It's island time - limbo check in 9/20/012

[minivanmama]

Good afternoon limbo island! What a great time to visit the island. Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and sit by the water and enjoy the ocean breeze.

How are you doing/feeling this week? I hope everyone is haveing a good week.

Any doctor appt's this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Any one need to scream?

In island news - Welcome to all our new limbo islanders. I am glad that you found us. Keep on posting and enjoy the island.

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


I am feeling some better today. Well i am off the get the kids off the bus. Lots of (((hgus))) everyone.

[theporcupine]

Hi all,

I hope you are all having a great day, and week. I just sat down in my comfy chair, kicking off a 10 day vacation-yahoo!!!

I finally have my first MRI scan of my head and entire c-spine tomorrow morning, so for me, that is definitely some good news after a long wait. It's on a 1.5 Tesla, but I'll honestly take whatever I can get at this point, lol!

Thanks for allowing me to share and hope you are all feeling well today

[lusciousleaves]

MVM, I'm sorry to hear your remission is over, but glad to hear you're feeling better today.

Welcome, porcupine. Best wishes on the MRI tomorrow. Keep us posted with the results.

I finally got results of recent testing. The protein electrophoresis was unmistakably abnormal, especially in light of fighting something viral that week. The antibodies should have been high and they were low, along with a couple of other blood proteins. The alpha-1 protein level was especially low, along with the beta and gamma.

We're finally getting somewhere. Doc was excited to have a specific finding to point us in a direction. He ordered another blood test to separate out the antibodies. The results should be back in a few days.

He even more strongly feels this is metabolic in nature, could be causing some neurochemical irregularities, and that it won't kill me but might be annoying to live with. Depending on how this next test comes back, I might be off to meet with the infectious disease specialist again.

Abdominal MRI was normal except the lung bases.

Fighting another virus again this week, and another mild flareup along with it. After a blockbuster day yesterday, I'm taking a back seat today in life.

[MinnieGirl]

Hey Everyone

I hope you all have had a good week. Temps have gotten cooler here and for a couple of weeks I felt better. Now my symptoms are back with a vengeance. Like, right now it feels like someone is beating the second toe of my right foot with a hammer, right hand feels like it's burning.

Neuro's office called and said they want to see me on October 2nd; that they have the results of the MRI of my c- spine I had done earlier this week and there are significant changes from the one I had a year ago. I confess I looked at the disc but honestly couldn't tell much of anything.

Well, I'm going to try to get some rest, make it through work tomorrow (Happy Friday!) and enjoy a weekend of great food and football.

Take care,

Hugs,
Minnie

[FourPaws]

I'm struggling with my left leg a lot. Was pretty much dragging it after me at the end of my shopping trip today. It's numb and heavy and doesn't feel like a part of my body.

Also my nerve pain is still screaming along. The trigeminal neuralgia is driving me a little batty, especially since it's now bilateral. I've even got every bit of hair pushed up and pasted back and it still nails me. Even a tear will trigger it. I'm maxed out on my carbamazapine so I've got to just live with it. I can't imagine what it would be like without that. Eeee. Glad that it is being treated.

However I did get some great suggestions from the MS society here and I'm going back to the PCP in a week with what I'd like to do from here. He's said he'd refer me wherever I'd like, so I'm feeling very lucky to have him. So the ball is in motion again - hopefully they'll figure some stuff out, ms or not ms.

Working on my mind over matter stuff, calming and meditation. So glad that I've got these tools. Best wishes to everyone.

[baydenoc]

So Depressed

I am struggling so bad. I am losing my ability to walk. People ask me to go places but I can barely walk around my house.

I am sitting here crying feeling sorry for myself. I just want to know what is wrong. I feel like my body is slowly dying.

A year ago I was working, now I just feel isolated from life. I just pray God will give me answers soon.

[FourPaws]

Baydenoc - I really feel for you. It's very isolating.

Is there any way you can utilize a wheelchair or a similar device? Even undiagnosed, borrowing or renting one may be worth it just for the ability to get out and about to help combat your depression.

[baydenoc]

Fourpaws

I wouldn't be able to use a wheelchair as I couldn't use it alone. To get it in the car. I put my walker in the car. I am weak and spastic.

I am scared I have something like ALS because it feels like I have gone down hill in the past 2 years really fast. I have never said this out loud.

Would the Neuro be able to tell this sooner than MS. Maybe I am reading too much.

[gowiththeflow]

Hello minivanmama and all others in Limbo land.

My login says it has been a mont hsince i was here, but I suspect the internet gremlins are messing with my cognitive abilities? Yes, that's it. Gremlins!

Still looking for the right neuro, from there getting in when hubby is able to drive me an hour away and off work! 5 minutes to run an errand is about all my hands and arms tolerate on a very good day. We could have the car fitted with foot controls, but, ummm NO! The Spazzies have overtaken my good foot and leg too!

Anybody else have leg feet Spazzies that make them waddle and destroy their shoes? Am beginning to think I should dig a hole in the yard to give them a respectful farewell, and plant something like a nice this is NUTS tree on top.

Not complaining though. Counting blessings instead. Finding work arounds diagnosis or not. Life happens, and i am determined to thrive no matter what else is thrown my way. I have lived over 25 years with periodic episodes, just because it's accelerating now, doesn't mean I will choose anything less than living as well as possible. Different and challenging, oh yes.

Last 2 weeks hubby has been around more, so he has been subjected to my often yelled fav 4 letter word when i bump into, knock over, drop, trip, or break something. And to think, I was doing so well at shrugging this off so he wouldn't get too concerned. Cat's out of the bag now, don't think it will crawl back in there. She just better not go get pregnant, i don't know nothin bout birthin no kittens.

Yep, jury is in, I'm a closet book writer. thanks if you got this far!

may everyone have hope, joy and love each day! ~ Flow

[lusciousleaves]

Not a positive post . . .

I have this compulsion, I'll admit, to doing a lot of research on things while waiting on test results. It's how I pass the time. While the dust collects on the furniture, and my belly growls from delaying eating, I click away on the keyboard, plugging in one search term after another, gathering as much info as my wee brain can handle at once. Call it OCD, an addiction, whatever. It's always been an interesting and informative undertaking, no matter what the search involved. It's how I roll. There is no changing it.

Now, on the other hand, I'm wishing I didn't have this compulsion, this need to know and understand things in depth. It's making me sick. What I'm finding on this latest test is making me sick, nauseous sick. I think I'm on the verge of throwing up for two days, kind of sick.

An MS dx I could deal with. After two years of no having any other indication (that I was aware of) it could be anything else, I had grown somewhat comfortable with that possibility, as much as one can be. And while I'm not minimizing the suffering of people with MS, because the suffering is real and sad, it's not potentially fatal except in rare or severely advanced cases.

The more I drill down and review my past lab results, the more I see there have been clues all along. The clues go back five years in my blood labs, but recently took a turn and became more obvious.

I'm certain my doc is screening me for multiple myeloma, or some other paraproteinemia. And while the fact one didn't show up on this last test is good, it could still show up on the immunofixation. And if it doesn't show up there, it could show up in a urine protein electrophoresis. If it doesn't show up there, I can breathe a sigh of relief.

He's been suspecting this for awhile, and frequently asks me about bone pain. There are good things about my blood labs if this is the case. I get the feeling, though, that he feels we've pegged this.

[baydenoc]

lusciousleaves

I can feel your anxiety. I am keeping you in prayer. I hope your Dr. is going down a different path in his research for a diagnosis for you.

Baydenoc

[lusciousleaves]

Thank you, Baydenoc.

I'm some better today. The immunofixation came back negative for the proteins. I'm not sure where we go from here.

[gowiththeflow]

Not a positive post . . .

I have this compulsion, I'll admit, to doing a lot of research on things while waiting on test results. ..... It's how I roll. There is no changing it.

I'm certain my doc is screening me for multiple myeloma, or some other paraproteinemia. And while the fact one didn't show up on this last test is good, it could still show up on the immunofixation. And if it doesn't show up there, it could show up in a urine protein electrophoresis. If it doesn't show up there, I can breathe a sigh of relief.

He's been suspecting this for awhile, and frequently asks me about bone pain. There are good things about my blood labs if this is the case. I get the feeling, though, that he feels we've pegged this.

lusciousleaves, consider yourself warmly hugged. I do not know what is more difficult, to hear "we don't know" and get bounced from doc to doc, or to finally have a name to put to what is making life more challenging than you could have ever thought possible.

In my book, information, real knowledge, is empowering. I have been known to do what you do before a procedure or test esp, or if no one takes the time to explain say blood work results.

It isn't all bad as we are able to ne informed advocates for ourselves, as well as know what questions to ask, and be an integral part of our care team. I insist on that - we allwork together, or goddbye, your fired and replaced by a more understanding health care pro who is called to heal, and gets my need for caring for body, mind, and spirit as they are the whole of me.

natural born researchers, life long learners, inquisitive bright minds are not an issue in my book! That said, please don't be so hard on yourself, but maybe set a timer, and take a break so you can feed your body good wholesome foods, and maybe shower now and then before the buzzrds smell something and start circling? works for me. not one peck mark on me yet.

whatever your diagnosis turns out to be, make the best life possible for yourself. Find your joy and live it. Do what makes you happy. surround yourself with positive caring people. You deserve no less!

[gowiththeflow]

minivanmama, i hope the days since you opened this post find your faring better? flare ups - stink. relapses for those who have them can be scary. you are in my thoughts.

and btw in case you don't hear this, thanks for what you do here. means alot to so many, including me.

[alishape]

Minivanmama, where are you?

I do most of my posting in the newbie lounge, but I read the limbo landers posts almost everyday too. I'm almost a limbo lander myself. I'm not quite sure my doctor knows who I am really. The last time I saw him he told me I definitely have MS. I am not sure how he came to that conclusion since I haven't had any testing done since the last time I saw him. At least not any that I remember. My girlfriend says I have, but what does she know? Then he said he didn't want to call it MS and does it matter what we call it and put me on copax. Just in case, I assumed.

Anyways, I certinly did not mean to ramble on so. How are you feeling? I'm still thinking good thoughts for you. I'm fixing to go on vacation this weekend, (something I'm slightly apprehensive about cuz it's a cruise to hot places), and I have been spazzing out a little about it. Not about the prospect of hot humid places, but I can't remember anything so packing has been something serious, lol. As long as I have my bathing suit I'll be good.