((hugs)))


Daphnesmommy86 - Good to see you. Glad you got good news. I hope your follow up apt will go well. Lots of (((hugs)))


PT went well to day. I will see the DR next week and see what they want to do next for the leg pain.

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

[Miss Ginny]

Grandbabies are here!!

Minivanmama-I m coming to the shark pit speed haste... Woooooo!!! Hooooo!... I am sorry PT is so grueling... but at least the migraines are gone... ((hugs)).
jumpinjininy- wake up sweetie got homemade fudge great for headaches...I am glad your appt went well and it sounds like the new doc has a plan and that is always good.
princessL- good luck at your appt... sorry if this is posted late...write down what ya feel is important that is what I do... it helps when brain fog hits...
Daphnesmommy86- just sending ((Hugs))

Well ya all this past week has been one for the record books.. my eldest DD had her baby girl Nyeonna Eliya (6lbs 13oz 19in)early on the 17th... DD had complications and we almost lost her after but now they are both home and fine...

My youngest DD had her baby girl Sophia Rose (8lbs 20in) by C section because the baby was in distress... we are going to be going home tomarrow... both are fine... I have been staying in the hospital with her because she is only 17.. SX have been on and off mostly weakness and only spilt coffee twice today..darn it they were good too...lol

I just want a hug from my guy take a shower and fall into my bed for a couple of hours...
Take care ya all.

[afrussopa]

Newbie

Good Morning!

I am new to limboland. I try to keep this brief. I live in Florida. In October I began having neck pain and numbness in arms and legs...which I attributed to the 4 herniated discs I have. It became progressively worse to the point that I was hospitalized while in Chicago. I developed ataxia, numbness, and weakness tot he point of being unable to stand. I was sent home with a walker once I was able to toilet myself (4 days), and told to follow up with a neurologist back home, as may of my test results were not back yet. The MRI showed white matter signalling along the ventricles, and the LP was essentially normal aside from a predominace of leukocytes. The neuro in florida felt that my symptoms are a conversion disorder from anxiety and depression. Didn't know that could cause objective findings like ankle clonus, hyperactive reflexes, and positive babinski....

I have steadily progressed...just have residual numbness. I had about two weeks where the horrible fatigue had lifted and I felt really good...until now. The past two weeks I have felt very dizzy. It has progressed to visual problems like double vision (I have such a headache from trying to keep my eyes straight), flashing lights especially when I move my eyes, and "shaky vision". Don't really know how else to describe this. It is like my eyes will shake for a couple of seconds when i move them...makes the dizziness worse.

This is most frustrating because I am a physician assistant and I don't have all the answers. I know I should probably go have another MRI or something, but it is my understanding that it can take years for the lesions to show up. I cannot afford to spend all the money I did (even with insurance) just to have another neuro not take me serioulsly. Fortunately the doctor I worked with is very understanding and concerned. He started me on a course of steroids yesterday. Wondering how long they take to "kick in".

Well, that is where I am at now. Thanks for listening.

[sunshine_elaine]

Just found this site tonight and discovered this thread. Looks like this is where I belong! Haven't gotten any kind of a diagnosis yet so don't know if I have MS or something else entirely.

Saw neurologist #1 back in the mid-90s for severe headaches. He did an MRI and an evoked potential then he or his office convienently lost the test results. Never occured to me back then to contact the hospital where the tests were run to find out the results.

I've been putting up with dizziness for years. Just figured it wasn't a big deal so never mentioned it to my family doctor. Then I started getting clumsy and seemed to trip over my own feet all the time. In July, had a major fall out of the bathtub and hit my head on the sink. Probably should have gotten checked out but didn't. Then in November, I was carrying my 1 year old granddaughter, lost my footing and nearly fell. Thank goodness, I fell against a wall instead of hitting the floor and my granddaughter was OK. That's when I realized I should see a doctor to find out what was going on.

On to neurologist #2. At the first visit, she said my reflexes were off and I had ataxic (sp?) gait--turns out I can't walk heel toe on a straight line. I'd flunk a drunk test for sure!! I told her about the dizziness, falling, pins and needles in my legs and feet, tiredness and forgetting words when talking. So far, I've had an EMG, MRI (w/and w/o contrast), MRA, ultrasound of my carotroid (sp?) arteries and a CT scan. The MRI showed some blockages of blood vessels hence the MRA, ultrasound and CT scan. But those came back clear. Other than the blocked blood vessels, everything else looked good. The last time I saw the neurologist and asked what this is...what's causing all my symptoms...she didn't have an answer. I asked what I should do about the tripping and she said I should buy a cane. Needless to say, I left that visit crying. I don't know what to do anymore. Should I go back to her and hope she figures something out? Should I go to another neurologist? Is this just a part of ageing (I'm 58)? Or should I just forget the whole thing and buy a cane?? I have no clue what to do next.

Sorry for this post being so long.

[limbo-lifer.73]

NOW WHAT DO I DO????

My first post on this thread, and already I'm whining (sorry). I was DX/unDX in 2008...info's in "Tell Us About Yourself" forum. Been doing the limbo..telling some people...then, un-telling them for ~5 years.

Here's the problem. MY INLAWS!!! They're coming to "visit". Oh, the joy!! They know nothing of this. The most they know is some kind of back injury, do to my former life as a runner. Since I saw them last, I've dropped ~50#'s, and now walk incredibly slowly...with a walking stick...afraid the wheeled walker will soon be again in my future. (Last time around it was for vertigo.)

Any-who, "dear" MIL loves to gossip...a lot...constantly...every waking moment....a real gossip monger...considers it an indoor sport. Carries with her an indescribable volume of "news" on anyone/place/thing (circle one) that happens to have been jogged in her memory. Chatter box doesn't come close to describing her.

I HATE IT!!! I don't want to be more fodder for her hobby/OCD obsession. I deliberately didn't tell her of my health "news" (her word) in order NOT to become a daily item on her newest Hit Parade, much less her "Oh, so caring" speculations. AAAUUURRGGGH!!!

Now what??? I'm trapped. My options are:
1) be conveniently out of town and/or planet.
2) Say I'm sick (which isn't a lie...).
3) Take her head off!!! Something in the form of a riot act ....only more diplomatic......with no machete involvement.

Some say it's up to me: my choice/my call. Some say "you've put off the inevitable long enough...come clean. They've (the In-laws) both been sick recently, so D-Day's already been put off a bit. Bottom line is I'm on borrowed time now!!!

Anyone else been in this horrid, sticky spot?

What do you do when you're FORCED to tell your story, and don't want too??? Could use some gentle feed-back here, please. My back's to the wall, and I'm out of options? Please help, I really do not want to leave the country.....

ME

[jumpinjiminy]

Limbo-lifer, how about an old hamstring injury with pain?

I'd read/write more except I've hit a crash. Just forced myself through 9 hours of solid homework. Going to hit the hammock.

[limbo-lifer.73]

Thanks for the shout-out, Jumpy!

Unfortunately, DMIL also has the ingratiating quality of being a consument snoop-aholic. Notices everything, and then asks more questions about it than the average 5 year old..... Actually, an average 5 year old would be less exhausting to have around. Like aforementioned 5 year old, they'll report on all they see to anyone who will listen...as well as a few who won't.

No really! I'm not making this up!

Anyhow, it's a sure bet she'll notice the hand rail along the sidewalk; the one up the front stairs; and the double railing down the basement stairs....the ones that the carpeting has been removed from, and replaced with non-skid 3M strips...

I suppose I could close the shower curtain, so she won't notice the 3 grab bars in the bathtub. (LOL). All in all, a tough sell for a hamstring injury.

This transient looming debacle is still indicative of the greater underlying problem! How to weasel out of telling "your story" when you just don't want to, regardless of the circumstances.

It's easy enough to do in casual encounters, as an off the cuff comeback will usually suffice. But in life long relationships of some import,....family, work, social settings....really... not so much. This is especially true when you know the audience is ignorant on the realities of LIMBOLAND. It's an already foregone conclusion they "just won't get it".

There are also the consequences and/or ramifications to be weighed. It's a perilous path we tread between rocks and hard spots. I'm hoping for an easy out here where none apparently exists. More than likely, one will become squished in the process.

UNLESS, OF COURSE, you fine folks have found a graceful, and yet delicate, way to scamper out of such a pickle?

Willing to consider any and all viable options!

Sorry so long. Thanks for wading through this one!

Me

[maitrimama]

My experience has been the least said the better (details are unnecessary and really none of her business) and stick to the truth (then you don't have to remember what story you told who).

Where does your husband stand on all this?

I am sending you prayers for strength and courage to move through these difficult days.

[jumpinjiminy]

Now that I'm recuperated a little better, hopefully, I can get a better post out.

MVM, thank you for your kindness. I didn't realize your MRI was negative too. What sort of conditions do positive EMGs indicate? I'm not very familiar with them. Let us know how your PT went if you get the chance. I've had a hard time juggling everything this last month, so along with feeling crummy, I decided to put that extra physical stuff on hold until things improve.

Miss Ginny, congrats on the grandbabies! I'm so glad to hear your daughters are home and well. Thanks for the fudge. I love fudge. I hope you got some good rest and snuggle time it. Both are good at making lemons taste like lemonade. It goes good with fudge, too.

Afrussope, wow. What an experience you've been through. {{{Hugs}}} It sound a lot like how mine started, only more severe. There were issues in the past, but it never got obvious until after going in a sauna. Following that, it evolved into something much like you're describing (only not as debilitating), and every week after that brought a new exacerbation. It went on for 2 months and then finally started slowing down. My CSF wasn't drawn until four months later after my sympathetic GP tried a dose pack or two when the vision problems started up again.

The sharks are hungry again. Can we feed your FL neuro to the them?! With those test results, I can see why you would question his decision. Red flag. If you've already got a majority of the testing done, really all that's left is to locate a good neuro to followup, yes?

The steroids kicked in within 12 to 24 hours for me. They worked right away to eliminate or lessen the symptoms, but once getting halfway through the pack, things started acting up again. It was an experience.

Welcome, and if you get a chance, let us know how everything is coming along.

Sunshine-Elaine, I'm so sorry you're having a hard time. While the neuro didn't sound like she was very helpful, they typically aren't the ones to help with functional issues. They usually diagnose, order tests, prescribe meds and write referrals to care providers that have the skills to help. I would see if she or your GP would write a referral for PT or OT to help you minimize the impact this is having in your everyday life.

Limbo-lifer, sorry if my comment came across sounding glib for what you're experiencing. I had no idea this has caused so many needed changes to your environment. From the post above, it didn't sound like anything more than a cane with a limp in slow motion. In that case, I agree with matrimama. We have neighbors like you describe and I like to keep things short and vague when she asks questions, otherwise the whole neighborhood knows our business along with every detail of it. Good luck with the visit. Let us know how it goes.

So far, I'm having good luck with the new med. It's only the third day, so we'll see.

[MarkLavelle]

Willing to consider any and all viable options!

I would be sorely tempted to overplay your problems, just for the entertainment value of the bogus gossip , but I can't figure out a way to do that without creating an opening for the whole pity thing....