Still Trying to Figure this Thing Out

[ruthie_rosebud]

Hi there. Here I am playing detective again. That is a good way to characterize my experience with MS from the beginning: me, on the Internet, doing searches and trying to figure out, "WHY DID THIS HAPPEN?" On a good day, I don't even think about getting on the Net and researching. I play with my two kids (I've been a stay-at-home mom since 2006), go outside and garden (when it's not too hot), read a book, or call a friend. But when the numbness gets bad or when I can't sleep (like now) or when I am feeling down, here I go again, trying to figure it out.

I've been diagnosed with MS since Nov. 2011, and have been injecting Copaxone. I've accepted my diagnosis (mostly). But there are pieces of the puzzle that still don't fit. I have numbness in my face ALL THE TIME and really, no where else. The numbness migrates all over my face. I am twitchy ALL THE TIME, little tiny twitches. When I talked to my dr. (and a dr. at Mayo I was seeking for a third opinion ), he said that the migrating numbness in my head and the tiny muscle spasms were not classic MS signs. They tested me for fibromyalgia and other stuff and came up dry.The thing is, these are my only supposed MS signs and the symptoms that drive me crazy every day.

Should I look for another diagnosis on top of my current MS diagnosis? I have...I have been to an LLMD (lyme literate dr.), even though my Lyme tests showed there was little evidence to back up a Lyme diagnosis. The LLMD still concluded I had "Master's Disease" which is a Midwest tick-borne disease somewhat like Lyme. I took antibiotics which initially helped with the numbness and then abruptly did not help. I think I was desperate to go to the LLMD and part of me thinks I should go back and do the full round of months and months of antibiotics just to see if it would help.

There is an alternative medicine dr. my husband's boss recommended who would test me for different kinds of toxicity through hair analysis and make me eat liver (her words) I think I am ready to try this.

However, in my heart of hearts, I think I need to cool it with all the "WHY?" questions and just accept the hand I've been dealt. I am on a boatload of Gabapentin and Cymbalta to mask the numbness and tingling, and most days, it works pretty well.

Maybe progress for me is to quit digging on the Internet and tune into other people as much as I can.

Thanks for listening to me vent. I'm new here, but I've heard this is THE place to be if you have MS and need to talk.

[22cyclist]

ruthie: Welcome to MS World! I am sorry you are having such a hard time with your diagnosis. Since you have had 3 different opinions about your MS, and they all say you have it, you might just have it. I sometimes have traveling numbness in my face, but I have bilateral trigeminal neuralgia. They are controlling yours like you do.

It probably is a good idea to stay away from Dr. Google for a while. If you tested negative for Lyme, and tried the Abx and they only worked for the first month (coincidental) then you probably don't have Lyme.

Not all people have the same symptoms with MS. Everyone is different. Obviously your MRI looks like MS or you wouldn't have been rediagnosed 2 more times.

This is just how your MS presents, they have ruled out the mimics. It is OK to be different even though you might not want MS, it seems you have it just like us.

I hope you feel better about things soon. Come on here and vent anytime!

Lisa
Moderation Team

[stress]

Hi Ruthie, this is my first time writeing a thread and 1st here.I am diagnosed in 2009 finally but I really wanted to let you know I also have what I call roaming numbness and bugs crawling on me,biting which makes me touch myself all the time' the gabapentin helps it is my 'MS symptom.and drives me crazy everyday

[ruthie_rosebud]

Thanks, guys. The more I talk about this, the better I feel and then the less I need to talk about it for a while. Dr. Google is not my friend, though, I agree .