Calling all limbolanders-limbo check in 1/25/2011

[minivanmama]

Good Afternoon 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 everyone is doing good and 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? 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 - 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.


To jrswannie1 - I am glad that you know you are not alone in your cause. You are right we will live.

Lots of (((hugs)))


I am at home resting to day. I had a long day yesterday so i need a down day. It is raining here today so it is a good day to rest and stay in.

I am doing better and have not walked into a wall today. I hope this flair will not last long as i have to much to do. My right leg is weak and the fatigue is getting to me.

Well i am going to eat my lunch. Have a good day limbo island. Lots of ((((hugs)))) everyone and i will check in later.

[ShakespeareMama]

Get some good rest, minivan. I hope your leg stops giving you problems, soon.

Today is calmer for me. I shall look for a new doc and stay reading these posts/threads to keep my sanity in the meantime.

I'm borrowing a cabana girl to keep my coffee stocked and maybe massage my left side as that is my ailment, today (other than the bloody nose I woke up with).

Have a sunshiny day!

[jumpinjiminy]

I've got the tired thing going too. A little bit of fever coming on but not really high yet. I have been doing a lot, adding in some aerobics, yoga and all the other activities like getting back to my home cooking, cleaning house, etc.

Yesterday I was slowed down a little, and today was spent running all over picking up records and trying to get them faxed to neuroimmuno who I will be seeing tomorrow. I had to visit five docs offices from here to there. Thank goodness my client canceled today for illness, because when I walked in the door I was ready to collapse.

As my next endeavor will be the family dinner, I think it's probably time for a nice relaxation/hypnosis session to let go of the stress and reset the mind.

Ahhh. It's almost as good as a massage. Big, long day again tomorrow, then on Thursday the follow up with the neuro-opth. Then can I breathe for a bit?

This weekend I'd love to have a shopping date with my daughter. It was her birthday last week and we never got together. Please, please, please, no flare up after this busy week?

[Lori Lee]

Limbo that's me

I'm having a fair day though. I am thankful to have found the message boards they have been strangely comforting.

This week I am kicking myself for not recognizing the vibration in my left leg was just that. After I came out of the hospital in August I was in complete denial.
You know do you have this or that .... No I'm fine. Fortunately my husband was with me and was spilling everything.

Most nights when I lay down I have this feeling in my left leg that I could only describe as the feeling that the bed makes when the washer is spinning out except only in my left leg. Vibration is the perfect description. I feel so much better to have a name for it.

So this week no DR appointments but lots of research thru the threads. Thank You.

I do have a question though. I am having a follow up MRI on 2-7 and wonder should I ask for them to do one on my spine as well? I have had one of my brain and one of my c-spine.

Results: Two lesions on my brain
degenerative disc on c-spine

Sx Too many to list the most bothersome are the left side weakness, back neck pain, bladder issues, Word finding and short term memory issues.

Blessings!

[Pressed not Crushed]

Hi am new to limbo land (again) I had new symptoms in the beginning of December (facial numbness, numbness in my arms and burning patches of skin) that brought up the question of my pain and weakness in my hips and knees that had been going on for 2 almost 3 months at that time to possibly be M.S. My Dr. said he didn't think it was M.S. because he didn't think the symptoms could start in my legs but should start in the upper half of my body. I got him to still refer me for a MRI. He went on vacation and then had a family emergency so now 3 weeks later I was just told today that my MRI results were non specific and got a referral to a neurologist. So I am waiting to get that referral so I can make an appointment. I am frustrated with the months between appointments and slow response times.

They also have me doing physical therapy to strengthen my back. All the exercises cause me so much pain and there a few that I have talked them out of doing but I still have to pop a vicodin before I go to PT. The worse part is I don't feel like I am moving any better so I am just going to PT to get tortured and nothing positive is coming from it.
Since my MRI showed something then I am back to thinking it is M.S. because my joint pain I think is caused by muscle spasticity and the other random nerve related symptoms.

On the positive side both my husband and Mom have been very helpful in encouraging me and doing things around the house to help out with keeping it clean.

[yellowlemon]

New to site

Hi all,
I am new to this site, it is so great to find you all.
I have been having symptoms for almost a year now. They come and go...seems like every other month. It all started in the spring. I was on a fitness fetish! Instead of getting stronger I was getting weaker and fatigued, then I started having balance problems.

Fast forward to July..Balance problems again, jumpy vision, weak and so tired and shaky.
Saw an eye Dr and P.A. The PA said anxiety and the eye Dr. said glasses. Nothing helped. Got a little better and then in Sept bad attack major fatigue sleeping so much, balance problems, tingling in hands shaky! Then I saw my Dr. he ordered an MRI of the the brain w and w/o contrast it was normal he also ordered an ENG it was not normal, nystagmus. Felt better until Christmas, major fatigue, weak, had three falls. Now two visits to the Neuro. on the first visit he said it was all in my head. My exams are normal...second visit not so normal...R hand tremors and could not stand with my eyes closed.
He ordered an EVP and a BAER I see him on Monday. Today I am not so tired but my feet are burning, I have shock wave pains in my upper back and leg cramps.
I am hoping for something to be resolved during my upcoming visit.
Sorry for the long message.
Lemon

[minivanmama]

Good Afternoon limbo island!

Shakespearemama - Good to see you. Thank you for thinking of me. I am trying to rest as much as i can. I did get some good rest yesterday.

Good luck finding good doctors. Stat close to the boards and know that we are here for you.

Enjoy the coffee and lots of ((((hugs))))

Jumpinjiminy - Good to see you. I hope you can get some rest. I know your week is getting busy. I am praying for no flair this weekend so you can spend time with your DD.

I am glad that you have all your records. I know you are on the edge of your seat. Let us know how your apts go and know that we are here for you.

I hope you get to feeling better and that you can get some rest. Lots of ((((hugs))))


Lori Lee - Welcome to the island. I am glad that you found us and you know you are not alone. I am sorry that you are looking for answers. I hope answers will come soon.

I would ask about haveing a MRI of the spine. I think it is a good idea to cover all of the spine that you can. I am glad that your neuro is doing a 2nd MRI. I hope it will get you some answers.

I am glad that your husband was with you and letting your doctor know what was going on. I know it can be hard to let doctors know what is going on.

I hope you get to feeling better soon. I am glad that you have found comfert here. Stay close to the boards and know that we are here anytime.

Take care and lots of ((((hugs))))


pressed not crushed - Welcome to the island. I am glad that you found us and you know that you are not alone.

I am sorry that you are getting the run around. It is fustrating and slow. I am glad that you are going to see a neuro. I hope you don't have to wait to long to get to see one. I hope that the neuro will get you on the road to getting some answers.

I am sorry that you are hveing so much pain and PT is not helping you. I know how frustrating that can be. You have been throught a lot and i know the pain can make you feel worse.

Just know that we are here for you as you wait and when things are bad. I am glad that your husband and mom are there to help you. I know that helps you feel better.

Take care of yourself and lots of (((hugs)))


yellowlemon - Welcome to the island. I am glad that you found us and you kow you are not alone.

I am sorry that you are feeling so bad. I am glad that you are seeing a neuro and i hope you will get some answers at your next apt. I know waiting i hard.

I am glad that you are feeling some better. I have balance problems and i know that can be hard to deal with. I hope that all of your SX will go away soon.

Let us know how your apt goes and also keep us up to date of how you are doing. Just know that we are here for you anytime.

Take care and lots of ((((hugs))))


Well i am off the get to kids of the bus. I am hopeing to get some rest later today. I have a lot to do in the morning so i hope i am feeling better.

Lots of (((hugs))) everyone. I will try to check in later.

[katno]

new here

Hello..I think I found the right place..I am very much in Limbo. It started in 2006 had a brain mri that found 20 lesions. My neurologist did a LP that came back negative and that pretty much ended that. Went to another Neuro in 2008 and did another mri saw no new lesions and just left me there..he told me if i lost my site or use of my limbs to come back. I was sent to a rheumatologist to treat my fibromyalgia and he says to me this looks like MS. Confused as ever i just kept up the treatments for fibromyalgia and did what I could to get through it. The rheumy finally talked me into going to a new neurologist who read my mri's and asked me "why haven't you been treated for MS?". I told him about my negative LP and he said but that doesn't always come out positive.

So here I am. I had a brain and thorasic spine mri done with and without contrast on Tuesday and I am waiting for my appt on Monday the 31st to get results. I have never had one done with contrast or on my thorasic spine. Just cervical and that came out negative for lesions. I do have DDD and other things wrong with my discs. Nothing that would be causing the symptoms I am having now. I am now losing control of my bladder and bowels. Very upsetting and hard to talk about. My right leg has never pain most of the time..with numbness and tingling on both sides. I am also very fatigued. I am glad to find a place to wait for my results. I don't understand why it has taken this long to get a diagnosis. My mom has Lupus but my ANA is normal.
I just wish this would all go away. I am so tired of not knowing and feeling like this.

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[LisMG]

Oops! Just found Limboland!

I'm new and undiagnosed and have been posting in the General area so wanted to drop by here real quick and say hello!

Glad I found this forum and limbo island....past few days have been pretty good for me...some numbness and tingling, ear ringing, twitching and my brain hasn't worked most of the time (I joke but the mental stuff is STRANGE) but at least I'm not having the pain that I was having a few weeks ago. So I'm thankful for that.

Hope all are doing ok tonight!

[jsoxfan618]

Hi Limboland.

I haven't checked in a few weeks.
Minnivanmama, sorry you haven't been feeling well. Its not fun. I feel your pain (hugs).
Guess I'm feeling a little down and frustrated myself. No answers only worse or new symptoms. Don't remember if I posted after my appointment with the second Rhumatologist, but she (like I already knew) determined that my symptoms had nothing to do with Rhumatology. She sent me back to the MS Specialist "for them to figure out whats going on."

I've been using the CPAP machine for almost a month now. I do have to say I feel like I'm sleeping better and its easier for me to fall asleep, but my energy level has not gotten any better.

And to top it all off, we've had a crazy month of snow. If I didn't know any better I would think I somehow ended up in Alaska. It normally doesn't bother me much, but this month we've had storm after storm. Living in New England you expect lots of snow, but this is too much. Just to put things in perspective, the snow is taller than my daughter in some spots and she is 4yrs old. That's about 3&1/2 ft. We don't own a snowblower, so we have to shovel. Both my wife and I have taken dives on the ice in our driveway.
Spring can't come soon enough.

Well, I hope everyone has a nice weekend and remember to take care of yourself. I'm gonna try to get some house work done today. My car is in the shop, so I can't go anywhere. It needs an alignment and the radiator is leaking. I'm dreading the phone call from my mechanic.
-jsoxfan.

[minivanmama]

Katno - Welcome to the island. Bless your heart you have been given the run around. I know you are ready to get some answers.

I hope that your MRI will give you some answers. I don't know why it take so long some times to get some answers. It just takes the right neuro to get some answers.

I am glad that your found us and know that you are not alone as you wait. Stay close to the boards and know that we are here for you anytime.

I also have bladder and bowel problems and yes they are hard to talk about. Do talk to your neuro at your apt. I hope that you get to feeling better soon. I know waiting is hard to do.

Let us know how your apt went and how you are doing. Lots of ((((hugs))))


LisMG - Welcome to the island. I am glad that you found us. I am sorry that you are looking for answers. Just know that we are here for you anytime.

I am glad that the past few day have been pain free. I hope that the rest of your SX. Will go away soon.

lots of (((hugs)))

Well i am off to start my day. Have a good day limbo island.

[barelracer]

hello limboland!

MVM, I hope you are feeling better, bless you for maintaining limboland when you are "down"!!!

I am having a rollercoaster ride of things..ughhh...and the stress isnt helping my sx's at all.....

Bladder is still in orbit, I had 2.5hrs of sleep last nite, keep going and going.....bowels are still not sure if they wanna be constipated or the other(ew.)

Last couple of days I have noticed a buzzing in my ear(rt)...dont know how long it lasts, I really only notice when it stops, and then it rings for 10 min or so after...any ideas on what the heck is up with that???

The gabapentin is working some, on a good note...eyes are settled down mostly, fevers are few now(cant think of why that med would do that?but glad it does!), hardly any numbness and tingles,fatigue is fierce, but could be cuased by no sleep...but the pain in my body is wicked!!! should the gabpentin be helping that??

Oh well, the worst of it is my bf of 6yrs and I broke up last nite...wasnt working out...I am a country girl and he is a city boy, and he and my son never "clicked"...

I know it is the right thing to do, but I am still scared...he wasnt always there for us, but on occasion if we REALLY needed him, he was...(but not for my ms dr appt., which I thought was huge for me..). Now he wont be there, my family isnt here for us, so me and boy(who has many health problems too) just have each other, and a couple good friends...

What if I get really bad again??? there are days still that I cannot function...

I have some nuclear test that takes 2 days on monday and tuesday, and I am scrambling to get someone to watch him, then a LP friday...they 24hrs bed rest after that??? He has an appt wensday...

*sigh* so I am very worried about our future...but we didnt need my BF making things worse for us, but with these health things going on...I am worried!

Sorry to lay all that out...I really hope all of you get to feeling better, and get some answers! The run around sucks, I hoping this new dr. stays true to her word and figures me out..!

[stalo]

Barrelracr

Try not to project worry about the far future...it is wasted energy! You may not get bad again...there may be someone in your life that will step up to help you...I believe that if you let Him, God will take care of things. I know that planning for child care during your appts is stressful, but do they have an option at the clinic you are going to? Regarding the LP...I lounged on the couch after mine. I was able to interact with my kids & even made a light supper (pizza!), so you are not completely incapacitated!

Good luck with everything...lean on your friends...pray (if you do) and trust that this journey has a purpose. Blessings!

[salamandertom]

Hello,
I am officially leaving limbo land. I have been diagnosised with MS, today actually. My LP came back with the antibodies and 15 Obands. Thanks for letting me stay with you, it was a short stay, but very pleasant.

Sasha

[polopuppy]

Let Me Introduce Myself to Limbo Land

Hello Fellow Limbo Landers,

I am a 45 year old married women with 2 young adult sons. I have been in diagnostic limbo since 2003. Wow, it is really hard for me to believe it has been so long. I was actually diagnosed with MS for about 1 year from late 2003 until the end of 2004. I was on a DMD(Copaxone) during that time frame. The diagnosis was then reversed.

I am lucky to have a very strong team of physicians that have been following me for this entire length of time. I live in the SF Bay Area and have access to several fine teaching institutions.

In many ways I fit all the diagnostic criteria including multiple brain lesions, brain stem lesions, positive LP, etc, etc. The problem is that I have multiple systemic issues that developed at the same time as my neurological ones. My physicians believe all the problems are related and that I have some rare autoimmune disorder that is about 80% neurological and 20% systemic.

To be truthful, I don't really care what I have or don't have. Don't get me wrong, I used to care a great deal but my priorities have evolved and changed over time. I am happy to have physicians that watch me closely, take me seriously, who treat my symptoms and take care of me when I am sick.

I just want to be able to continue working (at a modified schedule), enjoy my friends and family and travel when I can. I try to be active and take care of myself as well as I can.

I do fairly well between flares but become very ill when a flare hits. The frequency of flares can be as infrequent as twice a year and as frequent as one a month. There is no rhyme or reason to them. My symptoms improve after the flare but do not seem to go away completely.

My biggest issues are persistent double vision (I wear prism glasses all the time), loss of my gag reflex, difficulty in swallowing, vertigo, numbness and balance issues. Most of my symptoms are a result of my brain stem lesions.

I look forward to getting to know all of you. Wishing you all a happy weekend.

Sincerely, Polopuppy