Calling all limbo-landers limbo check in 10/18/2011

[minivanmama]

Good morning limbo island! It's time to limbo! The sun is out so grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how you are doing.

How are you doing/feeling this week? I know it has been a hard week for many. I hope this week is better. I hope you can come to th island and rest some.

Are there any doctors apts this week? Any test this week? Any doctors or nurses that need to swim with the sharks? If you need to scream go to the middle of the island and remember that you never scream alone.

In island news - Welcome to all our new islanders. Also chucklebug was DX this week with MS. let us know how you are doing from time to time. I am glad that you have answers now and i know that it comes with a mixed bag of feelings.

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

TO loadedbutane - Welcome to the island. I am glad that you found us. I hope you will get answers soon.

I hope you get in to see the neuro soon and get on the road to finding answers. Keep on posting and know that we are here for you anytime you need us.

Lots of (((hugs)))

TO jsoxfan618 - Good to see you. I hope you are at the end of the dock. I hope you have a good week and get to feeling better.

I am glad that your neuro is looking into MG. I pray that you will get your biopsy and blood work soon. I pray that you will get answers. Let us know how things are going.

Lots of (((hugs)))

To fish - Welcome to the island. I am sorry that you have a lot going on. I am glad that you found the island and know that you are not alone.

I hope your neuro apt went well. I am glad that you have your art to help you. Keep on posting and know that we are here anytime you need us.

Lots of (((hugs)))

To derrie - Good to see you. I am feeling some better. I am sorry that your pain is just not going away. I hope you neuro will get to the bottom of things soon and you can get some relife from your pain.

I am glad that you have a good neruo that wants to help and find answers. That is a big help. I hope you get good news with the other test that you are waiting on.

Lots of (((hugs)))

To rbs - Good to see you. Bless your heart you have had a hard week. I know you are so fatigued.

Do talk to your doctors and see how they can help you. I am glad that you don't have to drive your son to school now. I know that is a lot of help.

Just know that we are here anytime you need. It is ok to ramble here. You need to do that. This is the place to do that.

Lots of (((hugs)))

To maitrimama - Good to see you. I wish i could find house. I just want one with a better bedside manner.

I hope you can get some answers about your MRI. I can see why you would be confused. I know i would be. Let us know what you find out.

Lots of (((hugs)))

To strhuntress - Welcome to the island. I am glad that you found us. I am sorry that you are getting the run around form you doctors.

I hope you get to feeling better soon. Keep on posting and letting us know how you are doing.

Lots of (((hugs)))

To Jumpinjiminy - I wanted to add that i to have been told to go to mayo or to cleveland clinic. I did cry when my rehumy told me this. so i know where you are comeing form.

I think you have to be ready to take this step. I am not ready to go yet. I have to same feelings you do about just wanting this to be over. Just know you are not alone and if you need to talk you can e-mail me.

Lots of (((hugs)))

To shakespearemama - bless your heart. I am so sorry that you are haveing such a hard time. Lots of (((hugs))) and get to feeling better.


Well i am off to start my day. I will check back later and lots of (((hugs))) everyone.
P.S. my spell check is not working. I hope my spelling is not to bad.

[maitrimama]

And So It Goes...

Hi all - I'm doing okay. I have appts today, EEG, Pysch and Ophthalmologist. I still find it very odd that the neurologist thinks it is anxiety driven but my psychiatrist doesn't. I think I am leaning toward getting a second opinion.

My fears are that damage is being done (especially my eyes) and it could be prevented, because "they" missing something. I would welcome Dr House, crummy bedside manner and all!

Good news is that I have my teenage daughters this weekend and we always have fun. Gratitude Rocks!!!

[derrie]

Howdy, all.

MVM-- Thank you, as always, for the personal greetings. It always makes me smile!

Maitrimama-- Good to hear you're getting to hang out with your daughters. How'd the appointments go?

As for me, I'm in crazy pain today. Again. Like most days. I seriously don't understand where it's coming from, and I'm probably a little unhealthily focused on trying to find an answer. It's amazing how single-minded pain will make you: all I care about is not being in pain. Compared to the pain, the paresthesias and fatigue are just fine.

The long-acting ropinirole (Requip XL) I have been taking has done nothing. I was disappointed. I was optimistic that this was going to be my magic bullet because the doctor suggested this might be a form of RLS.

So it goes.

I have a lumbar puncture on Friday. Nervous about that. But if it leads to some form of relief, it's worth it. Otherwise -- if it's normal -- I'm not sure what happens next. I'm completely happy to play wait-and-see, but I would like to find something that makes the neuro pain go far, far, FAR away at least.

How's everyone else feeling? Best part of y'all's weeks so far? For me, it was a visit from a friend from out of town who was passing through. We had dinner and talked about life. It was lovely.

[mareintx]

Well, I'm new here. I've been lurking since the neurologist threw the letters MS out there.

So far I've had MRI, MRV and MRsomething else...with and without contrast. I've had blood work. I've had an EEG. And a LP.

I'm currently waiting (anxiously) for results.

The neuro thinks, right now, that I'm either having seizures or that I have MS....or ??? I'm ready to have a name to go with what is going on with me. But I know that I may not get that right now...or even ever.

I figured I should jump in and say hi. Ya'll have already been such a huge help to me. I hope I can give back somehow.

[derrie]

Mare, welcome.

I figured I should jump in and say hi. Ya'll have already been such a huge help to me. I hope I can give back somehow.

I'm glad this board is helpful to you. The support here is fantastic!

I think one way you can give back is just by sharing your experiences. When I am questioning whether I am sane ("Is this all in my head?") or I'm nervous about a procedure ("Is this going to hurt very much?"), a quick search of the MSWorld boards provides me with volumes of information about other folks' real-life stories. It's informative and calming to me. To know my situation is not strange or unique.

So give back by sharing what you experience-- to the extent you're comfortable sharing. Some time in the future, someone might be searching the boards and realize that what they're going through, you've gone through, too. And your stories can be a comfort.

That's just one little thought I've had. And do keep us posted on what happens with your test results!

[rsb]

Hi limbolanders


Already a bit of a rough week. My 4 year old was on abx for mycoplasma pneumonia last week, and he recovered pretty well by friday, but declined again sat and sun. I took him to the doc monday and he has a bilateral ear infection, bronchitis and pinkeye. Kept him out of school, and his aide called to tell me that 4 of the 8 kids in his class were out with strep! He and my 2 year old both have mild immune deficiencies, and I'm on methotrexate, so I'm keeping him out for the rest of the week. Which um....is challenging already.

I woke up with the slightest cold symptoms yesterday, then today I had a VERY slight runny nose- but my neuro symptoms have been getting much worse. I know MS and lupus both will get exacerbated by illness, and MAN I hope this isn't a sign of what's to come this winter! All of my physical sensations (weakness, heaviness, tingling, etc) were right-sided until yesterday, when they decided to invite their left counterparts to the festivities. AND I started getting the random spots on my skin that feel like- a buzzing cell phone; ice; a hot poker; and, my personal favorite, drops of water. I also have twitches/fasciculations all over my body- they started on the right side and moved to the left when the weakness did. Weird.

As for appointments, I see my MS neuro on Thursday- luckily, I haven't had any of the seizure-like activity in several days, and my cognitive function, while not back to my post-babies baseline, is not nearly as bad as it has been. So to that!

Hope everyone has a good week- or a week that's as good as possible.

[minivanmama]

maitrimama - Good to see you. You had a busy day. I am glad that you are feeling ok. I hope you can rest now.

I hope you got good news and that your apts went well. I am with you. I would take Dr.house right now with the way my leg feels.

I am so glad that you get time with your DD this weekend. Have lots of fun. Lots of (((hugs)))

derrie - Good to see you. I am sorry that you are in so much pain. Pain can make you want to find answers and find a way to make it go away.

I have pain in my leg that won't go away and most days i don't think about looking for answers but the pain makes me change my mind.

I will be praying for you on friday and i pray that you will get some answers. I hope you get to feeling better and your pain will go far far away. Thank you for your kind words. lots of (((hugs)))

mareintx - Welcome to the island. I am glad that you posted and have found help here. I know waiting is hard to do. I hope you will find answers soon and your wait is not long.

derrie said it best when it comes to givening back. You will find ways to help as time go on. Keep on posting and let us know how you are doing. Lots of (((hugs)))

rsb - Good to see you. I hope your little ones will get to feeling better. I know it is hard when they are sick and you are not feeling well yourself. I hope that you all will get to feeling better. I will be praying for y'all. I think keeping them out all week is good. I know it is challenging.

I am glad that your cog fog is better and that your seizure activity is better. I hope your neuro apt will go well and that you will get to feeling better and that your neuro will be able to help you.

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


Had a good weekend. I went shopping with my Best friend and we had a ball. I walked the mall and did not let the pain stop me. Now the next day was a diffrent story.

My foot drop is back. It is driveing me crazy and i have scraped my best shoes. I am still trying to deal with emory and they are makeing the red head mad.

Well i am off to bed. I am going to post about emory and see what others think i should do. I am not sure what to do. Good night limbo island and sweet dreams. Lots of (((hugs))) everyone.

[Rhian]

Hello to everyone in Limboland.
I was able to get an appointment with the neuro that my doctor recommended after we talked about my former neuro cancelling on me at the last minute. He said she is very good, treats her patients really well, and that she is who he would recommend for a family member. I'll see her on November 7th. Not much else has changed, although my back pain has shot through the roof this week. Drop foot seems to have mostly gone back to being non-droopy, which is nice.

I hope that everyone is having a good week and making progress towards getting out of Limbo.

[ShakespeareMama]

Hello! I hope everyone (and their children!) are well or at least on their way to being well.

My new news of the week is that by, hopefully tomorrow, I will have a new wc.

My left leg decided it no longer likes me and won't hold me up anymore and wants to have spasticity like nobody's business.

I was very scared at first. I still am... But I'm now excited, as well. I have been having to get around sitting on a skateboard for the past 4 days and I can not ask for a wc enough! My butt is killing me!

I can't wait to go back outside, if even to take out the garbage.

I did write a thread called "Transitioning" that explains all my more negative feelings. This is a big change for me and super scary in ways. Feel free to read that thread. It may help some of you islanders prepare for what may be the inevitable.

I am hoping I won't need the chair for long, as I've never had a symptom last more than a couple months, at most. Even if I cleared up by the end of the week, I'm soooo much more comforted that I am prepared!

So I guess the moral of the story is, try to be prepared!!! In fact, I think I will start a thread to get experienced people to give advice to us "newbies" of sickness.

I'm off to go do that, now.

Minivan, I hope your foot drop and your pain let up. I'm sorry you feel like poo after your day at the mall. I hope you at least had fun actually going, though! I'm also sorry about your shoes. Maybe it's time to get some steel-toed Doc Martens like me. Hehe
Trust me, they're durable, supportive, last forever (10 years and counting on mine!) and that steel toe had saves my piggies countless times! The only thing I'd like to alter is the laces for velcro. Oh, buddy. Talk about the perfect shoes!

Maitri, good luck with the docs. If you find House, please pass him my name. And have fun with your daughters!

Derrie, I hope your pain eases up. Good luck with the LP. I think I saw a thread from you asking how to prepare for it. If it wasn't you, maybe you'll want to read it. I can't remember what it's called, exactly. I'm glad you spent some time with your friend.

Mare, I hope you get your results, soon. It can be maddening wondering what's going on. I hope you have good doctors and they can get to the bottom of this for you. Derrie was right on with telling you to participate. For me, hearing other people talk about their situations is, sometimes, the best help for me.

RSB, I hope for a quick recovery for you and your son. I'm glad things seem to be lightening up for your sxs. I hope they continue to lessen. Remember to keep those hands washed!

Rhian, I'm happy your foot drop is undroopifying itself. I hope your appointment goes well on the 7th and the doctor really tries to help you.

Good night, all! I'll see you tomorrow!

[jumpinjiminy]

MVM, that's wonderful you were able to have a fun day at the mall with your friend. I know the 'day after' syndrome well. We had a ball with our kids playing laser tag about a month ago. It's worth it sometimes.

Yes, the Mayo. I know they won't tell me it's MS because the MRIs are clean, but the docs think they might have some specialty testing not available to docs here. I'm still searching for evidence of that. Who knows? Travel like that is okay if it's for fun, somehow. But in a situation like this, where three neuros here, one very specialized, hasn't been able to make any diagnostic calls, why subject myself to a dozen more tests, along with all the bills they generate?

We haven't had a vacation in three years or better. Maybe even five years. This might sound incredibly idiotic of me, but at this point, I'd rather spend that money on a family vacation - or two!

I'm mentally ready to just deal with things as they are, as they come, and forget about what might be down the road. I will cross that bridge when it gets here.

In the meantime, I started PT yesterday and she found some things I hadn't expected. We're starting very slowly, with pilates type exercises meant to connect your mind to different supportive muscles of the core, and increase their endurance. Once past this stage, (they're all done lying down) I will do them standing up. The idea is for these patterns to become automatic, like breathing. I really like my PT and we have six weeks to do this.

I'm so glad I went back to school. It really helps me to get my mind off all of this. And it's a great place to meet new people. Now, I have to study for a midterm.

ShakespeareMama, I'm glad you were able to get yourself a wheelchair and are getting past the vanity of it all. It's very courageous of you. I hope this heals up quickly and you don't need it very long. And thank you for starting the thread on preparing. I'll be following it, but have decided to stay cloaked in denial for the time being because I need it that way.

[maitrimama]

Calling In The Big Guns

I am sure this sounds familiar to many:
1) Weird stuff started happening but I did my best to explain it all away - I need new glasses, I've always gotten headaches, I am just out of shape

2) Psychiatrist catches on & asks me to make a list of "symptoms" and encourages me to see my GP

3) GP is concerned orders tons of bloodwork and MRIs. He also has me set up an appt with the Neurologist.

4) Meet with the Neurologist and feel dismissed. From what I can she thinks it is anxiety related. When talking about balance she said "well have you fallen" and I replied "no, not yet." she ordered an EEG and forgot to give me referral to an Opthamologist (my vision being a chief worry). I later called the Neuro to get the name of Opthamologist who turned out to not be taking new patients. I found one on my own.

5) EEG done, no results yet.

6) Met with the Opthamologist who turns out to be both a GP and a Board Certified Opthamologist, I think that will work to my benefit. She is old fashioned and very thorough. She requested all my bloodwork and has suggested that some of the tests (thyroid, lyme's) at what she considers a much better lab (my insurance will cover). She said their is evidence that there was inflamation, pressure is not only high but uneven as well and one isn't focusing. She is going to do field of vision tests, sensory testing and follow the intraocular pressure.
**she didn't seem impressed by who my Neuro is

6) My Psych still doen't think it is in my head and I feel like I am running in circles.

7) I am calling in the bigs guns. ~15 months ago I had a crazy reaction to a combination of medications. I was a mess. Headache, loss of balance, cognitive function was horrible, lots of involuntary movement and more. Once off the suspected medication I slowly improved but never 100%. I was able to go see Dr Lucien Cote a very highly respected Movement Disorder Specialist (more Parkinson's) at Columbia Presbyterian in NYC. I saw him several times, we never got to the bottom of what happened. Last time I spoke with him was when he called me from his home on the fourth of July to see how I was doing. He told me to call him anytime with any questions or concerns. I think now is the time to call and get his opinion.

I will keep you all posted.
I am sorry this got so long but it felt good to get it out.
TIA - M

[derrie]

I was able to go see Dr Lucien Cote a very highly respected Movement Disorder Specialist (more Parkinson's) at Columbia Presbyterian in NYC. I saw him several times, we never got to the bottom of what happened. Last time I spoke with him was when he called me from his home on the fourth of July to see how I was doing. He told me to call him anytime with any questions or concerns. I think now is the time to call and get his opinion.

Yes! I am glad you have decided to get the opinion of a doctor you trust. I think the trust relationship is key. It sounds like he is the kind of doctor you want-- one that is caring and thorough. And if -- for some reason -- you can't get to the bottom of what is causing this, it sounds like you will likely be able to be comfortable with the effort he made, which is a peace of mind you won't have with a neurologist you don't trust.

I will keep you all posted.
I am sorry this got so long but it felt good to get it out.

Do keep us posted. And definitely don't apologize! It's what we're here for, right? Mutual support? So no apologies for getting it out, ok?

[valeriem2220]

I have been feeling pretty good lately, knock on wood. I have had the usual annoyances, skin burning, occasional shocks when I move, balance issues. I don't know if they are getting better or if I'm just growing accustomed to them and they are becoming a way of life now. Although when the burning gets into my eyes I cannot tolerate it and it has me down for the count.
I have had a constant stomach ache for about a month and a half now, some days worse than others, and will need to talk to my neuro about it once again. I believe it is one of the meds he has me on.
I go back to the neuro Oct 26th. I hope I am still feeling good then.

[Mama_Darwin]

What's the psychiatric term for the fear of hypochondria?

i had a (brain) MRI and EEG week before last (ordered by my wonderful PCP). Since i'm me, i got a copy of the MRI CD, and have already looked at it. Granted, this MRI had some different views than the two i've had before, and when it comes to the brain stem area, i have no idea what i'm looking at. But other than one little pale smudge (which was also present in my previous MRIs, but seems perhaps a little more pronounced in this one), i didn't see anything that my non-medical self would interpret as lesions. i don't yet have the EEG results, but the technician (or whatever you call the person who performs the actual test) did mention that my brain waves barely changed at all during the strobe light section, and that neither that nor the hyperventilating part triggered anything.

Anyhow, i go to see the new neurologist Friday of next week. My PCP ordered these tests (along with a battery of blood tests) in order to have more information with which to provide the new neuro (since i've had to wait nearly 4 months for this appointment).

i've got two sets of symptoms; the ones that never go away, and the ones that tend to be episodic. Constantly, i have decreased sensitivity/numbness over part of the left side of my face and left hand/fingers, as well as large patches on my back. i also have slightly clouded vision (it's not double vision, just like a light mist, mostly in the upper left quadrant of my vision) all the time now. The numbness has been constant for over a year. The vision has been like this for over six months now. i have been tracking my symptoms, and just last night, looked at the patterns for the first time. Every so often, i have episodes where some or all of the following symptoms come and go over a period of a few weeks to a few months - pain (it feels like somebody is sticking needles in the affected area), tingling, fatigue (i'm not talking being a little tired - i mean feeling like i've been drugged), difficulty with balance/gait, general clumsiness (even more than usual), and urinary incontinence. Oh, and insensitivity to heat. When i'm in the middle of one of these periods, if i get hot, either through exercise/activity, or by being someplace hot (like getting into a car that's been in the sun), i often get symptoms crashing suddenly down on me.

Okay, so i have no idea what the bottom line is. i've dealt with depression most of my life, and anxiety for probably the past 10-15 years. And as much as these symptoms look and feel real, i can't help thinking that it's just my mind. My PCP is convinced that this is not psychosomatic, both because of the duration of symptoms, and because of my general lifestyle. But honestly, i'm a very nervous, and sometimes obsessive, person. Whatever this is, i want two things. First, if there is some sort of treatment, i want to treat it, even if "it" is hypochondria. Secondly, i want to have some idea of what to expect. Should i expect to get worse over time? Better?

i feel foolish any time i address my symptoms to anybody, because i really am very afraid that it's nothing more than my mind creating some illness.

[derrie]

Mama_Darwin-- I'm with you. I know exactly what you're talking about. I think my neurologist believes there's something wrong with me more than I do half the time. I mean, I have these symptoms, but sometimes the pain or tingling or weird face squinching wanes for a day or two, and I get it in my head I was making it all up -- or at least exaggerating.

The time leading up to appointments or tests is especially hard for me because I keep almost talking myself out of them. I have a lumbar puncture scheduled for Friday. I called my neurologist's office today, and couldn't keep myself from asking his nurse if she was SURE that he REALLY thought I needed the LP.

"What makes him think I really have something wrong with my central nervous system?" I demanded. "Are you positive this is really necessary? Can we wait to see if anything else crops up or if I get worse?"

"Take a deep breath," she said. "You need to get the LP. He's conservative with LPs. He wouldn't order it if he didn't really think you needed it."

But yeah-- I know exactly what you mean. I look very healthy on the outside. I'm young, just turned 30. I've never had anxiety or depression issues, but I'm incredibly anxious now. I'm anxious that everyone I know will start to think I'm a hypochondriac, since no tests are coming back positive for anything. The longer I stay in this diagnostic process without actually getting anywhere, the more self-conscious and self-doubting I get. It's hard. I get it. I really, really get it.

So aren't we lucky we have MSWorld and our little limbo posse? We can support each other through exactly these stresses!