Help, aliens have hijacked my body!

[beachcomber13]

I originally posted this in the general neurology forum, and someone suggested posting it in the MS forum...

About two months ago, I got sick. Here are my symptoms:

Fatigue--I can't make it through a full day of work anymore
Shaky feeling
Blurry vision when tired
Need a lot of sleep, at least 8-9 hours
Difficulty sleeping sometimes (not every day)
Sore muscles, feels like skied all day
"Haywire nerves" tingles--all nerves "alive," skin crawling
Forgetful
Weak muscles, poor stamina
Pins and needles tingles in legs (esp. right ankle/foot) and lips
Tight muscles
Poor balance, clumsy
Walking weird sometimes--heels don't quite touch the ground, esp. right heel
Limbs feel heavy sometimes

I am a 33-year-old woman with the following medical history:
-Spina Bifida Occulta dx 1990 (age 12)
-Gallbladder out 12/2009
-Hiatal hernia dx 12/2009
-GERD dx 12/2009
-Kidney stone 3/2011

I have been a healthy person until the last three years... and definitely way downhill in the last two months.

I have noticed that heat and being tired makes my symptoms worse, especially the crawly feeling, shakiness, fatigue, weakness, and forgetfulness.

The tight muscles and cramps are usually worse in the morning.

For the medical types out there, I am taking the following medications:
-Pantoprazole 40 mg 1 x day
-Vitamin D 50,000 IU 1 x week
-Iron 65 mg 1 x day
-Gabapentin 600 mg 1 x day

Gabapentin helps with the skin crawling feeling and the muscle cramps. I've been on it for three weeks.

I saw a neurologist three weeks ago, and he was thinking MS or possibly seizures. My EEG was clean. My brain MRI showed "white spots" that did not take up the contrast. He said the MRI indicates I do not have MS. He said it looks like someone my age who suffers from migraines. I told him that I have never had a migraine; he was unfazed.

He is keeping me on the gabapentin since it's helping. He said to have a nice summer and he'll see me back in two months. He'll do another brain MRI, which he expects to be normal.

So... I'm still sick! Any thoughts would be greatly appreciated.

[tammy197238]

It wasn't too long ago that I was also in the place your in.  I was diagnosed in May this year.  The Denial is normal at least thats what my friend Lu Lu says to me very kindly all the time :)
My husband on the other hand gets majorly irritated and says  "Do you really believe that your doctor is wrong after all your test came back abnormal?  
You will definitely go through stages...I got angry, extremely sad, denial all the way.  Lu Lu also stated it can take up to a year to fully come to terms with the diagnosis.
So hang in there and allow yourself to feel however you want.  Just remember your story might end up different that the stories you read on the computer.  Alot of stories I read are worse case scenarious and yes they are scary. Please come here and vent, cry, complain...therre are alot of nice caring people here to listen and help.  You will be ok!

tammy

[Lulu54]

One of the first requirements to being kind to yourself around here is to indulge in ice cream, and lots of it!  

Then  surround yourself with caring family and friends who will help you when necessary and get out of your way when you can do it on your own or just need to be left alone.

Take small bites of the information on MS - don't overwhelm yourself with all the words about MS.  This is a very confusing disease and it takes time to acquire a level of competence with the information.

Build yourself a medical team who you like and who respects you and take charge of your own care.  Don't be frustrated that you won't see your neurologist often - many people only see them once a year unless they are having a problem.  Remember these doctors are going to be with you a long time, so you want doctors who will put you at the center of your team.  

Just when you think you have come to grips with this idea of having MS. something will sneak up on you and send you into denial or despair or any of the numerous other states.  Don't worry when it happens, just roll with it.  If you find yourself depressed, be sure to talk to your doctors about treatment.  I think I remember 85% of all people with MS have depression - some of it is situational and some of it can be organic and part of the disease.

Throw yourself a big pity party - it's  best if you do it alone! - and then get on with living your life.

hugs,
L

PS - don't forget the ice cream

[beachcomber13]

That was exactly what I thought--if I'm in a wheelchair, how will I chase after my preschool students??

I looked up some info on msfocus a couple of weeks ago, and I cried a lot. Sometimes I want to know more, but somehow I hate reading other people's experiences. It's scary.

I just typed an introductory post, so more info there, but I had the diagnosis and then it was taken away... then given back. I'm definitely still processing.

A year! Wow. I felt like I was moving through the grief stages until a few days ago the doctor said that maybe it's not MS (she took it back today). After that I moved very swiftly back into denial. Now I feel like I'm starting over.

How do I be kind to myself?

[Lulu54]

Welcome back beachcomber.  We are always curious to hear the outcome, but I would have liked to hear something different than the aliens won this battle.  So now you get the time to figure out what this means.

I can tell you that it doesn't mean the end of life as you know it.  It just means making some additional drug options to choose from in the hope that they will slow the disease progression.  Everyone looks at the dx of MS and immediately thinks of being in a wheelchair pretty quick.  It usually doesn't happen that way.

Please give yourself some time to absorb this news and then jump in and learn all you can about this MySterious disease.  It is different for everyone, but there are a lot of commonalities. There really is a lot of power in gaining knowledge.

Expect to have ups and downs with your emotions as you try to wrap your brain around this idea - we see it seems to take about a year.  So while you work it out, most importantly remember to be kind to yourself.

Think of this forum as the Mother Ship - come back whenever you are feeling a need and we'll be here for you.

hugs,
lulu

[Sidesteps]

Ack!

What happened? The recent MRI showed new lesions?

I am sorry for the dx but hoping you are getting treatment. I had my melt down last Fall and am still waiting for a clear indication of what this is. I had a spinal tap last week.

How are you feeling now? Over your relapse?

[beachcomber13]

Got an MS diagnosis. :(

[Lulu54]

I was trying to get into the shower and ready to start my day's errands but your alien abduction caught my attention.  Most of us here feel that at som,e time or another our body has been snatched and probed and returned in a foreign form.

It is not unusual for the dx of MS to take a very long time with lots of appts. and tests thrown in.  It is a diagnosis of exclusion - the doctors have to rule out the other possibilities.  What concerns me is this doctor doesn't appear to have done other tests.  

Have you had blood work done?

Migraines are not always the classic pain i nthe head, got to lay down in the dark quiet space symptoms we expect.  They are very confusing and he may well be right.  But there is also the possibility he may be wreong.

It worries me that he already expects your next MRI to be normal - If he is thinking this way he is not open to other possibilities.  

Is it possible to switch to a new neurologist, prefereably one who specializes in MS to take a better look at you?   You don't mention - did this one do a complete neurological exam,?  Not just a few taps on your reflexes but a thorough exam?

Sorry for all the question -

from the mother ship,
Lulu