Calling all limbolanders-limbo check in 11/23/2010

[minivanmama]

Good morning limbo island! It's time to limbo! The sun is shining and the water 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. The island is waiting.

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

Are there any doctors apt this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Don't forget that if you need to scream the middle of the island is the place to go. Remember that you never scream alone.

In island news this week - Have a Happy Thanksgiving.

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


To Autumn934 - Sorry it took so long to get back. Thank you for your kind words. I am sorry that your MRI showed more OA changes in your lumbar spine. Bless your heart.

I have OA also and i am 36 i was dx i when i was 32. I know it can be a pain to deal with.

I hope you hear from SSI soon. I know you have been waiting. Keep on posting and know that we are here anytime you need us.

I hope you are doing good and feeling better. Lots of (((((hugs))))).


Well my kids are out off school all week. It is good to have a break this week from school and other activities.

My fatigue is bad right now. So i am takeing thing slow whis week. So i am off to nap in my hammock and i will check back in later.

Lots of (((((hugs))))) everyone.

[minivanmama]

Good afternoon limbo island. sorry it took so long to get back. I have been busy getting my home ready for company.

I am going to get in my hammock and take a nap. I hope to see others soon. I hope everyone is haveing a good week.

Lots of (((((hugs))))) everyone.

[nana-anne]

Possible ms, No way it's ms.

Hello! What a day!

I went to my new neurologist appointment yesterday and am still trying to recover from the depression, shock and bad feelings inside. This has happened the three times I have been to neuros in the last 3 years.

Went to the ER with stroke like symptoms (unbalanced walk, right leg very weak, tinglely hands, nystagmus, etc.) a week ago. The CTA and MRI were normal so they wanted me to go to a neurologist. Went on Tuesday, after giving me the standard neuro tests, all were normal of course, except for Romberg test was positive. He says this was caused by a virus, he doesn't know why, but it happens sometimes.

Too make a long story short the new neuro doctor said there is no way I have ms.

I have been told by my PCP, Pulmonalogist and Epstein Barr doctor that I have possible ms. Even though I have had two normal MRI's in two years. All the symptoms, but no lesions. At least a progressive neurological disorder.

My PCP was glad I was going to the neuro because he hoped he would give me a LP.

Anyway, here I am again, having symptoms that have caused me to retire early on disability, change my and my husband's life style greatly and basically not be the person I was 2 and half years ago, and I still do not have the answers I need or want.

Last neuro doctor I saw (sent there by Epstein Barr doctor) said it was all fibromyalgia, this neuro doctor says it's all Epstein-Barr and my other doctor's (not neuros) say I have some kind of autoimmune that's neuro related, possibly ms, including the Epstein Barr doctor who says he is worry about the neuro symptoms I am having.

Sorry for such a long rant, i probably even repeated myself, but I have a little more to say. Is this limbo island? or should I not be joined to the ms message boards anymore?

The new neuro is having Thanksgiving dinner with my PCP tomorrow (go figure!) and said he would set him straight on having ms without lesions. Oh well, my next PCP visit should be fun.

The neuro is having me come back in three weeks, what for I don't know but I will go just to see.

Thanks for listening. Have a great Thanksgiving!!! I plan to!!!

[jsoxfan618]

HI Minnivanmama, Sorry you are feeling fatigued lately. The fatigue has hit me hard lately too. Yesterday I volunteered to help out at my daughter's pre-school. They were making "Turkey Soup." As it turned out I was the only parent to volunteer, so they asked me to help out in my daughter's classroom and in the kitchen serving and washing dishes for all the kids. I didn't mind doing it, but it sucked all the energy out of me. I felt bad for my daughter because when we got home all I did was serve her lunch, then turn on the tv and crash on the couch. I don't usually fall asleep, but this time I did. If it wasn't for my wife calling at 2pm to say she would be late getting home I would have never made it to work.

Nana- Welcome. It sounds like you have gotten the run around. You are definatly welcome here. I hope your docs are able to get their heads together. I have had Epstein- Barr syndrome thrown around as well. Its not easy. Hang in there.

As for myself (besides the fatigue and other symptoms) I am counting down the days and hours until my second Sleep study. Its supposed to happen this Friday. They say I have mild to moderate sleep apnea and this time they are going to fit me with a C-PAP machine. I'm hoping it at least helps with the fatigue.

Well that's all from me.
Happy Thanksgiving everyone!!!!

[minivanmama]

nana-anne - Good to see you. I am so sorry that your apt did not go as planed. I know that it is hard to go to the neuro and things not go well.

You don't have to leave limbo island. You are still in limbo and need the support of others who are looking for answers.

Bless your heart that you are getting the run around. It is so hard to feel so bad and have no one giveing you some answers. I hope all your doctors will get on the same page and put all of this together. It is all so frustrating.

I agree that you should see what the neuro has to say when you go back. If he is jsut not helping you find answers you may want to find a new neuro.

You don't have to worry about venting or it being long. That is what the island is all about. We understand how hard it can be. Just keep posting anytime.

Have a good Thanksgiving. Lots of (((((hugs)))))



Well i am off to bed. Good night limbo island and sweet dreams everyone. Have a happy thanksgiving. (((((hugs)))))

[nana-anne]

Thank you minivanmama,

I would like to stay! and I think am going to now. My PCP has said in the past 2 years that this might be a very long road to a definite diagnosis. Seems he is right.

jsoxfan618---I just had a sleep study because my pulmonologist was concern I might not be getting enough oxygen at night from my weak respiratory muscles but I am getting enough that I don't need the C-PAP machine. I know people that the C-PAP machine has really helped though.

[minivanmama]

jsoxfan618 - Good to see you. I am glad that you made it to work. What a busy morning you had at your DD school. I am glad that you went to help and i know how fatigue that can make you. I help out at my kids school and i am worn out when i get home after helping but i love to be with the kids.

I hope your sleep study went well. I hope your thanksgiving went well. (((((HUGS))))

nana-anne - I am glad that you are staying. It can be a long road to getting answers. Just know that we are here every step of the way with you.

Lots of (((((hugs))))))


I am sorry that it has taken me a long time to get back. With company over the week and my little one comeing down with the flu it has been busy.

Now everyone is it back at school and the company has went home. I am ready for some sun and my hammock. I hope everyone is haveing a good week.

I will start a new thread in the morning. Lots of (((((hugs))))) everyone.

[jumpinjiminy]

Hi all. Checking back in to limbo island. MVM, my son was off school all week last week too. I love having him home, but was relieved when he went back to school this week. There's something about everyone being home that keeps me from getting things done. Distractions maybe?

I ran into my GP by chance and during our chat I mentioned the new clues of high TPO antibody titers. We have an appointment on Wed, but his response was that just tells us there's something autoimmune going on. It's a start at least. Prior to this discovery, they were still looking at everything as a possibility. I think it narrowed things down some.

Saturday, a new flare up of neuro symptoms started. It's been a long time - over a month I think - since anything has made a comeback. Everything was going away nicely until I ran a fever for two weeks solid.

I think his next move will be to refer me to an endocrinologist. And then what? I don't know. I'm still hoping for a script of steroids to see if this thing will calm down and heal up.

For anyone who hasn't seen my other post and was wondering about the antibodies, if this is what's causing the problems, it's called Hashimoto's encephalopathy.

[mariefnp0620]

Hi, I'm new here too - no dx - I won't get into my long story of having seen 2 other neuro's in the past 5 years both of whom said no MS, but now this PCP is thinking it's possible === so here we go again for round three...aggh, tired of it all.

Symptoms now are tremendous bilateral leg weakness, esp after taking a shower - hand tremors , fine motor skill problems with fingers - like picking things up, dropping them. weight loss of 20 lb unintentionally (but that may be side effect of meds for my fibro). Had my MRI last week and seeing new neuro tomorrow who specializes in MS...so we'll see what he says.

Besides all this I have RA too, taking weekly injections for that, and the fibro....just never ends.!!!

Nice to meet you all