Calling all limbo-landers limbo check in 11/8/2011

[minivanmama]

Good Afternoon limbo island!! It's time to limbo!! The sun is out and the weather 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.

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

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

In island news - Welcome to all our new members. Just know that the island is always there any time you need it. I am glad that you have found us and know that you are not alone.

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


This is a busy week. Today is my youngest son's birthday he is 7. On Thursday i am going to see the MS neuro. We will see if he gets fed to the sharks or not. I have been seeing him for 2 years and he has done nothing.

Well i am off to get homework started and then out to dinner with the family. I will check back in later. Lots of (((hugs))) everyone.

[derrie]

Hey, MVM-- I hope your son had a great birthday! And good luck at your appointment on Thursday. Keep us posted.

I'm just waiting on the last round of weird blood tests to come back, and then -- unless one of those tests comes back conclusive -- I'm going to Mayo in Minnesota. Anyone been there? My neurologist has repeated a few times that he thinks this could be what he calls "MRI-negative MS." I challenged him on that, saying, "Really, do you think that, even with my normal LP results?" He agreed that I would be a rare bird, indeed, to end up with this being MS.

What we do know is that I have symptoms of an inflammatory condition localized to my spinal cord. Steroids work briefly but the symptoms come roaring back when I go off them. I'm young, and I have not yet encountered much disability (beyond a gradual decrease in my overall quality of life), so I am feeling a renewed desire to figure out what in the world is wrong with me, so we can treat it. I don't want it to get worse.

Anyway, Mayo vacation, woohoo. Or something. If I end up going, I'm sure it will be an adventure, if nothing else.

[minivanmama]

derrie - Good to see you. My son had a great day. Thank you and i will let everyone know how my apt went.

I hope you will get answers and you don't have to go on a mayo vacation. I am glad that you are feeling good about looking for answrs. That is good.

Keep hanging in there and looking for answers. Lots of (((hugs)))


Well off to bed. Good night limbo island and sweet dreams. Lots of (((hugs)))

[browneyedlana]

Hi fellow limbo landers and I hope all are doing well!

Had the nerve conduction test that verified severe carpal tunnel and the echo with bubble that verified no hole in my heart.
I called the neuro to do the LP next and was told all my MRIs were within normal limits.???!!!??Are you freaking serious I say?You just told me I have 2 lesions and and dxed with a demylienating disease. Turns out were reading wrong file or something.They are supposed to get back with me to let me know if a LP is now advisable or not.
Whatever don't care anymore.I am gonna take a little break from the crazyness and just chill.

Been buzzing, spasming, headaches,blurred rt eye and fatigue.Also now have the pain around my middle oh well must be all "normal" huh?
Good luck and God bless to all!

[jumpinjiminy]

Happy birthday to your little guy, MVM. Good luck with your neuro. I have a pool of hungry sharks waiting, just in case. Are you taking classes now? What are you studying?

Derrie, I'm in that same boat. Neuro and GP want me to go to Mayo, but I'm stalling on it. I've heard good things and bad things. Maybe I'll go next winter during ski season, if I can still ski, so it can be a vacation either before or after the big slam. I think they pack you full of appointments and tests to get as much done in as short a time as possible. But then I've heard others that have had to stay a month to get it all done.

Browneyedlana, I know how you feel. Last year I spent a lot of time chasing a dx, testing, this doc, that doc, more testing. I was not content to sit and wait for this to declare itself. But after some time, there is nothing more to do than that. I'm enjoying the lull, and it's making it hard for me to schedule follow ups that I should be having this month. I have one, with the neuroimmuno in a couple of weeks, and that's it. I've got a couple of referrals out there, but I'm not ready to choose until after seeing this neuro again. I'm trying to get on with my life and make the most of what I'm left with before it, too, disappears.

My PT is going slowly, which she warned me would be the case. Once we're done doing core work, then we can work on the endurance. I had another week last week where the slightest physical activity (laundry, dishes, grocery shopping) took a major toll and knocked me into Rip Van Winkleville. I'm more than ready to work on that and get some endurance back.

Feeling very headachey, and my ear finally cleared up, but I have an ENT PA that's interested in testing some nasal drainage for CSF proteins for a leak. I always get this on my right side, the headaches, the stuffy ear with fluid, and the nasal drainage. And it always seems to come on after a flare up or long-lasting headaches, too.

Not much else going on. I'm getting slammed with a full day of massage work tomorrow, so I'm hoping to survive it without a scratch. I have a test on Friday and need to study, so I don't want to be in Rip Van Winkleville again after tomorrow.

Cheers, and I hope this week is an easy one for everyone.

[rsb]

Hi everyone- MVM, good luck with your neuro appointment- hopefully your doctor mixes it up and actually does something for you this time!

Derrie, sorry your sx are breaking through the steroids.

browneyedlana I know how you feel- I am getting annoyed and overwhelmed with testing that goes nowhere. I have a bunch of stuff scheduled for the next 3 weeks and I'm really dreading it.

Jumpinjiminy, I'm curious how long you've been doing PT? It's something I have considered asking for, but it would involve a lot of expense (additional babysitting hours) and my fear is that it will just make me feel crappier.

Lots going on here. My best friend visited for a couple of days last week (from England), and he decided my kids needed a Wii. Which the 4 year old loves, but it's a challenge for him, too. I am asking my parents to get me a Wii Fit with the balance board for Christmas, as I my balance is completely gone. My friend was really appalled by how bad it is- I toppled over several times while we were just standing in the kitchen.

I spoke with my kids' geneticist at Cleveland Clinic, at my rheumatologist's urging, and he is getting me in at the MS center and the rheumatology clinic there to be evaluated. The big challenge will be getting my kids cared for while I go- my husband renewed his contract in the middle east, so he won't be coming back anytime soon. Which sucks.

I had really bad arrhythmias and near-syncope events over the summer, and when I got a steroid injection they disappeared completely. I had some mildly abnormal cardiac testing, but nothing that would explain the frequency of symptoms. Since symptoms disappeared with steroids, all my docs decided the problem is lupus inflammation. Well, I've been on oral steroids since August, and the heart symptoms have been creeping back for about a month. In the last week they've gotten so bad I'm having skipped beats several times per hour, all day long. So I'm seeing the cardiologist again Friday.

I'm so tired. I would really love a break from falling apart to just take care of my kids, prepare for the holidays, and just live life.

[derrie]

Derrie, I'm in that same boat. Neuro and GP want me to go to Mayo, but I'm stalling on it. I've heard good things and bad things. Maybe I'll go next winter during ski season, if I can still ski, so it can be a vacation either before or after the big slam. I think they pack you full of appointments and tests to get as much done in as short a time as possible. But then I've heard others that have had to stay a month to get it all done.

A month?! Well, tough for them. I have a job. They get three, four days-- tops. Part of this issue is that I live in a small town in the middle of nowhere. There are certain tests my neurologist now wants done, like a somatosensory evoked potential (has anyone had one of those?), that I can't get done anywhere close by. So I figure, if I'm going to travel for medical tests, why not go to the best?

---

browneyedlana-- I remember hating my nerve conduction test (which ended up being normal), so I'm glad it at least gave you some answers. Do you have treatment for the carpal tunnel planned? And I agree-- these new "normals" suck.

Oh, and JJ-- I'm glad you have another lead on what might be causing your symptoms. I've never heard of a CSF leak, though, except in the context of post-LP. What causes that? Where do you leak when you have a leak?

Rachel-- I'm sorry to hear your husband isn't around to help you out, though it's great that you're getting in at Cleveland Clinic. Never been there, but I have heard good things. I wonder if the Clinic might be able to refer you to childcare services while you're there? I don't know, it's just an idea.

I am honestly so impressed by those of you who are going through this with children. I am single and childless, and find it stressful and taxing enough just to manage work, keep my house relatively (emphasis on relatively) tidy, and give my dog enough walks (thankfully, she's a senior citizen and not too demanding). I just wanted to recognize all you mothers for the hard work and balancing you have to do.

Hope everyone has a decent day!

[photomama]

Good morning. Friday I see the ENT for my hoarseness. I am nervous, more so because I'm a singer and if this is due to my neurological issues, then there really isn't anything we can do about it. And it is one more thing this disease is taking away from me. So I am hoping, praying, it is something else...almost anything else. But the pattern of this symptom (and with what we've ruled out) makes it likely it is neurological in nature. It's been going on for a year or so.

With Christmas coming up, I'm singing a lot more, so it is more apparent. I'm also babying my voice more too, so *shrug*. My voice should be in its prime at this age. It would be a miracle if it is was just a nodule from years of formal singing.

I'm trying my hardest not to yell for my kids when I need them (someone suggested a whistle- I may need to get one!).

MVM- Happy Birthday to your kiddo! Good luck with your appt.

derrie- at least at the Mayo, you'll be able to get all the tests done all at once, instead of traveling somewhere for one test or two. You may get answers too! Good luck on your decisions. I, too have heard some get great answers and others don't. So I think it just depends.

browneyedlana-glad you got at least a few answers. Ugh about them reading the wrong file. I had problems with my last neuro not knowing who he was talking to. Grrr!

jumpinjiminy-interesting about the CSF thing! I love it when docs go out of the realm of normal to test a theory! Hope you are able to get some answers! Yay for PT- It does go slow, but I will say, it was the best thing I ever did. I need to go back again.

rsb- yay for the wii. A hint- when you do use it for balance, get a chair at first. It will help stabilize you. I used it for a long time. I can't anymore, but it really was a big help! ((hugs))

[maitrimama]

I am thinking that all you guys must think I am a big complainer, but I swear I am not. This is the only place that I talk about what has been happening and you all know how frustrating and confusing all the doctors and tests and opinions can be. I grew up in a house where it wasn't okay to complain or god forbid look for a little sympathy.

After several visits to the Ophthalmologist and all sorts of tests she said the dreaded words - Optic Neuritis. I am also having problems with the pressure in my eyes but she feels strongly I need further testing (VEP) because I went in every day for a week to get the pressure checked (at different times) and the pressure was all over the place from 12 - 28. She is also running Lyme tests again at a lab that is known for the quality of their Lyme testing.

So next stop is new Neurologist on Nov. 21st and then off to the Neuro-Ophthalmologist that he works with at Yale. Hopefully he will address some of the other stuff going on that I have just stopped talking about like the fact that the right side of my face has been numb for weeks, ranging from pins and needley to a cold burning.

One last thing (I promise) I am getting really tired of Drs, nurses, technicians etc asking me what "it" feels like! I have never felt this stuff before so how am I supposed to describe it? One Dr commented that I never use the word pain...I don't think I used the word pain when I broke my wrist and the bone was out of place, or either time I gave birth (natural and c-section). So much of this is subjective!

Enough out of me, I don't know what I would do without all of you. I hope everyone's week goes a little smoother than they expect.

Blessings - M

[jskmssss]

Hi Limbo landers,

Hope everyone is doing well today. I called in sick today.
Constipation so bad, laxatives and stool softeners not working. Waiting for Neuro to call me back regarding last MRI. He was going to review it at a radiology conference.
Hope he calls tonight.

Mininvanmama- Hope your son had a wonderful birthday and also hope all went well with neuro. Let us know how appointment went.

RSB- The wi sounds like fun. I also heard it is good for balance. Do you have balance problems due to your legs
not properly functioning or unrelated to your legs? My balance sucks too. I have Meniere's disease
which also causes balance problems so I am not sure if balance issues are from Menieres or brain lesions. I sometimes just go off to the side, fall back or can suddenly fall. Dr. says it could be caused by either.

Derrie- hope u get some answers with the blood tests. How often does he have you go for MRI? Maybe the trip to Mayo
would give you some answers.

PHOTOMAMA - Good luck with ENT--hopefully there is an answer for the hoarseness other than neurological. Where do you sing? do you sing in clubs ?

BROWNEYEDLANA- Hang in there. Can be very frustrating having these dam tests done and not getting answers.

JJ- Hope all goes well with PT and with ENT.

Hope everyone has a good, uneventful week free of symptoms.

[mareintx]

Goodness!! This is all so frustrating!! It seems like in this day and age of medical miracles they could diagnose people at the very least!! Oh well.....

I'm still waiting on the LP results and to do the ambulatory three day EEG. I go to see a urologist on Friday morning and I'm scared to death. I have no idea what he will do or how he will tell why things don't always want to work properly.

Our weather has been all wonky with it cooling off one day and warming up the next...I'm finding this seems to make life just a bit weirder for me. Fun....

Just thought I'd check in really quick....sorry to be so short.

[stalo]

Hello, fellow limbo-landers!
I should really write down everyone's name so I can talk to each of you, but I am sneaking doing this at work, so shhhhhh!

I have been to Mayo, but not for this thing. I was there with my husband when he had some testing for a chronic cough he has. I was totally impressed at how fast they got everything done & results back. We were only there overnight 1 night (we live in Wisconsin, so we drove there). I also was there for my knee. I had a total knee replacement in '04 & it was loose. My Dr wanted me to get come opinions before he tried to fix it. Again...tests were done & results back all within one day. They run a slick program there. AND you don't have to go outside...they have underground tunnels to get you to the different places. That is good, b/c it is snowing to beat the band here right now!

I have adjusted how I take my gabapentin to try to lessen how crazy my skin feels as the day wears on. The Dr won't increase my dose, but said I could play around with how many I take at a time, just don't go over the total amount in a day. Still tingles, pins, zings, whatever, no matter what I do. I had a couple of brief moments this past wkd where I didn't feel anything...like I was normal again! It was cruel for my body to do that...I was really depressed the day after that happened.

I see my neuro PNP on the 15th. She will give me the results of my neuropsych tests & she said she is going to do a thorough neuro test, since last time she didn't. I'll have a follow up MRI in Jan.

Take good care, all. Stay strong & GOD bless all of us as we wait!

Sue

[photomama]

Hi Limbo landers,

PHOTOMAMA - Good luck with ENT--hopefully there is an answer for the hoarseness other than neurological. Where do you sing? do you sing in clubs ?

Lol, thankfully no (though it would be a lot fun!). I just sing for church now, though they rely on me too much. I do a lot of solos and stuff like that.

I used to sing more often for weddings and other stuff. Back when I was growing up, I sang in more formal choirs. If it weren't for my kids' insane schedules, I'd do it again in a heartbeat.

[jumpinjiminy]

Derrie, a CSF leak can be caused by trauma, surgery, or can be spontaneous - which is rare. The spontaneous leaks happen more frequently in people who are hypermobile, so they suspect there might be a connective tissue weakness component, which makes sense. I have hypermobility in spades.

You can develop leaks pretty much anywhere, but there are places where they more commonly develop over others. Consistently unilateral rhinorrhea and/or otorrhea are indicators to dig deeper. I've got those two frequently recurring issues, plus a few other symptoms of CSF leak. It can cause chiari malformations which mimic MS. And, I had a dry LP, which could also be a clue. It's worth looking into.

Rsb, This is my fourth week of PT. I go 2x/week, to keep it from getting to be too much. Plus, the expense would be too high. I do everything here that I do there, except she does deep tissue work to loosen the chronically tight areas and help things function better. Once we master one thing, she adds in another. We're finally getting up to the upper body, and once the general strength phase is complete - I'm expecting another two or three weeks - then we finally get to the endurance phase.

She makes sure to go slowly because she doesn't want to flare anything up by pushing to fast. She's careful to leave room in my day for daily activities that still continue to be a challenge. Because of this, it doesn't make me feel worse. I've been a little sore a few times after the deep tissue work, but it needed to be done and I know that drill well. I was actually expecting to be more sore, as painful as it was when she was working on it.

I'd love to hear about how your experience is at the Cleveland Clinic. This was suggested by an MD intern at my GPs office because of all the autoimmune things they were uncovering. She says they're the best at autoimmune diseases in the country.

Hugs, and hang in there. It's hard to put these things out of your mind and move on, but you can, and you will at some point. At that point, you get your life back, even though that life may be slightly altered from before. It's all about learning to manage things better. Seeing the patterns and working with them rather than pushing through them is the first step in getting there. I also had the same thing happen with the heart arrhythmias. They disappeared when on steroids, and only come back with flare ups. Cardio says no structural cause for them, and he looked at everything.

Photomama, it really stinks when something so important, and something that brings you and others joy, is affected. I used to love singing, but only in the car alone :-), and now no more. I had an ENT take a look because I was concerned about it being from smoking. There was nothing there. I get voice tremors, hoarseness, and part of my vocal range is completely missing. This started long before I knew anything else was going on. But it was comforting to hear there was nothing sinister going on there. Good luck with your appointment. And thank you for the encouraging words on the PT. I'm really hoping this will increase my endurance. It's the biggest show stopper I have.

Maitrimama, that's complaining? LOL. I grew up in a household like that too, which is one reason why I never had any of this stuff checked over the years. Being poor and lack of access to care helped, too. The one time I did complain to a doc about the fatigue, it turned out to be an insulting disaster and it was 15 years before I ever brought the subject up with another one. And that one I knew I could trust to not misjudge the situation. He's much more objective, and why I stick with him.

In the beginning of this, I never had pain. That is something that developed months after the weekly attacks and started with super painful muscle spasms, and then pain behind the eyes. I'm glad they're looking at the pressure thing and checking it all out for you.

Jskmssss, please be careful with the constipation thing. This is something that hit me earlier this year where things stopped moving for six to eight weeks. The only thing that worked was suppositories for the back end, and milk of magnesia to propel things along. Stool softeners did nothing. Mine needed stimulants, but stronger than coffee, because it stopped working too. My body was no longer telling me it was time to go, that sensation was completely gone. It was a very disturbing problem, but manageable once I found the right combo.

Let us know when you hear back from your neuro. Thanks for the well wishes.

Mareintx, don't worry about the uro, unless you have some extensive testing ordered. Mine just had me go into a container that measure the strength of the stream, and then did a portable ultrasound to measure the retention after voiding. He also did a scope and distention procedure, to check for cystitis because my labs were regularly off. It was a piece of cake. The distention was to increase the capacity of my bladder because of the frequent uri problem. It didn't work.

I'm convinced nobody will dx me because of insurance. They won't cover a treatment for CIS unless you have MRI lesions. Nobody seems to care there have been five more episodes since the original appearance last summer. This is no longer a CIS, so why the delay in trying to treat it? Whatever.

Stalo, how convenient to be close to the famed Mayo. I can't believe you're having snow already. Are you way up north? We have some property up that way and almost never visit because it's too long of a drive. It's maybe an hour away from St. Paul/Minneapolis.

I'm curious, did your first MRIs show anything? I keep wondering why nobody has suggested any follow up MRIs for me. Everyone else gets them. ??? Don't get that.

Okay, so I crashed already after the massages today and yesterday. I had to cave in and take a nap this evening. The house is collecting daily unmentionable items that will have to get taken care of later in little bits. I have fully embraced the fact I will never have a magazine-worthy dwelling. So be it.

I signed up for 18 credit hours next semester. The classes aren't difficult, so I don't think it will be too hard. The only thing that worries me is my mom's health. We don't know what her oncologist is going to do about her treatment. She's been on chemo so long she can't hardly take anymore. We're hours away and I'm worried I might be carrying too many courses for any significant extras that might come along next term. But I want to get this stuff done and get to working before I can't anymore. These choices are so much easier when you're younger.

[jskmssss]

ERIN

Hi Erin,

I can't believe you have been in limbo land for 7 years.
That's an awful long time not to have an answer to what
is going on. I think I will go crazy if I am still going thru this
stuff for another 5 years with no answer. It's one thing,
if you don't have symptoms but another if you have various symptoms all the time.