Calling all limbolanders-limbo check in 8/3/2010

[minivanmama]

Good afternoon limbo island. It's time to limbo! The sun is shining and the water is great. If you are undiagnosed then this is the place for you. Come and tell us your story.

I hope everyone is haveing a good week and staying cool. I know the past few weeks have been crazy for many of us. I hope this week is a better week. How are you doing/feeling this week?

Are there any doctors apt comeing up? Any test this week? Any doctors or nurses that need to swim with the sharks? Remember the middle of the island is the place to scream if you are at the end of your rope. Remember that you never scream alone. Also don't forget the punching bags hanging from the trees. It is a great way to relive stress.

In island news - I don't think there is any island news this week.

Well 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.

To tinymommy - Good to see you. I know the feeling of not wanting more test. It does get to you after awhile. I hope when you are ready that you find good doctors that will not dismiss your symptoms. (((((hugs)))))

To lily09 - You are not crazy. I am sorry that your mri and lp did not give you any answers. Just see what the doctor has to say. Then you can think about your next step.

There is someting going on. It just takes the right test and time to find the answers. Keep posting and know that we are here for you. (((((hugs)))))

I am off to nap in my hammock. (((((hugs))))) to all and i will check back later.

[artteacher]

I have not posted here for awhile because I thought I did not have any changes and did not have my next MRI scheduled until December.

Life changed that. I found myself in the ER Saturday evening after being sent there from a walk in clinic. Friday night I had tingling/prickling throughout my body with constant tingling of my feet and lower legs. It is hard to sleep when your body keeps jumping because it feels like bugs are biting you everywhere. They did blood work and CT scan. I was given a prescription for Neurontin. Not sure I like it--it works for the prickles but makes my extremely sleepy. I am now scheduled to have a MRI on Wednesday (my 3rd in 11 months).

Once again I pray that it shows something new so I can get off this island.

[lily09]

Me too

Me too. I had hopes for finding out something, anything, that would tell me what is going on with me.

We'll see what the doc says when she calls me. I did put in a call to her...

[Shandi]

I might as well join the party, but I am hoping DH will have a speedy DX once he gets to the neurologist in September.

Three ONs, temporary taste loss (or smell?) for a month, numbies/tinglies in the hands here and there, burning feet, and left side of body numbness/warmth. Also some fatigue going on that *I* think is excessive. It's either that or narcolepsy

MRI went from none to one to way too many lesions over the course of several years.

This week I have been looking harder at MRIs that typify MS and they are identical to his in shape, placement, etc. Have also been looking at medications.

I am praying that I will not flip out if the neurologist doesn't follow the plan I have in my head. He has been tested for mimics three times already, so if I don't hear medication talk I might flip out. Okay with getting the LP and a c-spine...but it's time to get on to business.

I am a bit whiny because DH is the able-bodied person. Son's a T1 Diabetic, and I have RA with my fake joints and was just hoping DH would be our healthy one that doesn't require expensive tests and medicines...and more doctors! BAH!

Point me to the fruity drinks and the hammocks! Hope I can take a quick siesta and move out of here.

[minivanmama]

Artteacher - Good to see you. I am sorry that you have been feeling bed. I hope that your MRI will give you some answers and then a DX.

I know you are ready to get some answers. Give the neurontin some more time. It can take a while to get use to it. I take neurontin and it did make me sleepy till i did get use to it.

Let us know how your MRI goes and keep posting. (((((hugs)))))

Lily09 - Good to see you. I know you want answers. Just hang in there and see what the doctor has to say. I hope that you hear from him soon.

Let us know what he had to say. (((((hugs)))))

shandi - Good to see you. I am glad that you droped in. You and your DH are can stop by anytime. This is a great place to get support.

I hope your DH will get some answrs. I hope your neuro will not have to do extra test to get you answers. I know it must be frustrating to be getting the run around. Just know that we are here for you anytime.

You have a lot going on bless your heart. I hope your DH will get to feeling better and that your family will feel well also.

Enjoy your drink and your nap. (((((HUGS))))) and welcome to the island.

Well good night limbo island and sweet dreams. I wil tell you what is going on in my world next time i check in. I am to fatigued to right now. (((((HUGS))))) to all.

[lcalex2]

Hello all!

I've posted a few times but i'm still kind of new here. I've been trying to take a break from anything medical related for a while! But I just got news that I figured I should share and see what you all thought about it!

My neuro sent me to see a rheumatologist, which I saw yesterday. We've been working with a diagnosis of MS or Lupus. Migraine Variant for the vertigo is still a possibility, but not as high up as it once was, since I haven't responded to any treatments for it.

Well the rheumatologist ordered all new blood work since mine is from last year. Looked at all of my records and spent about 45 minutes listening to my symptoms. Once I was done she seemed kind of dumbfounded for a second and then she said she was sorry that i'd had to put up with all of this. I was blown away!

Anyways, she said it's not Lupus. She ran some more tests to be sure but my symptoms don't add up to it. She said it's neurological, and that my neuro seems like he's done an excellent job on my work up and to stick with him. She's going to put in the letter she writes back to him that she thinks this is MS and that the next steps would be a repeat MRI. She also said I should try a steroid and see how that works.

So I guess my head is spinning a little. I'm glad she didn't think I was crazy! I see my neuro again in December, I dunno if he'll wanna see me sooner after he gets her letter or not. What will the steroid do?

Anyways, that's my story of what's been happening the past couple of days! Sorry it's so long! Hope everyone is doing well!

[Shandi]

lcalex...don't you love when you have doctors that listen to you and do not think you are nuts??

I went through several doctors before getting my rheumatoid diagnosis.

I went back to work 4 weeks after having my son. the following day I was unable to move from the bed; it was like a RA switch was turned on in my body overnight. The first four doctors said I had postpartum, and one even said I was doing this to get attention away from the baby and on to me!

The problem is I had pain, but no classic RA swelling. It took over a year for me to show symptoms. That is when I got a doctor's attention...hard to fake that. Was unable to work after only 3 years; mine was really aggressive. Don't know if that year of no treatment would have made a difference but I get mad thinking about it.

[minivanmama]

laclex2 - Good to see you. I am glad that you went to see a rheumatoiogist. I am glad that she spent time with you and ruled things out. I am glad that she is writting your neuro.

It sounds like you are on the road to finding answers. I hope your neuro will call you and talk to you. The steroids will help with calming down your sx and help you feel better.

I know you must have been in shoked when she did not blow you off. She did a good job and i am glad that she helped you rule thing out.

Keep posting and letting us know how you are doing. (((((hugs)))))

shandi - (((((hugs)))))

Shashi - I have been thinking and praying for you today. I hope you are recovering well. (((((HUGS)))))

I have a apt on friday at 2:30. I am hopeing that the doctor will be able to tell me what is wrong with my right arm and sholder. I have little feeling in my arm and pain in my sholder and neck. The arm is week and keeps falling asleep.

Good night limbo island and sweet dreams. (((((hugs))))) to all.

[Jelmo99]

Been busy week (long sorry)

Not for myself, but for taking my mom to her appts.

Finally today was the last one for now until next week. As you know, she fell again last monday (26th) and was in ER. Her knot on her head is going down, but still very much there. The bruises look like she is a prize fighter and she lost. Today found out she did break her wrist, and is now in a cast.

But yesterday (Tues) was a horrible day for me. On the way to her house (25 min drive) I got stuck in a traffic standstill because of a wreck. Sitting with van engine off on a street where I could not go anywhere else (and my van has no AC so couldnt keep it running anyway). Windows rolled down, and sun beating me from the drivers widow. I was sweating like a stuck pig.

I finally found an umbrella, and opened it in the van and placed it in the window for shade. Although this did block any breeze coming in the window. (I cant imagine what the guy behind me was thinking). I sat there for 30 mins, dying.

finally when we were able to move, I started the van and went about my way. I had my left arm propped up on window ledge and all of a sudden it started shaking uncontrollably. Not just twitching, but bouncing. A few mins later at the base of my skull, I got this "swirling, bug like crawling" sensation. And started to get lightheaded like I was about to faint. Then my left leg got the pins and needles. I had to pull over on the freeway shoulder to calm down before driving on. I didnt wait to long because I was afraid I wouldnt be able to continue.

I get to where her appt was and instead went to Walmart gas station and bought a bottle of cold water and a pepsi. I got to the van and drank half the bottle of water instantly, and poured some of it down my back. I didnt care what it looked like to others, I knew I was overheated. People were looking at me like I was nuts, but I didnt care. I was panting like a dog. I got to moms drs office and my sister said...YOU dont look good are you okay? I said I would be in a min, the nurse was taking moms vital signs. She looked at me and asked, "can I take your BP?" I chuckled and said... no need, I have MS, and was stuck in traffic for 30 mins in the heat without AC, just give me a few mins. She did, and while waiting for the dr to come in I was feeling better.

Get this... I was pulled aside to discuss moms decline without upseting mom. Her PCP told me "I believe your mom also has MS, but at this point (with age and alzheimers) treatment wouldnt help her it would only cause her more discomfort." I told her I believed that to be the case for a long time now...since mom and I mimic eachother in many symptoms. She also said, we might need to consider placement in the future, because "you all" (me and my sister) cant do it all ourselves, but that she is reluctant to place her somewhere because "I know she will give up, and stop trying to live". So it isnt just us in fear.

So that is my week so far, and I hope the rest of the week has several naps waiting for me. Sorry so long, especially since I am no longer an actual Limbo-er.

[jsoxfan618]

Hi guys,
Good to see you all. I remember reading last night in the Chatroom that someone got off the island, but I can't remember her name. Sorry, my memory isn't to good lately.

No news here except to say it has been a tough week so far physically. The muggy weather has crept back in and it doesn't help at all. Some new symptoms have popped up too. Like a cold sensation on the inside of my fingers, and stiffness in my neck and i seem to be getting dizzy a lot. Weird? No doc appointments. Still waiting to hear back form my PCP regarding the Western Block Lyme's test.
Anyway, I hope all is well with the rest of you.
-jsox

[jillmb]

Still here...

Hi everyone,

I'm still hanging out just waiting for some answers! I am actually doing a 48 video eeg test right now till tomorrow. I have an appt. with my neuro next tuesday to go over all of the tests I've had over the past couple of weeks.

Thanks to Jenny3838, I have come across something that is really similar to what I am going through, it's called "Paroxysmal Kinesigentic Dyskinesia". I have printed out 4 articles about it and will bring it to my doctor and see what he says. I hope he has some answers for me, I can't go on like this for much longer!

Thanks for listening and best wishes to everyone here
Jill

[zuzu20]

Hi guys iam back from holidays...

hi guys I am here. I was away for most of July then My computer was down I couldn't get on line for at least a few weeks. arg. but Up and running (the computer that is.) Me not so much. lol. well I been home now for about two weeks and I finally, FINALLY get an app for a Neuro YEAH.... It's been 6 months in waiting. And I only got in sooner because I was put on a cancellation wait list I would have waited another 6. whew...
Well I just got back from a two and a half hour visit with her she spent a great deal of time with me very though (sp) did all sorts of tests.
My right leg is weaker then my left and I don't have as much sensation as I should have. I did the toe heal walk well not really couldn't fell over or had to hold on to her or the wall. She pushed me around on one side I nearly fell over the other sides were fine.
So now I am on a wait list to have a full MRI scan She dosn't think its ms but she not going to ignore it either. (thank goodness) She'll do the testing but says I don't have all the halmarks of MS some but not all.
So we will wait till we get and MRI now a years wait :O I guess is the next step. I had a great July I was getting around pretty good went to the Lion king musical and loved it. It was for my 40th birthday what a great way to spend it. I'd see it again in a heartbeat. I been getting around with a walker but only to have some where to sit. I get annoyed with it but it gives me a seat at least.

[minivanmama]

jelmo99 - Good to see you. You have had a busy week. I hope you can get some naps in and feel better.

I am glad that you were ok after your overheated. I am sorry your mom has broke her wrist but i am glad that they are takeing care of her. I am glad that the doctor told you about the MS. I am glad that she did talk with you and the two of you are worried about the same thing.

I am glad that you came here. We are here for you any time good or bad. Don't feel bad that its long. It is all ok.
I hope you can get some rest. (((((hugs)))))


jsoxfan618 - Good to see you. I don't remember hearing about someone getting off the island. I understand the memory thing. I have the same problem.

I am sorry that the heat is getting to you. I hope you get to feeling better and that you hear from your pcp soon. I get dizzy and i get the stiff neck also. I hope that goes away soon.

(((((hugs)))))

jillmb - Good to see you. I hope you get some answers soon. I know you have had a lot of test the past few weeks. I hope your neur will give you some answers.

I think that is good that you are takeing that info to your neuro. Let us know how your apt goes. Just keep hanging out on the island.

We are here for you and i hope you don't have to wait to long on answrs. (((((hugs)))))

zuzu20 - Good to see you. I am glad that you had a great holiday. I am glad that you went and saw the lion king. It is good that you were getting around in july.

It is good to hear that you got to see a neuro. I am glad that she spent all that time with you. I am sorry that you have to wait so long to get a MRI. I know you are glad that she is takeing the next steps.

I hope you get some rest and that you get back on your feet soon. I am glad that you have your walker i know that getting around with it can be a pain but it does give you a seat. I have a wlker with a seat also so i know where you are comeing from.

(((((HUGS))))) and it is good to hear from you.

Well good night limbo island and sweet dreams. (((((hugs))))) to all.

[Shashi]

Hi all,

Just wanted to pop in and share the great news that my breast biopsy that I had yesterday (Wednesday) is negative! I got the results this afternoon (Thursday). Evidentially, they rushed the test through (it was supposed to take three days), but thank God, I do not have cancer.

And thanks to those of you who were praying for me. I appreciate it more than you'll ever know.

Love and hugs,

Lisa

[mjan]

Hi all,

Just wanted to pop in and share the great news that my breast biopsy that I had yesterday (Wednesday) is negative! I got the results this afternoon (Thursday). Evidentially, they rushed the test through (it was supposed to take three days), but thank God, I do not have cancer.

And thanks to those of you who were praying for me. I appreciate it more than you'll ever know.

Love and hugs,

Lisa

Amen ~! God is on your side...

Jan