Calling all limbo-landers! Limbo check in for 6/12/2012

[minivanmama]

Good evening limbo island! what a great time to come and visit the island. The sun is out and the breeze is blowing. So grab your cabana boy or girl and order something to eat and drink. Grab your hammock and sit down and tell us how your week has been.

How are you doing/feeling this week? I hope the week has been good and everybody is feeling better.

Any doctor appointments this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Anyone need to scream?

Island news this week - welcome to our new a limbo islanders. I'm glad you found us and know you are not alone as you were looking for answers.

If you are diagnosed this is a place for you. Come and tell us your story the island is waiting.

I am posting this from my phone. We are out of town and up in charlotte this week for vacation.

Had a busy week last week so I hope to catch up with everybody this week. Lots of (((hugs))) everyone and talk to you soon.

[MandaPanda2888]

still waiting...

I got my LP today so my back hurts pretty bad. Im also getting alot of blood work done this week to test for lots of stuff including non specific tests for lupus and lyme as well of course as MS. Going out of town on friday for a week.

[lusciousleaves]

I have crash. Cleaned the whole house from top to bottom yesterday for the first time in probably 3 years, with no help. I'm tired, but feel so accomplished. Hoping to snap back to it tomorrow and hit the outside. It's going to be nice and cool. Perfect weather for working outdoors.

Manda, sorry your back is hurting. Funny, I don't remember my back hurting after the procedure. Is my memory fuzzy?

MVM, enjoy your vacation. It wounds wonderful.

JayEm, sorry to not respond to your last post, but I've either been working my tushy off or sleeping. Now - off to sleep again!

[tambrown]

I had neuro Appt Monday my legs are so weak I just don't know what to think but he said it's stress.

Makes me feel crazy sometimes. I really want answers and some relief. From pain and the unknown reasons for all the weird sx.

I was a gymnast for 15yrs my legs have always been muscuar. Now I need a cane it does help but why are my legs an arms failing me now?

Sorry Im venting and not enjoying my cabana boy serving me pina coladas.Thanks for listening. I hope everyone's week is wonderfully blessed Tammy.


"

[poohb3ar]

bless your tambrown

it is so frustrating when you can't do the things you loved and brought you pleasure.

i ran before MS took over my legs. been using just a cane for 10 yrs. when i'm lucky. sometimes it's w/cs for me.

it's so frustrating when i trip over my own feet, or my leg just crumples even while holding cane.
i've been known to stomp my cane on the ground a few times what i'd really like to do is throw it and run away.

but, at least we've got the memories in our heads.
it must be awful for those who don't even have that to cherish.

hang in there! some days will be better.

take care and God bless you!

[JayEm]

I have crash. Cleaned the whole house from top to bottom yesterday for the first time in probably 3 years, with no help. I'm tired, but feel so accomplished. Hoping to snap back to it tomorrow and hit the outside. It's going to be nice and cool. Perfect weather for working outdoors.

I consider it a pretty good day if I can manage to clean part of one room with help! I can't even imagine being able to get through the whole house.

Tambrown and Poohb3ar, it's nice to know I'm not the only one mourning my former athletic self. I bicycled and taught self defense classes. Between the two of those, and a lot of walking as well, I still have well-defined leg muscles. They just don't *work* a lot of the time. I use a cane pretty much any time I leave the house, and use a wheelchair if I'm going to be out for a while.

I hate when doctors try to tell us it's "just stress." Believe me, when I was stressed before I got sick, my response was to be really physical. It still is, when I can manage it, but I've learned to take time to think about my route before I go out for a walk, and I've learned to walk more slowly than my mental impulse would have me walk.

Not much going on on the medical front for me, until my next EMG on the 25th. But I'm graduating to a higher vial in my allergy shots, and the nurse said I might start seeing some improvement in my allergies with this one. I'm definitely crossing my fingers for that! Maybe it will mean I can get away with eating more fruit this summer.

I hope everyone can get some peace and have some luck in getting diagnosed. And also enjoy life in between appointments.

[mtfbwy72]

Hi all, I'm Stacy...had my LP on Monday and my back is still a little sore but it was bothering me before so I don't think it's the LP anymore. Had a Cspine MRI yesterday and blood owrk last week so I am all done with my initial tests and go to the neuro on the 26th for the results. I'm kind hoping I can get info outta them over the phone before then.

I was doing good but I am back to feeling weak on my left side and tired. I need to get walking again. That always helps my energy but it's so hot and DS is ome for the summer so I'll be walking at night after hubby gets home from work.

Thanks for having this limbo thread. Now I don't feel so lonely.

[JayEm]

Weird. I thought I had replied to this thread earlier today. I'll wait to see if it shows up, rather than repeat what I said before.

I was just coming on to post because I was sorting through medical papers so I could send in receipts for our health care flex spending account. I glanced at one of my MRI reports and wondered what it meant when it said that my brainstem was "prominent," so I looked it up on Google.

And that led me to something I'd not heard mentioned before: neuromyelitis optica, which apparently shares a *lot* of symptoms with MS, but where the lesions are different (mostly in the spine, rather than the brain, for instance, and not in the same places in the brain).

It's really rare, which is probably why it hadn't been brought up by my doctors, and why I hadn't run across the term before.

I've never had a spinal MRI, and I think I'm going to advocate for one at my next neurology appointment.

Anyhow, it was such an a-ha! kind of moment, and I wanted to share it with someone (without stressing out my partner, who tends to worry about things more than she needs to!).

I don't know that it's what I have, but it's something that hasn't been tested for, so I'd like to have it ruled out!

[lusciousleaves]

NMO, Redwings is quite familiar with this. Don't they do a blood test for NMO, or is it a lumbar puncture test? I was thinking blood test, where they look for a particular antibody.

JayEm, it was an awesome day, and one I've been paying for dearly ever since. Extreme fatigue, like the kind that makes you sleep for 12 hours a day just to feel somewhat awake, but the rest of the day is spent feeling like a zombie has eaten your brains. Yep. That's been my week ever since. It's improving. I did cook dinner tonight, a very simple one. Now I've got a nice case of blurred vision that hasn't been this bad since last spring. Sigh.

At least I get to spend those mentally absent times in a clean house with clean clothes and a stocked fridge!

MTFBW, welcome. Where I had my MRIs done, they gave me DVDs of them on the way out the door. It was interesting to look at them, even though I didn't know what I was looking at before seeing the neuro. The waiting is the hardest part. Ten days seems like forever.

Tambrown, I was a gymnast, too. And I love a hardcore workout, strength training and interval training are my faves. They make me feel so pumped up. It's so frustrating when your workout is reduced to a pedometer and how many steps in a day you get in doing housework.

Well, I didn't get to garden while it was cool. Maybe tomorrow.

[JayEm]

At least I get to spend those mentally absent times in a clean house with clean clothes and a stocked fridge!

There is that. I'm lucky with cooking, because not only is my partner willing to do prep work, she *likes* it. So I can usually get her to peel and chop all of the veggies for me, which means that I can often manage to make dinner without paying for it (much). Even better is when we can use the crock pot, so I can make dinner in the morning, when I have more energy.

I wish my neuro had been willing to look at the DVDs of my MRIs and explain what I was seeing. As I explained to the people who asked me about the results, I can confirm that I have a brain, and that's about it. (The shots where you can see the outside of my face and the inside of my head are really cool to me.)


Welcome, Stacy. This thread is great. The site in general is good for realizing that I'm not the only one coping with the things I cope with, and the thread is a step beyond that, where I can chat with other people who are dealing with being in limbo.

I'm sorry you're back to feeling weak and tired. I hope it lets up soon!

[Chicken Mama]

Hello Everyone.

My name is Chicken Mama, and I am in limbo. My story is in the Introductions section, so I'll spare you all of that junk.

I have been hanging around here for about six months, (mostly lurking) and I've been avoiding this thread because I don't want to be in limbo.

When I found out I had lesions on my brain that were 'non-specific' and that I would have another MRI in six months to check the progress, I just didn't want to focus on being 'in limbo' for six months. I wanted to go on and live my life NOT WAITING for something to happen.

However... it's all I've been thinking about because my symptoms have been in my face and seeming to get worse all of these six months.

So I just had the follow-up MRI and I have two new lesions, but two have disappeared. Based on the fact that I've been having more problems this six months with the lower half of my body, Doc is sending me to get the Cervical MRI done again. Previously, no lesions found on my spine, and no O-bands in the fluid. I'm also going to get cognitive testing done.

I guess I just need to rant a little bit with people who understand.

I DON'T WANT TO HAVE MS! What I want is closure.

We've ruled out the MS mimickers. The Doc says that the 15-20 lesions on the MRI are 'non-specific', but demyelination, nonetheless. He was thinking that the demyelination was a 'one-time' event from a possible brain infection, but the two new lesions indicate it's on-going...not static.

So...I have all of these horrible symptoms, that are caused from the same thing those who have been diagnosed with MS have, yet I'm unclassified.

That doesn't mean I WANT MS!!! I want closure. I want to find out what it is, so I can focus, regroup, make plans and move on down the road toward treating-whatever it is-.

In the meantime, I'm reading all I can, and I'm learning all I can about MS. Not because I WANT it, it's because I have so many of the same symptoms. I've started taking some supplements, and I'm mulling over changing my diet.

If it sounds like I want MS, it's because I have 15-20 holes in my brain, and no one seems to be taking me seriously because I don't have a freakin' name for it! Even though, I might feel every bit as bad, and have the same symptoms as someone with the freakin' diagnosis!

I talk like Rain Man half the time! I can't express myself verbally, and that is SO frustrating. I'm so fatigued that I spend half my days reclining, and that makes me feel useless and pointless. My legs hurt all the time, and I'm having balance issues, and that is SO SCARY!

No one understands, including my extended family who, I think, are just thinking I am lazy or not trying hard enough, or avoiding responsibility. That hurts most of all. I have always been someone who liked to stay busy!

Thankfully, my hubby is supportive. It's difficult not to get self-centered, too, and I don't like that. I'm sorry if this post is focused on myself. I just needed to get it off my chest, because it PISSES ME OFF when people imply that I WANT MS!

I guess I need to participate more. I'm so frustrated.

Thank you for allowing me to vent.

[stalo]

Chicken Mama, I am in the same boat you are. I have MANY lesions in my brain that are from some "demeylinating" something, but no one will say the nasty word. I have had my initial sx outbreak 1 1/2 yrs ago, and those sx remain today. I have periodic boughts of dizziness & fatigue, but haven't had the second major sx outbreak & haven't had any new lesions show up on the MRI. So...I wait. The sx are in my face every day, I have to take meds to try & control them, & try not to think about the ugly MonSter this might be. So, I hear you with your frustration & not wanting it to be MS but wanting validation that there is something wrong with me & I can do something about it.

[JayEm]

I don't want MS, I just want answers for whatever it is that has slowly robbed me of my life. I try not to think that way--I have many good things in my life, and focusing on all of the things I've lost will just make me feel depressed. But it's there. I want those things, not some illness.

Any time someone asks about secondary gains (meaning benefits from faking being sick), I wind up getting so depressed, because it makes me think about what I actually want, which is to be healthy.

I mean, I had already had to stop working and was getting SSI for several years before MS even occurred to me as a possibility.

I was originally vaguely diagnosed with "Well, it might be chronic fatigue or fibromyalgia" without the doctors testing for anything but diabetes or thyroid problems: No tests for lupus, lyme, not even really for whether I was anemic.

But until it was clear that whatever I have is progressive, and when I started to think that maybe the studies showing reduced pain tolerance with fibromyalgia were true for people who have fibro, and that the fact that my pain tolerance is fairly high might mean I don't have it.... And then when I realized that things like double vision aren't actually a symptom of fibro...

Anyhow. I don't want MS. I want an accurate diagnosis.

Sorry for the rant.

[Chicken Mama]

Stalo and JayEm. It's comforting to know that someone understands the frustration of feeling so bad, and having so many ugly and weird symptoms and not knowing for sure what it is.

I'm sorry you both have had to go so long living with these ugly things and without having a diagnosis.

Hoping you can get some resolve soon! Thanks for commiserating.

[thewildrose]

Hello All - more rant

I am so happy to have found you all - and YES, chickenmama - I SO understand where you are at.

I have had cognitive probs, pain, a lesion that disappeared, fatigue - you name it since 2001. Now hit with much more severe mobility, fatigue, pain, cognitive, speech problems and tremors - MRI of brain clear - MRI of c-spine inflamed - been tested for everything from vitamin deficiencies to lymes to hvi - negative on all.

I had my first LP on Wednesday. I have the new MS blood test next Tuesday and my appt isn't until 6/28 with the neuro to figure this all out.

I haven't been able to work since April - my FMLA runs out end of June - my dr has already told me they are not releasing me to go back. I don't know how I'd do it anyway, even part time. Can't drive - had to give up my side business yesterday

I have no choice but to apply for disability at the end of the month just to be able to pay my bills - will lose my health coverage doing this.

And yet, every day I am still trying to figure out what it is that has changed my whole life around to this few hours a day of just trying to exist. I accidentally let a 'oh thank goodness' slip out when the neuro said if my last mri showed anything, he could dx me from all my sx over the years. He just looked at me incredulous and said - I don't 'want' you to have MS.

Well, you know - I don't WANT to have MS either - but the problem is - I have had something plagueing me for 12 years and it's not anything else any of you drs have tested me for, so it would be nice if you could admit what is in front of your face so I can at least feel some kind of reasoning for having to apply for disability and close my business and consider a day I can cook soup for my husband, or make it up and down the stairs without crawling, a really good day.

Ok - rant over - hi everyone