Anybody Have A Clue?

Hello To All,

I've been reading y'alls posts for awhile now, and I think it's great that there's a place to go for support and information. I was wondering/hoping if anyone could give me a little insight into MS. The majority of websites are written in what I call 'medical jargon', and aren't much more informative than my multiple doctors have been.

A little history of me...

The first 'symptom' that presented itself was numbness. I retell this story often just because it bugs my best friend, Ilene. I was 17 years old and was standing in a store with Ilene. I felt this sudden 'sensation' in the middle-right side of my back. I reached behind me to scratch and found that my back (middle-right side) was completely numb. I told Ilene that my back was numb and that I couldn't feel anything, her response "Don't worry, it'll come back." That was 5 years ago. I went to my PCP who then referred me to a Neurologist (I'll come back to this in a minute).

The second 'symptom' was the headaches (Onset 17-18 years). Of course my PCP dx 'migraines', and yet NO migraine Rx worked. Next dx 'cluster headache' and again no medication would even minimally relieve the pain. Out of other options he began prescribing me narcotics, low doses at first, but they never completely eliminated the headaches. In the past five years I have been Rx'd more narcotics than ANYONE I know, and to know avail. Finally at 18 I had one hit me so bad that I went to the ER, I was given morphine, which actually worked. My PCP helpless to differently gave me a home Rx for morphine.

The third 'symptom' was numbness that began in my toes on my left foot and has progressed to encompass both feet and is moving to my calves (Onset 18).

The fourth and final 'symptom' was this....bare with me, it's hard to describe...electric shock sensation at the base of my skull (Onset 19). Nearly scared me to death the first time I felt it. After some exploration I discovered that while normally random, it is brought on directly by looking down (dropping my head).

The Neurologist(s) sent me for MRI's (17 to be exact) which revealed 'abnormal white matter' in my brain but ALL of the images of my back (T-Spine, C-Spine and L-Spine) were completely normal. Then came the series of LP's (Lumbar Puncture/Spinal Tap) and Optic Nerve Exams. Which revealed that in their opinion, it could likely be MS. However after 5 years, stress, pain, money and more symptoms, I still cannot get a concrete dx.

I am 22 years old, attending school (Pre-Med) and going through a divorce. I have a lot going on and would just like to know if anyone knows anything. I was just wondering if anyone out there with a MS dx, had similar symptoms at onset. And any advice, suggestions, etc would be GREATLY appreciated. I just want to know where I should go from here...

Sorry So Long...
Thank you in advance to all who respond,
EyesOfAnAngel

[sllowe]

Hi there,

Welcome! I'm glad you found us. Your migraines and headaches (in my opinion) could be part of the cause you've not been dx'd with MS. It could be a red flag for them to check elsewhere for the cause of the lesions.

Or, clinically, and historically you don't fit the bill. For example you may not have had any attacks or your MRIs have not changed over time. Trying to leave medical jargon out for you but to be specific, they call this 'dissemination in time and space" in relation to attacks.

Question for you...on repeat MRIs are they also checking c- and t-spine? If so, this could mean they are still looking or waiting for something else to show up in another location in your central nervous system to lean them toward MS.

The McDonald criteria is in our health pages which is located toward the top right hand corner of the site - I think you will enjoy reading it.

Did you explain the electric shock to the Dr? This could be L'hermittes, but it's best to describe to him or her for dx of that. It's mostly uncomfortable than it is painful right? I have that too - but I don't get the shock - I just get a buzzing in the middle of my keister. I was scared to tell the doc, but I did and he said oh yea, that's lhermittes. It was no biggie to him, but he felt I had a lesion in my c-spine and I did.

So, bottom line is, I'm sorry you are in limbo, but I'm glad you are here. It's going to be important for you to keep a running journal (if you don't already) on some things that pop up and stay for awhile and then leave, or minimize.

Hope to help provide a little insight on why this can take so long. The others will be along to say hello soon! Please feel comfortable to ask anything! Try to get through symptoms best you can and know we're here for your next steps!

-Shell