Calling all limbolanders-limbo check in 9/28/2010

[minivanmama]

Good morning 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 the week has been good and that everyone is feeling better.

Are there any doctors appts coming up? 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 this week - 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.

I am off to start my day. (((((hugs))))) to all and take care everyone. Enjoy the island.

[minivanmama]

Good night limbo island and sweet dreams. (((((HUGS))))) to everyone. I hope to see everyone soon.

Let see what is new with me. I have a neuro apt on oct the 7th and i don't want to go. I am prying that i don't get the same talk that i always get.

[zuzu20]

hi all. I am done with the poking and prodding for now I hope. But I still have three visits out to the hospital for physio next week to see how strong I really am. (not very) O and I think I have an eye evoked vision exam but that's in two weeks. I am waiting to here about a stimulation evoked test( don't know what it's called) and a field vision test. whew at least the worst of the tests are over. I think....

This week I have nothing and I am staying put and putting my feet up. Though I can hardly wait till physio starts up I really want to get my strength back. Every time I try and excersise I get so week after and takes days to recover. I have never had this experience with excersise before and I always looked forward to my workouts. Now I just get weaker it seams.

My dr said to lay off the Tylenol I am at my wits end now because my legs are in such pain; However the Tylenol was causing me to have more headaches since I have been off them I haven't had one for two weeks and that's a record.

But my poor legs are suffering and I am going crazy not being able to get out and about much. I can't believe that taking daily dose of tylenol was causing the headaches. I still have the cog fog but at least my headaches are gone. My dr said it was like being addicted to caffeine the same idea.

I found a great new drink I usually like my rum and coke but I wanted something different I found cranberry juice and peach Schnapps O yummy yummy. reminds me of summer. This is my new drink of the week. So I am sitting by pool side with my feet in the water reading my new book and drinking my cranberry and peach. Summer really never left after all.

[zuzu20]

PS...

PS; sorry me again I have a question about RLS restless leg syndrome I know I don't get out for much excersise as I used to but lately my legs won't let me sleep. They burn, itch tingle and muscle cramps.

It's driving me crazy It will go all night then it stops around 5 or so then my legs will totally calm down and I can fall a sleep.

Is this a common thing? I don't know if its MS related or just lack of excersie.

[Shashi]

Hi all,

Had an appointment with the NP at my neurologist's office, which I reported on another thread on this board. I'm still waiting to hear when the brain MRI, LP, and VEP will be scheduled. I kind of doubt any of those tests will show anything; however, having said that, the weird plethora of symptoms that I'm having have to be leading somewhere eventually. It's just a matter of when and where I'll arrive at a diagnosis.

My brain really feels like it's malfunctioning right now. I keep having weird seizure-things. Just now tonight, I've had three of them. I don't know if they really are seizures, but I can kind of feel them coming on, then I kind of stiffen up, my eyelids start twitching and my usual tremors get worse for about 15-20 seconds. I don't lose consciousness, but I'm also kind of "frozen" until whatever it is passes and then a bit dazed for a minute or two. But I'm not getting the pretty color fireworks that I had with this thing last week. At least it was entertaining.

So anyway, I pray we all get answers soon. Being in limbo is the pits!

Hugs,

Lisa

[minivanmama]

Good morning limbo island.

Zuzu20 - Good to see you. I am glad that you have a brak from testing the next few weeks. I hope the PT will help you get stronger.

I am sorry that you legs are botthering you. I have problems with my right leg. I hope that you can find away to help your legs feel better. I am not sure about the RLS. I know a lot of people have problems with there legs burning and muscle cramps. I hope this helps. It the problem is keeping you awake then i would call your doctor and ask what to do. You can also ask the person who helps you at the hospital.

Enjoy the time off and putting your feet up. I hope as you get stronger that you can start to excersise. Enjoy your drink by the pool and enjoy the summer weather as long as you can. Lots of (((((hugs)))))

Shashi - Good to see you. I am so glad that you went to see the NP. I know how hard that was. I hope you hear from the office soon and can get all your test done soon. I know waiting is so hard to do.

I am praying that you will get answer soon. After 4 years i know you are ready to get answers. What did the np say about the seizure-thing that is going on? I know that can be hard to deal with. I pray that they can do something about them.

Yes there will be answers. I pray that you get answrs sooner then later. Yes being in limbo is the pits. I pray that you get off the island and get to feeling better. Keep us posted on how you are doing and when your test are. Remember that the we are always here for you.

Lots of (((((hugs)))))
Ava


Have a good day limbo island. I am off to start my day. I will check back in later. Lots of (((((hugs))))) everyone.

[Cmiracle]

Hello "limbolanders" I am in the process of moving this weekend. Fun! Fun! I am also in the process of finding a new neurologist after the disappointing visit I had last week! There is alot going on right now and I have been looking online for new neurologists. It looks like I will be picking one from the local university, since they have over 10 to pick from. Some are pediatric neurologists that also specialize in MS. So I have some research to do.
Hope everyone is having a good week. Think positive!

[minivanmama]

Cmiracle - Good to see you. I am glad that you are looking for a new neuro. You can look on a web site called ms neuro ratings. There is some good info there to help you look for neuros. I hope you find one soon.

I know moveing is hard. Don't overdo it and take care of yourself. Have a good week and lots of (((((hugs)))))


Good night limbo island and sweet dreams. Lots of ((((hugs)))). I will check on everyone soon.

[felicheeks]

NO LONGER IN MS LIMBO LAND

JUST FOUND OUT THIS WEEK I DO NOT HAVE MS...I DO HAVE A NEUROLOGICAL BRAIN DISEASE, THEY JUST DON'T KNO WHAT IT IS...MORE TESTING...THEY SAY GENETIC TESTING...MORE WAITING SO I AM STILL IN LIMBO LAND...

[Shashi]

Okay, I got the call this morning. My MRI and VEP are scheduled for Friday, Oct. 8 at 2 p.m. They'll have to do the VEP first, because I will be basically knocked out on Xanex for the MRI. (I'm highly claustrophobic in that stupid tube!)

One more week, but I doubt I get any answers.

Getting down about leg problems

PS; sorry me again I have a question about RLS restless leg syndrome I know I don't get out for much excersise as I used to but lately my legs won't let me sleep. They burn, itch tingle and muscle cramps.

It's driving me crazy It will go all night then it stops around 5 or so then my legs will totally calm down and I can fall a sleep.

Is this a common thing? I don't know if its MS related or just lack of excersie.

Well you have been chosen to get one of my rant lectures about leg pain tonight. Since I'm up let's start with why: my legs bother me so I can't sleep. Since I was very much younger my legs have given me all kinds of trouble of just about every type except they have not fallen off.

Currently my left thigh area has a new symptom: a tendency for a huge cramp to develop in the back thigh muscle only. Most other muscles only cramp occasionaly at this point. (not true in past). Before for years and years I had total numbness in front of left thigh combined with tingling and pain. And before that I had a feeling like a leukemia pain right in the center of the same left thigh bone. That pain had caused me to consult a Initiated Tibetan Tantric master to help and he did. It was quite interesting to sit for days with him and wife and 6 children and do tantric breathing exercises which are very loud and sound like sex happening. Helped me live thru that. He had lived through almost having to have his leg amputated by these breathing exercises and burning the puss out of the lhorrible leg/bone wound with a magnifying glass in the sun. But that's another story. Yet I felt at the time that he moved the "thing" out of the center of my thigh bone up into my body cavity were it was I thought the cause of my left ovary being removed. Needless to say, that was in the hippy days when I thought all kinds of weird things.

I had problems with my legs as a child and was called spaz. The pain was so bad at night that as a little kid all I could think was "help help mommy" and lay there in torture all night with leg pain of the weirdest and most all encompassing type. I thought I had polio that got over looked. Or leukemia as other family members did. From day one I was accused of exaggerating or malingering with my pains and problems. I was just a kid and the pain was overwhelming, malignant and trauma causing. I developed all kinds of symptoms like my hair falling out; my fingernails turning to weird lines; severe anemia; stygmatism (my mother used to say: "don't make those twisted faces Julia or your face will one day remain frozen in that twisted position". They thought I was doing this on purpose. There are photos of me with my face all screwed up. What I remember was that it hurt. I already was becoming way to used to severe pain that was ignored by others. way way to used to it.

I went away to college finally at BYU in Utah....far away from the painful childhood in Ohio. I began to have severe hideous migraines. These were so bad that I could not even move one inch or I wailed in agony. It felt like death. Doctors said there was nothing wrong. People began to tell me that I was doing the thing where you roll your eyes back without knowing it and stare into space. I was constantly ill and almost dyed of strep disease. Often at school I felt I was going to feint and several times did. Nobody noticed and everyone remembers me as a healthy normal kid. They had no idea. I could hardly walk half of the time. It was a living hell. then the bladder stuff....the weirdest bladder problem i ever heard of.

Then finally after having all sorts of episodes where my legs "went out", "stopped working" and having to have in home support cause I was like partially paralyzed. Only one doctor helped: this angel from New York who practices(d) in Santa Cruz, CA. He saved me for years giving me light doses of prednisone and valium. After I left him things got worse. So that in 2001 I had the huge attack of optical neuritis etc. and with monumental difficulty with walking. I tied ropes to my legs and arms and used one or the other to move the leg most unable to move or arm least able to move. I could barely move my legs although I could stand up and struggle forward with my feet utterly dragging on the ground. By then I was homeless thanks to some malpractice and cynical social workers and landlords. I had a homeless japanese/hawaiian american boyfreind who liked me cause he said I walked like a property crippled Japanese woman. I sort of drag step. I tried going to the mental health drop in center hang out in Santa Cruz and everybody thought my blindness and leg not working problem was a new way for me to get attention. I lost bladder control there and was screamed down by the director and kicked out for the day.

In about 2007 I still had the total damage from the optical neuritis/bell's palsy/trigeminal neuralgia attack when my left leg suddenly went out totally. Doctors did not believe me because I showed none of the normal symptoms of a leg injury but just couldn't use the leg. I had just started on my master's degree at Humboldt State and suddenly unable to walk hardly at all. I drug around on crutches and several times campus police were called on me for "being a homeless woman sitting in the lounge to forestry department". This was the only place I could walk into on my crutches and dead leg etc.

I now know some tricks about getting thru these problems cause I tested all kinds of solutions to the leg and vison problems and studied them too by research of MS. But somebody on here wanted to stomp on me by saying I do not have diagnosis of MS> Well let me say one thing about that: I am expert of avoiding titles, groups, political ideas; religions and diagnosis I have to be titled with. I will title myself and do not look only to the AMA doctors for cures and dialogue and diagnosis. I leave myself open to unknown things for a disease that has no real cure and no real knowledge of what it is or where it comes from.

[minivanmama]

Good morning limbo island.

felicheeks - Good to see you. I am sorry that you have more testing to do. I know that you are worried.

Just take a deep breath and know that we are here for you anytime. Keep on posting so we know how you are doing. Lots of ((((((hugs))))))

Just know that even though you are not in ms limbo. You are still welcomed on the island.

Shashi - I am glad that you don't have to wait to long. I can understand being claustrophobic. I have to be knocked also to have a MRI.

I am praying that you will get answers this time. I can understand what you mean by not getting answers. It can seem that way after many years in limbo. I am pryaing that this time is diffrent. Lots of (((((hugs))))) and prayers are comming your way.

Zencali - You have been through a lot. Bless your heart. I hope you get to feeling better. Lots of (((((hugs)))))

Have a good day limbo island.Lots of (((((hugs))))) and i hope the week has been good for everyone.

[minivanmama]

TGIF.

I hope everyone has a good weekend. I was just seeing how everyone is doing.

I have a busy weekend and that is good. I am so not looking forward to my neuro apt next week.

Lots of (((((hugs))))) everyone and have a good weekend.

[jumpinjiminy]

Hi all, checking in to Limbo Island. I might try that cranberry mix. There has to be a reason I put some in the cabinet, right? lol

My doc insisted I drop off the baclofen to 10mg 3xday instead of 15 mg, so the spasms are worse now, along with the tremors. And surprise! The brain fog is still there. Today I felt like a total zombie, like I was going through that colicky infant no sleep routine again. But I got a lot done today. Ran up 30 minutes away for a chest xray, then back south another hour for some personal business, then back up north another hour for a mammo and echocardiogram. Coming back home, I just wanted to sleep, even though I had an excellent ten hour sleep last night.

Then I talked on the phone with my sister who related that my mother doesn't think anything is wrong with me and I'm being a hypochondriac. Nice. The woman never could muster an ounce of compassion for any of us. It's a surprise we can muster so much for her.

It's comforting that NONE of the docs I've seen have considered me faking, and they all admit something is wrong, they just don't know what it is. I'm only two months into this series of attacks and I'm wondering how long it's going to last.

This last week has been mostly trigeminal nerve stuff, not pleasant, but I don't get those very often. I did have some last summer and was treated for TMJ, which took months to help, but I think it did help some.

I made an appointment with a neuro-optho way off in the beginning of November, and tried to make an appointment with an ENT/voice specialist for testing, but the scheduling department never called me back. I will have to try again next week.

Next week I'll hear back about all the tests from this week, and meet with the neuro on the 7th.

Good luck all. I hope we find some answers soon. Funny how we have the greatest health care system in the world, yet so often have to wait a month or two for testing or appointments. No wonder it takes so long to get diagnosed. Does a person have to lose bowel and bladder control, vision, hearing, mobility or some other major function to get some action out of these guys or what? I have to wonder if it where their brains and spinal cords under attack, would they be content to watch and wait months as the damage continue to accrue?

I've never been good with patience.

[minivanmama]

Jumpinjiminy - Welcome to the island. I am so glad that you stoped by. Enjoy your drink and the island.

Boy did you have a busy day. I would have to take a nap also if i did all that running around. Good luck with your apt on the 7th. I hope you get on the road to finding answers.

I know that patience is hard. I don't know how a doctor would handel all that we have to go through. I don't think they would like to wait. I hope your mom will come around. I know it can be hard of others to understand that a answers can take some time.

I hope that you get to feeling better soon. Keep us posted on how you are doing. Let us know how your apt went when you can. Post anytime and know that we are here for you good or bad.

Lots of (((((hugs)))))

Good night limbo island and sweet dreams. Have a good weekend and don't over do it. Lots of (((((hugs)))))