Calling all limbo-landers limbo check in 4/3/2012

[minivanmama]

Good afternoon limbo island! It's a great time to visit the island. The sun is out and water is great. Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how your week has bee.

How are you doing/feeling this week? I hope everyone is feeling better this week.

Are there any doctor apts this week? Any test 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 found us and know you are not alone. I hope that you will keep posting. Just know that we are always here for you.

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


Hi everyone I hope that everyone is doing ok. I hope to see everyone on the island soon. Just keep hanging in there and know that i am thinking of you.

My kids are on spring break this week. So we have been haveing fun. We have went bowling,to the mall to meet my BFF and to the park. Still more to come with people comeing in to town at the end of the week.

Today is rest day. I have a major ear and sinus infection. I am on antibiotics and prednisone. so resting so i can get back to life in the morning.

So i am getting back to bed. My kids are being a big help today. Lots of (((hugs))) to everyone.

[lynnepynne]

Oh no!!!

Hi Minivanmama! I am so sorry to hear about the ear infection and sinus infection. Seriously, that is some serious crapola! I hope you feel better soon so you can enjoy the family time.
My kids are on spring break too and I LOVE IT. (especially the not getting up early part) so get better soon!!

Hi everyone! Things are going kinda yucky again. Having a raging time with my trigeminal neuralgia and it. is. ghastly. Also some other of the usual crap is getting worse (like the running to the bathroom all the time, my walking is a little wonky and my hand is Mr. Mystery again...) And again, blast from the (near) past: exhaustion.

Today while at work we had a supplier in for a meeting and I quite literally fell asleep while he was talking. To me.

I could hear his voice, and I WAS listening but my eyes were so heavy and I could not get myself to wake up. I apologized, excused myself and took a nap in my office under my desk, on the floor for 40 mins. (and I dont mean I dozed. I was out for the count) It was absolutely ridiculous!!!

So anyhow, things are not so great right now, but whaddya gonna do?

Hope everyone is doing well and hanging in there!
Lynne

[singer]

TIRED FROM DOIN D 'LIMBO'

HI ALL
so many years of 'maybe ms' now we see it, now we don't--- cant be ms--- youre too 'old'---- to me : ok i guve up what ever 'it' is- i dont like it

sending u all many happy spring days 2 come and blessings for a short stay on the 'island' of misfits- till then laugh, love and live to the max.

[netster]

Spouse of a limbo-lander

Howdy. I stumbled across this website while researching. I'm not the limbo-lander, however my wife is. She's in her early 40's.

At her last MS neuro appointment (February), she was told that she's in limbo. At the time, I had no idea that “limbo” was an actual slang term used.

Her symptoms sound very familiar to many of the experiences shared by various people here on the forum. She started off with balance issues about 18 months ago coupled with upper back/neck pain. And she was always complaining about being hot (still an issue today). After a few months of no relief, she finally went to spinal specialist for the pain. He ordered a spine/neck MRI. Her results showed that she has cervical stenosis at C5/C6 (if I remember correctly). At that time he examined her reflexes and tested her balance. She couldn’t walk a straight line toe-to-toe (still can’t), and her right leg reflexes were very sporadic (still are). Based on his opinion, she might benefit from surgery, but he was convinced that something else was causing the problems. We were very concerned.

We went to another surgeon for a second opinion. The second doctor said that stenosis was not the cause of her condition and he referred her to a neurologist. The neurologist ordered an MRI, non-contrast if I remember correctly. That was negative for lesions, tumors, etc. The bottom line from that guy was that something was going on and everything else was ruled out via blood-work, MRI, etc., so he referred her to an MS specialist in PA.

So we go to Philadelphia and things get interesting. The MS neuro orders a contrast MRI and spinal tap. The contrast MRI shows 4 lesions, where 2 are classified as suspicious for MS. There were also 2 O-bands in her fluid, but I don’t think that mean anything (not sure). To make this a shorter story, here’s what we know:

1) Baclofen 4 times a day (not sure of the dosage) for spasticity
2) 4 lesions, 2 suspcious for MS (no change from the contrast MRI done a year ago)
3) 2 O-bands in the fluid last year
4) Has RAPD affecting left eye
5) Balance issues
6) Heat intolerance
7) Buzzing ear at times
8) Vertigo comes and goes

Someone might ask, so I’ll just say that we didn’t have VEPs performed because our insurance didn’t cover most of the cost. However, at a recent routine eye exam, the doctor saw something in her left eye and referred her to a retinal specialist. The retinal specialist said that the problem is with the optic nerve and believes it’s optic neuropathy. Now she needs to be seen by an optical neurologist at Wills Eye.

The thing that I’ve noticed most recently is that she seems to be having more right leg spasms while sleeping. I can’t tell if it’s been there all the while or I’m just paying closer attention and reading into things. She says the spasms are getting more frequent during the day. Hard to tell for sure from my perspective. If it’s true, I’m a little discouraged that things could be moving along more quickly than I would have expected.

I hope this makes sense.

[JerryD]

Hi netster,
Welcome to the wonderful world of unanswered questions !
We are on the 'island of Misfit Toys' ! I also saw a guy at U of Penn ( Dr.Clyde Markowitz, director of the MS dept. ) and I saw the top retina guy at Wills Eye.
Both gave me their ' well wishes'. Encouragement, no treatments.
The reason I am weighing in here is because I am of the firm belief that you need to be very careful of the advise you take as 'gospel', even mine. You need to be the one in charge. In my 4 years with this MonSter, I have seen all kinds of 'neuro this and that'. And remember 'everyone is a nail to a hammer'.
I suggest you and your wife heed the nutrition advice on this site. Put yourselves on the list of vitamins and supplements and dietary changes. Taken judiciously, all non-toxic. Get your hormone levels checked, including vitamin D. And do what needs to be done to normalize them. You will almost assuredly need to push your PCP to test these things. The labs do these tests pretty routinely, most MD's don't ask for all they should !
Most importantly, DON'T DESPAIR . We ( the MSer's on this site ) are here to encourage you.
Good Luck !

[Miss Ginny]

minivanmama=I hope your sinus infection clears up soon hon. So glad you are having fun with your kids...Wow! bowling I have never been.

lynnepynne= I am sorry things have been going so badly for you...exhaustion is the worst... have you had your iron checked lately that can make you beyond exhausted when it drops hon.

singer= hey hon, happy spring blessings to you too... and never give up just get mad and have the cutest cabanna boy bring a drink or two...maybe three...lol

nester= Welcome to MSWorld...glad you found us ... so sorry all this has been happening to your dear wife ... yes it is pretty much chase this dx and then another and another... but I am so glad you are there for her and accept what is going on...my dear hubby is very supportive and understanding and believe me when the docs don't have an answer to what seems like a simple question a hug from him makes me feel loved and accepted and that goes along way...

I have been having a pretty bad flare and dh and I were like do we go to ER or not... I waited and left slurred message on office and neuro called me back herself... went in to see her that day... she spent over an hour talking to me and I got a dx... Not MS... but a really rare disorder called Familia Hemiplegic Poroxysmal Episodic Migraine...it has all the sx of MS but no demylenation... weird huh? Only 3 percent of the pop have it... guess I was a "puzzle" after all.lol
I hope I can still post here cause I consider ya all friends and like to give you support...
Well for short it is FHM but I think of it as "Funny Humerous Memories" cause of all the times DH and I have laughed and joked during a flare up.

[mjan]

Howdy. I stumbled across this website while researching. I'm not the limbo-lander, however my wife is. She's in her early 40's.

At her last MS neuro appointment (February), she was told that she's in limbo. At the time, I had no idea that “limbo” was an actual slang term used.

Her symptoms sound very familiar to many of the experiences shared by various people here on the forum. She started off with balance issues about 18 months ago coupled with upper back/neck pain. And she was always complaining about being hot (still an issue today). After a few months of no relief, she finally went to spinal specialist for the pain. He ordered a spine/neck MRI. Her results showed that she has cervical stenosis at C5/C6 (if I remember correctly). At that time he examined her reflexes and tested her balance. She couldn’t walk a straight line toe-to-toe (still can’t), and her right leg reflexes were very sporadic (still are). Based on his opinion, she might benefit from surgery, but he was convinced that something else was causing the problems. We were very concerned.

We went to another surgeon for a second opinion. The second doctor said that stenosis was not the cause of her condition and he referred her to a neurologist. The neurologist ordered an MRI, non-contrast if I remember correctly. That was negative for lesions, tumors, etc. The bottom line from that guy was that something was going on and everything else was ruled out via blood-work, MRI, etc., so he referred her to an MS specialist in PA.

So we go to Philadelphia and things get interesting. The MS neuro orders a contrast MRI and spinal tap. The contrast MRI shows 4 lesions, where 2 are classified as suspicious for MS. There were also 2 O-bands in her fluid, but I don’t think that mean anything (not sure). To make this a shorter story, here’s what we know:

1) Baclofen 4 times a day (not sure of the dosage) for spasticity
2) 4 lesions, 2 suspcious for MS (no change from the contrast MRI done a year ago)
3) 2 O-bands in the fluid last year
4) Has RAPD affecting left eye
5) Balance issues
6) Heat intolerance
7) Buzzing ear at times
8) Vertigo comes and goes

Someone might ask, so I’ll just say that we didn’t have VEPs performed because our insurance didn’t cover most of the cost. However, at a recent routine eye exam, the doctor saw something in her left eye and referred her to a retinal specialist. The retinal specialist said that the problem is with the optic nerve and believes it’s optic neuropathy. Now she needs to be seen by an optical neurologist at Wills Eye.

The thing that I’ve noticed most recently is that she seems to be having more right leg spasms while sleeping. I can’t tell if it’s been there all the while or I’m just paying closer attention and reading into things. She says the spasms are getting more frequent during the day. Hard to tell for sure from my perspective. If it’s true, I’m a little discouraged that things could be moving along more quickly than I would have expected.

I hope this makes sense.

Welcome and sorry for what you and your wife are going through. I included the McDonald criteria (think its allowed) for diagnosing MS.

Sure sounds like your wife is probable MS. BUT its sometimes good to be in limbo so you do not miss any other diseases/disorders. Docs will want to rule out before certainly saying its MS.

I was in limbo for years. It was very frustrating, but then it got my other diagnoses, long before FINALLY my brain lesions were the classic oval MS ones. I had lots of lesions..still do. VERY slow progression too, but lots of annoying symptoms.

Also try not to worry as much with seeing new symptoms. That does not necessarily mean MS is progressing. Its probably just manifesting its ugly head.

Some have few to no symptoms, some have many little annoying ones. Some have huge changes that come on acutely. Its just the nature of MS not to be as consistent as we like. GOOD news is that they are learning how the brain tries to re-wire and heal itself. AND MS tends to be remitting-relapsing more than progressive. We're here for you as well. Hope your wife joins too. There is a caretaker chat also on this site. Hope you stay with us.. this is one of the most supportive/informative places to be.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

Warmly, Jan

[michele1975]

In limbo...for sure!

Hi all! I found this from the chat rooms on this site, and boy am I glad someone sent me the link.
Here is my history:
I am a 36 year old mom of 2 little girls
8 Years ago, dx with Meniers (vertigo and tininitus and hearing loss)
2 years ago, mild tingling and numbness in left side of body
went to neuro, who sent me to MS neuro.
She did:
Repeat MRI (showed lesions), not sure how many
blood tests, and spinal.
I was done being poked so I refused more treatment.
about 6 months ago, I was experiencing severe exahustion, and dizziness, more like a drunk feeling, off balance and weekness.
Back to MS neuro. She repeated MRI found more lesions, but she says they are "too non specific" to get a officail dx of MS did more blood work ect.
I faild several tests while in the office, like the balance (toe to heal test) and the touch nose, touch finger test...so agrivating.
I have several weeks worth of testing ahead of me such as a EMG and a certain test to check heat and cold tollerance? and I am going out of my mind, just wanting a DX so I can start a treatment and know I am not going crazy feeling this way.

Whheeww..sorry that got long. I hope that someone can relate to what I am going thru and keep me on track, I am ready to give up again. SIGH..
Michele

[minivanmama]

Moderators can you lock this thread so we can post on the new thread. Thank you so much.


michele 1975 - Welcome to the island. I am glad that you found us. I can understand how you are feeling. Just know you are not crazy. We all know how it feels.

I am sorry that you are haveing such a hard time getting answers. I hope the next round of test will get you some answers.

Keep hanging in there and know you are not alone as you look for answers. Lots of (((hugs)))

Miss Ginny - Congrats on getting some answers. That is great and i hope you get to feeling better soon. Do keep us posted when you can and we would love the support.

Thank you for thinking of me. I am feeling all better. Lots of (((hugs)))


Nester - Welcome to the island. I am sorry that your wife and you are looking for answers. It is frustrating to be here and i am glad that you found us.

Keep hanging in there and i hope that she will get answers soon. I think Mjan said it best and know that we are always here for you.

Keep on posting and i hope to hear form you and your wife. Lots of (((hugs))) to both of you.

Singer - Welcome to the island. I sorry that you are getting the run around and no answers. It is so frustrating.

Keep hanging in there and keep on posting. Lots of (((hugs)))


lynnepynne - I hope you are feeling better. Thank you for thinking of me. I am feeling better. Love spring break and glad you had your kids home and love it.

I hope your week is better this week and you are feeling better. Lots of (((hugs)))



Ok time to start the new thread. Hope to see you all on the island soon.