I'm a newbie

[luvnGod]

Hi Everyone,

I'm a newbie and searching for answers.  I honestly don't know where to start and I'm quite exhausted at the moment, so I will keep it brief.  I have been having many many symptoms that have been pointing to MS for quite sometime now.  I've been to numerous doctors only to be pushed to the side with no answers or the ever popular, "It's in your head" or "Just try not to think about it."

I saw a neurologist yesterday and he has scheduled VEP? and EKG for next Tuesday and an MRI for Wednesday.  I've had several attacks in the last couple of months and really scary ones in the last couple of weeks.  I had an MRI 3 years ago that was normal.  

The symptoms just seem to keep coming, old ones that seem to just get worse and new ones that really scare me.
Vertigo, dizziness, numbness, tingling, loss of concerntration, memory loss, lack of coordination and balance, face pain, headaches, spasms, cramps, cold spots, stiff legs, muscle weakness, limping, staring off in space, pressure in ears, vision blurry, seeing spots and I know there is more.  Sometimes I really feel crazy, but know my body and know this isn't normal.

I am in limbo about how I feel right now.  Dreading a diagnosis like this, but strangely looking forward to answers.  I read some of the threads and I felt so relieved that I seem to fit in somewhere.  I pray God's blessings on you all and I thank you for taking the time to be a voice and a shoulder for others!!

Love and Prayers!

[Sidesteps]

I am exactly where you are now... waiting...your symptoms match mine almost to a T! It's so frustrating!

It all seemed to start with muscle twitches that seemed to progress to an anoying level then I started to get jerks (a form of tremor) and they went to doing this periodically at night. At one point, I had a weird "energy" or "vibration" that I felt throughout my arms and legs. That went away and then I had swallowing problems which prompted my push to see a Neurologist.

I have had bladder issues for some time. Muscle fatigue. I also have optic neuritis though I'm not blind my right eye just feels "off", blurry and hurts some but my actual vision is fine.  At my worst, I had stabbing pains throughout my body, vision issues (where I could feel my eye jerking with movement) and generally felt sick with vertigo. It seems that my symptoms show up then fade away.

I've had an EEG, VNG, a CT scan (which showed several areas of decreased density in white matter),  a cervical MRI (that was clean, that is good news!)  and an EMG.  I have a followup appt. with my Neurologist on Tuesday to get my EMG results. The cervical MRI doesn't show lesions but I do have a C5-C7 bulging disc and an annular tear. I'm pretty sure that doesn't have anything to do with my issues other than the pain in my neck I've had off and on for 5 years. These neuro symptoms are new and progressive. I did specifically ask about MS and he said it was not off the table due to all my clinicals but I'm going to request a brain MRI. I think he screwed up and should have ordered a brain MRI in the beginning.

I have also scheduled an appt. for a second opinion with the Director of our local MS Research facility for a second opinion or if I do happen to get a DX then he can take over treatment. I'm not super happy with my Neurologists plan of action since I think he overlooked MS initially until I brought it up. Sigh.

P.S. Right now, I'm trying to figure out if I should make an eye appt. with an Opthmalogist and get the eye issue check out independently. I'm still not sure I trust my Neurologist.

[luvnGod]

Thank you both so very much for your kind words and insight.  I can tell this is very much a family and I look forward to getting to know you all and sensing a bit of comfort.  

You are right, the "not knowing" part has been the hardest on me personally and others around me.  My husband is having a real hard time dealing with my fatigue, clumsiness, forgetfulness, and the whole situation.  My 2 boys simply say, "Mommy doesn't feel good again."  It breaks my heart.

I direct and teach Preschool in our church and the children are really picking up on what's going on as well.  The parents have asked questions and my Assistant Teacher/great friend has been very concerned.  One step at a time right?

Oh and Bob, I meant to say EEG....hee hee

Thank you both again and many blessings!
Hope you are well

Stacie

[COBOB]

Welcome to the forum.  I;m not sure you will dread the diagnosis.  I dreaded the not knowing.  Limbo Land isn't much fun, and getting to a diagnosis can be quite taxing.  Sounds like something nuerologic, but it may not be MS.  Keep in mind that MS is a diagnosis of exclusion.  They have to test and rule out a bunch of other stuff first.

The VEP is a non-invasive test of the Optic Nerves and Tracts.  You sure it is an EKG (electrocardiograph?)  More likely it is an EMG or EEG if the Neurologist ordered it.  The EMG tests the peripheral and root nerves.  

Hang in there and ask your questions.  Many of us have been through different parts of the trip, but together we can help you find some answers.

Bob

[figuerpa]

Hi and welcome to the forum. This is a great place to find support you need and want. I have been blessed to find the people here and they have become like family to me even though I have never really met in person.

Being in limbo is a hard place to be and many of us have been there for many years while some of us get a diagnosis rather quickly. If it is MS that they are looking for just remember that they will have to rule out every other mimick out there before they can dx (diagnose) MS.

It is a long and hard battle and we have all had those doctors who say it is in our head or tell us to try not to think about it. Well they aren't the ones going through what we are so it is easy for them to say that.

Sounds to me like the neuro you just saw is taking all the right steps, hopefully the tests will bring some answers. Remember you are not alone in this we are all here for you and we have all been there done that or are still there.

Take Care,
Paula