Newbies Lounge Check-in, May Days 2014

[anoama1]

Help me help myself!

Hello,

Thanks In advance for any help. I have not been diagnosed with Ms yet. This was my first time going to the hospital to find out. I have a numb/tingling shin for 3 weeks now, exhausted though muscles like I ran a marathon, My face is also burning like a really bad sunburn but there's no sunburn. I find it hard to walk down stairs because I think my legs are going to go out from under me. I am always fatigued and take a lot of naps. I went to the ER Because the burning on face was SO bad. The ER dr basically told me to see a psychiatrist for anxiety meds. He told me my Mind is making it up, he called it somatic pain.

How do I combat getting laughed at and being told it's anxiety? He didn't even know a burning face is pretty common with MS. What do I do now? He ran no tested at all. I'm almost 100% sure that this is MS.

PLEASE Someone help me!

[SNOOPY]

Hello anoama1 and welcome to MSWorld.

He didn't even know a burning face is pretty common with MS.

Not necessarily. Abnormal sensations can be caused by many medical and mental health conditions.

An Emergency Room is not the best place to try and receive a diagnosis.

He ran no tested at all.

I would suggest seeing your Primary Care Physician and discussing your symptoms with him/her. Your PCP can do some testing to rule in/out some of the other causes for your symptoms.

Best wishes in your diagnostic journey.

[gomer]

anoama1... I have to agree with Snoopy.

First you NEED a good family doc you can communicate with. Usually that will be your ticket to get into specialist that can run tests and get to the of the problems.

I went thru decades knowing something was wrong with NO answers. Yes even sent to the shrinks decades ago who agreed I was not nuts or imagining, just "adamant" something else was wrong. It was only by chance I had gone to a specialist about a MS sx who opened up the MS can of worms, told I needed to be seeing a neurologist.

Gomer Sir Falls-a-lot

[DonnaG]

June 25 2014 is THE day!!

After a year and a half of exhaustive testing, 5 MRI's, and 2 wonderful (sets of) doses of prednisone IV's, today is the day. The Neuro called me today just after lunch and gave me the news that there are now 2 spots in my brain, as well as the one in my c-spine, so it's official, MS!

I'm shockingly relieved, but I also have the urge to throw up. I meet with him next week to discuss "treatments" and as much as I've learned, I have no idea where to start with medications (aside from the fact that I really don't want steroids on a regular basis).

Gomer, thank you for that post! It made me feel better (and truthfully, made me cry, again). As badly as I wanted answers, ANY answer, I've changed my mind (typical woman ) and have decided I kind of don't want THIS answer.

[Tellyanna]

Been in limbo, and full of denial

I had my first flair up in September 2012 it was two days after my birthday my eye went really funny and I had no depth perception I was very scared!

It got worse over the course of the week I finally made a dr appointment with my family dr. He called my optometrist and within the hour I was in his office had test run. My optometrist wanted an MRI. So I was scheduled in a month.

My first MRI results had me confused I got a phone call that it was clear then I got a 2nd one that I needed to come in to my dr to discuss the findings. I was told I had 3 MS like lesions.

On to the neurologist which took 6 months to finally see at this point I was going crazy with worry fear and the unknown. He asked me questions and sent me for more tests and I seen him one month later where I was told I needed to pick my DMD. I have not had an "official" diagnosis.

I chose rebif as my treatment and thought to myself there is no way I can do this I have a very huge fear of needles. The nurse came she talked me into my first shot and I have been treating myself since. Not that it's easy I still talk myself into every needle but I know I'm doing this for a reason.

For 9 months I have had fear depression fatigue bladder issues and migraines I have had no new lesions and my test all look good my nero has renewed my rebif prescription for the next 2 years and I'm ok with that. I have finally accepted this is my life and i am finally awake to the fact there are people out here I can ask questions and receive answers.

I'm sorry I did not look earlier I was very angry I really did not like the truth of what was actually happening to me. I even asked my Nero if this could be wrong and unfortunately he told me that it is most likely the right diagnosis so here is to fighting one day at a time against an invisible army in me!

[tspaulding]

I chose copaxone for my first med b/c it had the least side effects. This med can now be taken everyday or 3x/wk, I would speak to neuro about this.

I did not take the interferons, rebif, avonex, betaseron b/c they have flu like symptoms that hopefully go away over time.

I would speak to your neuro about the side effects and decide what you think is best for you.

Take care