Undiagnosed and scared

[emmas1]

I'm in a dark place...I've had ongoing parasthesias for the past 4 months and a normal mri (closed, 1.5T) of brain, c-spine, tspine, and lumbar spine. I have a lumbar puncture scheduled for this Friday. I have been getting numbness that comes and goes all the time on the left side of my face for the past week and more trouble w/ balance. This morning I woke up and had trouble walking straight...just felt very off balance. I went back to bed and I've felt much better since.

I'm so scared about these ongoing symptoms w/ no diagnosis. I feel I'm all alone w/ these scary symptoms and no answers. I've got 3 children under 4 years old to care for and I'm terrified of not being able to care for them.

I feel depressed, scared, alone, and am really having trouble coping with the what if's.

Please help w/ any advice...it's so hard to look "normal" and feel like your world is slowly falling apart and nobody can help.

[AmishErin]

Welcome to the forum lots of cool people and more information than you will every think you need.

When I was diagnosed the doctor told me how lucky I was to get a diagnosis so quickly.  I didn't feel lucky then, but I do now.

In the first year or so that I was diagnosed I lost the eye sight in my left eye.  Lost the ability to walk or write or feed myself.

One thing that I wish someone had told me was that it would all get better.  I got most of my eye sight back and now walk unaided.  Oh I still have a wheelchair, a walker and half a dozen canes... but I keep them in the basement.

My grandmother used to say "This too shall pass"

It will

Hugs and welcome

[HVAC]

Alone you are not! There are many here diagnosed and undiagnosed who feel for you.

I felt that way for two years while I was waiting for a diagnosis.

The fear was terrible. I felt isolated and depressed. I felt like I was on a roller coaster.

Reaching out to the forum helped a lot.

Alex

[uk2]

I dont have any answers for you but to carry on expressing your fears amoung people who understand if you have faith turn to that and ask your friends for support.

I am a singal mum of 3 young girls and no extenened family to help and have been through so many tests all negative but i know there is something wrong so i kept fighting and thats all you can do you know your body and dont let anyone else tell you any different.

sam

[ginak]

I have been without answers for a year. I know exactly how you feel. My life is full of doctor appts and no answers. The depression seems to be getting the best of me lately as well. The people on this forum are very nice and will usually respond very quickly. My life was normal up until July 5, 2008. I feel very alone and uncertain, especially without having any answers. I am supposed to have more mris in September, so I will have to just go from there. Hang in there and know that you are not alone! I could have written your entire post because your situation sounds a lot like mine!

[samandsprout]

You've come to the right place.  I have learned so much here, and it really helps to go into my nuero appointments feeling well educated because of what I've learned here.  And the support is really wonderful.

I am in a similar situation, however, by God's grace, my symptoms have been relatively mild.  My MRI, however, is abnormal.  And it is so scary knowing there is something going on in the brain that I can't help slow down with meds until something big enough happens to get to a diagnosis.  I had my first MRI in 2003, so it's a long journey for me.

I also have small children to care for, and that, indeed, makes it all the more scary...worrying about whether or not I'll be able to keep it up, worrying about how my health will impact them.  My mom has MS, so I know how it was to grow up with that.  I just take it day by day.

The folks here are always ready to answer questions or just be a shoulder to lean on.  So come here often.

Hugs,
Laurel

[CareBayer]

I know it's scarey too. I am also in the same catagory as many other posters here. Many symptoms, no answers.

It's a dark place because we dont know what's going on. A lot of other people cant see whats going on in the inside of our bodies so they have a lack of understanding.

What LuLu and Heather stated in there previous post is so true. Learn as much as you can about MS and other neurological diseases. Staying proactive is the key. Never take no for a answer unless you are comfortable with it.

Bernyee

[wadeheather]

I have been in that dark hole for almost a year now, too.  It's a horrible place. It's hard to keep looking for the answer when you keep getting told nothing is wrong, it's anxiety, blahblahblah. The best help for me has been this forum. It helps me to know that even if I don't have MS at least there are people out there that have many of the same symptoms as I do.  It's wonderful, too, that there is always someone here and you almost always get a reply from someone. And the reply is always infomational and/or supportive.

Please stick around!
Heather

[Lulu54]

Hi Emmas,
You are in a very dark place right now - having symtoms with no answers as to why is very scarey.   The absollute best thing you can do for yourself is to educate yourself - learn everything you can about MS.  Knowledge really is very powerful.

We have excellent health pages here - yellow icon, upper right side of this page - that will help you to understand what is going on and especially what you face with a dx of MS.

Please remember the face of MS so many of us see in the news is NOT the true face of MS.  The majority of MS patients never need a wheelchair, continue to work, have no difficulties taking care of their families, and overall live a fairly ordinary life.  

There are drugs available to help control your symptoms along with the disease modifying drugs (DMD's) that are prescribed to keep the disease from flaring if possible.  

Being the holidays there may not be many folks around here - but be assured they will show up and lend you some support.

Come back with your questions and we will help you through this.

be well,
Lulu