Calling all limbo-landers limbo check in 10/18/2011

[derrie]

Oy, they wouldn't tell you over the phone, Mare?

My LP results are supposed to be in today or tomorrow, and the neurologist said they'd call. I'm anxious to hear, mainly so I can just get on with it all. If the LP is clear, I'm done with diagnostics unless or until new symptoms arise or my current ones (mainly paresthesia, moderate to occasionally intense pain, and a few mild spasms here and there) become unbearable. If the LP shows something, well, we'll take it from there.

I have a gut feeling and a certain optimism that my LP is going to be within normal limits, so I just need them to call me and tell me, so I can get on with my life, albeit with a tingly, twitchy body!

As if staring at the phone will make it ring... But I keep staring...

[Mama_Darwin]

No More Limbo?

i received today, folded neatly inside a very innocent-looking white envelope, the results of my recent EEG and MRI. The EEG looked normal. The MRI, however, not so much.

Apparently, i am not crazy (or not a hypochondriac anyhow). i have, between the C1 and C2 vertabrae, a "syrinx" in my spinal cord. i had to look up what the heck that was. As i have since learned, a syrinx is (this from Wikipedia) "is a rare, fluid-filled neuroglial cavity within the spinal cord (syringomyelia), in the brain stem (syringobulbia), or in the nerves of the elbow, usually in a young age."

i know exactly the spot to which the radiologist refers in his conclusion. It was actually one of the things on my CD that i was going to ask the new neuro about. It's a long oval (just 2mm x 10mm, according to the report) running lengthwise in the very center of my spinal cord.

Anyhow, i'll let y'all know more after Thursday's appointment, but apparently, this explains my symptoms to a tee. It is reasonable, i think, to assume that i do not have MS.

[derrie]

Mama-D-- Of course you're not crazy (though I seriously, seriously know the feeling). I am glad that it's shaping up that your symptoms' cause is being identified so you can get appropriate treatment. Don't feel like you have to leave, either, OK? If you need support during whatever they do to deal with this problem, the ladies of limbo (we're mostly ladies around here right now, I think) are here for you!

* * *

I heard back on some of my LP results. Normal cell count, glucose, protein, culture, gram stain, and cryptococcus (whatever that is, I don't have it). So that rules out meningitis and other bacterial and fungal infections. Though, with the chronic nature of my symptoms, no one ever really thought that is what it would be.

The rest of my stuff got sent to Mayo in Rochester. I asked the nurse what else he had ordered, and oh my. The list is too long to remember, but included tests that can indicate neurosarcoidosis, Lyme disease, West Nile Virus, neurosyphilis, paraneoplastic syndrome, MS, and some other stuff I don't remember. I looked up these tests on Mayo Labs' website, and we're looking at at least $2000. That sort of shocked me.

That said, that laundry list of tests has confirmed my decision that if all of this is normal, I'm done! Done, done, done. I can live with the symptoms I have, and if they don't get worse and new ones don't pop up, I'm calling it good. Seeking an answer to a neurological mystery is time consuming, expensive, and emotionally exhausting. I'm rather glad I had this LP-- it's going to help me get closure on this whole spell and move on with my life. Yay!

[Shallwearpurple]

deciding to leave the island

My symptoms continue to improve. Most are gone or almost gone at the moment. It appears that a lot of my problems were B12 and I have nothing to worry about. I'll know more in December when I see the MS specialist to follow up on the B12 testing. I've decided to consider it a done deal and leave the island hoping to never return.

For those who are new here, they thought I might have MS because of my symptoms. I was stumbling, falling, dropping things, fumbling, having memory issues, speach problems, hearing problems, nystagmus, all sorts of pains: electrical stabbing/raw skin pain when the skin looked normal/ wide spread flu-like pain/joint pain/stabbing pain/headaches/stabbing/bug bite type feelings. I also had numbness, twitching, fatigue, and MS hug.

The MRI's, VEP and BAER were all normal for MS. An MS specialist is fairly certain that it was all caused by B12 deficiency. It looks like it started in my last pregnancy and was missed by a number of doctors all these years while it was getting worse all the time. Isn't that ridiculous?!?!

I'm still on shots and will be for a while yet.

They found thyroid nodules in the MRI. I've had an ultrasound that agreed witht he MRI...lead to a biopsy which was inconclusive and a ton of blood tests that were all normal. They say the biopsy needs to be repeated. We'll see.

I've learned quite a lot through all of this. I'll be praying for all of you. Blessings.

[minivanmama]

Hi everyone

Boy the island has been busy this week. I am sorry that i have not posted back this week. I have been reading and seeing how you are doing.

I am starting the week island thread now so i hope to see everyone on the island. See you there.

I am going to ask the moderator who reads this to lock/close this thread now so people will post on the new thread. Thank you for your help.