calling all limbo-landers limbo check in 6/5/2012

[minivanmama]

Good Evening limbo island! It is sunset on the island and a great time to grab a hammock and relax and watch the sun go down. So grab a cabana boy or girl and order something to eat and drink. Then tell us how your week has been.

How are you doing/feeling this week? I hope the week has been good so far. I hope everyone is feeling better and being careful out in the heat.

Any doctor apts 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 - be careful out in the heat.

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


Well i am off to rest. This is VBS week and my fatigue is getting the best of me.

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

[JayEm]

Have fun with VBS!

Nothing new medical for me, but I had fun at a concert this weekend. The weather had cooled down, which was good because the concert was in a church, and they couldn't get the air conditioning working. I over-exerted (the performer had pretty much everyone dancing in the aisles a couple of times--I had to sit down for most of it, but I was still clapping and moving around a lot). So I've been pretty exhausted since then, but it was worth it!

[minivanmama]

Hi everyone I am getting out of my hammock to say Hi after a long day a VBS. Boy am i fatigued today.

My kids and i are haveing fun so i have the weekend to rest and get ready to go to out of town with the family on monday.

JayEm - Good to see you. Glad that you had a good time and the weather was cool. That worked out well.

Get your rest and lots of (((hugs)))

Well i am off to my hammock for the night. Good night limbo island and sweet dreams. Lots of (((hugs))) everyone.

[tambrown]

Hi, hope. EVERYOImNE IS WELL. Here I'm w.ting to hear from my neuro. Im not feeling very well alot of msI'm typing on my phone so forgive me for typos
If I felt better I'd be happier. The weakness, dizzyness staggering wetting bed sex forget it fatigue headspikes. Thanks for listening. Tammy

[MandaPanda2888]

New Limbo Lander here

ey all
Im Amanda. Im 24 and a single mother to a one year(well almost 2 year) old. I have just found out today I may have MS I am getting a spinal tap done next week, I have an inflamed area on my c-spine. I have had numbness and tingling in my right arm and thumb index and middle finger for about 4 months now and general arthritis like pain in both hands(been checked for arthritis and carpal and is niether) I also have a lot of tingling in my right shoulder as well. General aches and pains. HORRIBLE HORRIBLE headaches almost daily. No lesions on my brain though.

[jess123]

Newbie

Hello everyone!

I am new to this community just signed in today. I have been watching and reading a lot of posts recently and decided it was time that I get involved with People who may understand what I am going through.

To be honest I am very afraid about what may come next.
I will be 28 years old this coming Friday and I have two children.
This all started In 2006 in my third trimester of pregnancy. Throughout my pregnancy I was experiencing horrible cramps in my legs and shooting pains, my obgyn said that this was. For women normal who are pregnant.
One day while I was at work I got the worst migraine I had ever had In my life. I can't even. Elgin to describe the pain I was in.
The next morning I woke up completely blind in my left eye. I was freaking out and call my family doctor right away. He did my blood work and. Priced my b12 was low so he had me come in once very few days for b12 shots. He also had me to some eye test at the hospital. The next day when. Went to see him he said that I had optic neuritis. At this point I was going out of my mind...
A week later the bottoms of my feet became tingly and numb, and by the end of that week the numbness had travelled to my whole body excepr for my face sand chest. At without much explanation my doctor referred me to the MS clinic. I was so confused at the time I was 22 years old I thought I was going to die!
A few days later I could not walk or hold anything for long, I also could not use the bathroom so I went to emerge.
I was admitted to the hospital for an MRI that I had the next day. The neurologist told me that I had leisions on my spine that were consistent with an MS attack and that he was thinking of starting me on steroids. I thought that was the worst idea in the world so I said no. I had. O idea what it would have done to my unborn child and I wasn't talk g any chances. Every morning at the hospital I would try with everything that I had to walk with a rollaider. By the third day I could make it to the end of the hall before I had to sit.
On the 5th day I checked myself out of the hospital as I was determined to make myself better without steroids. I had a small child at home who needed me.
About a month later my eye sight fully came back and I could walk again!!
Six months later I finally had my appt at the MS clinic. And they ordered another MRI (I was fine at this point). I also had evoked potential done on my eyes. The MRI came back inconclusive as well as the EVP. I was so happy I chalked it up to a freak pregnancy thing and went about my life.
Last year (5 years later) the pins and needles came back, but it wasn't horrible my doctor sent me back to the MS clinc I had another MRI which again was inconclusive. Oh yeah... After the first episode I was supposed to go for follow ups but I never did. I figured if I can't feel it's. It there .
Last week things started up again, only this time there Are a lot of new things happening. I am being shocked all over my. Body, leg cramps that are bruising me, balance issues, and extreme fatigue...oh and burning in my legs.
The first time this happened it was like a punch in the face now it feels like by body is saying "don't forget about the intruder"!
Needless to say I'm am going back to the MS clinic. I'm so frustrated with myself and I'm afraid of what's going to happen. Ext with my body and with the doctors.
Does this sound like MS or something else that could be going on?

[MandaPanda2888]

WELCOME JESS!

HI JESS! IM 24 MOTHER TO ONE. I JUST FOUND OUT YESTERDAY. FEEL FREE TO MESSAGE ME IF YOU NEED ANYTHING.

[jess123]

Thanks Manda!
I do have a question or two for you.
1) how did they diagnose you? Was it through MRI or based on your symptoms?
2)how long did it take for a dx?
Because I have had nothing huge happen for six years now, Some minor things here and there but nothing like the first time.

[lusciousleaves]

Hi MVM, JayEm. Welcome newbies! I have no words of wisdom or comfort for you today, other than to say that we do know how you feel. Still playing the ever crashing Superwoman here. She flies, she crashes, she flies again.

Finally got the dryer replaced. Had a fun little episode of balance issues while trying to hang clothes on the line. Every head turn had me lurching toward the side doing the grapevine. Between that and teetering around up the stairs carrying that heavy, wet laundry on my shoulder, banging into walls, doorways, furniture, I decided that was enough of that.

Hubs was outside with me during the worst of it and I looked over at him and said, "I'm not doing this anymore." Came inside and got serious about doing some research and found a model that washes and dries, cutting the number of trips I have to make up and down the stairs in half. It's also ventless and runs on a standard wall outlet, so if ever the day comes I can't get up and down the stairs, it can be moved to a better location for me. Woo! Hoo!

I used to love hanging the clothes on the line. Not so much anymore.

Still have some seedlings to get in the garden, some irrigation to set up, and some more mulching to do, but it's all coming along nicely. Thrilled to be doing this again.

MVM, enjoy your VBS and rest up when it's over. I'm keeping my son home for the summer and we're having a great time. It's just begun. JayEm, I envy you your concert experience. It's been decades since I've been to one. Thanks for the reminder of how much fun they can be.

Hang tough, limbolanders. My new method is to call the doc with anything new and bothersome and wash my hands of any worry after hanging up. I'm sure he'll call if anything can be done and it's something serious. If not, either way, I've got to roll with the punches. It is what it is.

[MandaPanda2888]

Jess

Have not been dxd yet. So I can't tell you. I did get an MRI with contrast my brain was normal but my cspine was inflamed. I'm getting a spinal tap on Tuesday. I'm hoping that will be enough to offer some hope of a dx of SOMETHING because I'm in a lot of pain and want to treat it badly. The headaches are usually the worst lately they haven't been as bad but usually they are horrible. I heard some dx are quick and some take years. I guess it just depends on how many symptoms you are exhibiting. Ms symptoms have many many other diseases they can fit to as well. I would tell you not to worry until you know but I know I can't do that. I reccomend going to chat room here. The people are so nice and helpful. You can ask as many questions as you like. best of luck Jess! Btw the chat room is ALL CAPS for people with vision problems. Good luck and take care!

[JayEm]

Came inside and got serious about doing some research and found a model that washes and dries, cutting the number of trips I have to make up and down the stairs in half. It's also ventless and runs on a standard wall outlet, so if ever the day comes I can't get up and down the stairs, it can be moved to a better location for me. Woo! Hoo!

I used to love hanging the clothes on the line. Not so much anymore.

I miss line-dried clothes, but had to give it up due to allergies. I'm hoping allergy shots will make it a possibility again... we'll have to make sure to run the line towards the neighbor who is less fanatical about mowing his lawn.

My hope with line-drying is that we'll be able to run it from the porch, so I can slide a basket from the washer to the porch and not have to lift anything. I could even use the wheeled cart, because there's room to navigate it to the back door.

Still have some seedlings to get in the garden, some irrigation to set up, and some more mulching to do, but it's all coming along nicely. Thrilled to be doing this again.

I'm glad you're managing that. I'm working on keeping a couple of strawberry plants and a couple of basil plants alive on the porch. We're starting a few fruit vines in the yard, but those are pretty much on their own. Fortunately, we haven't gone more than about two days without rain since we put them in, so they haven't needed to be watered.

I'm keeping my son home for the summer and we're having a great time. It's just begun.

So glad you guys are having a great time! I hope you can find lots of cool things to do together (in every sense of those words).

JayEm, I envy you your concert experience. It's been decades since I've been to one. Thanks for the reminder of how much fun they can be.

Depending on the kind of music, there are a lot of concerts that are accessible, and not too crowded, and not too expensive. I encourage you to go see some live music if there is some near you.

I was, well, *near* some live music today. There's a festival in our town, and various folk musicians--including Pete Seeger--performed. But it was the first hot day in weeks, so I had to stay in the shade by the river. So I sort of heard some of the music, but I didn't get to *see* much of it. Even so, it was good to get out of the house, and I love living somewhere small enough that I can go out for an hour or two, and it doesn't exhaust me getting there or getting home.

I am sometimes disappointed about the fact that moving out of the city didn't seem to make my health better, but at least it means I can focus my energy on doing fun things, instead of spending it all trying to get around!

Still pretty much on a break from medical appointments, but I'm feeling very hopeful about the allergy shots: I spent several hours today in a very grassy area, and the pollen counts were medium-high, and I'm still breathing well and my face isn't itching. This wouldn't have been a possibility last year! (Last year, I could spend about 10 minutes outside before I had to retreat to filtered air.)

[thewildrose]

So happy to have found you

on the night before my LP - I'm starting to freak, just a little - it's not really my style.

Dr left a message stating she will not release me to go back to work at the end of June (been on FMLA since April 24 and FMLA is almost up - in addition to I've been told by coworkers they've already hired someone else in my position)

Bank refused to refi the mortgage so we can afford to stay in the house if I lose the job

And it's raining pain, pain, wiggles, pain, fatigue, tremors, spasms, pain - I've been dealing with all this on and off for 12 years - and my MRI is clear ??? What in the world is wrong with me?

Happy to meet you all

[JayEm]

I'm sorry to read about all of your difficulties, Thewildrose. I hope that something gets better soon--it sounds frustrating and overwhelming.