I am new and very Scared!

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New Member

Date Joined Feb 2008
Total Posts : 2
   Posted 2/5/2008 3:00 AM (GMT -6)   
 Hello my name is Sheyna.  I have completed all my blood work.  I went for my MRI of my spine this evening.  On Friday I go for an MRI of my head at 6:45AM (No Mercy!).  The doctors have not said much however three of four have been baffled that I was not tested for lupus one mentioned MS .  I also have one of two neurologist making sure I do not have MS.  Please ignore the mistakes my hands are in pain tonight.  Can everyone please respond with their first initial syptoms that got them to see the doctor and what the test were that they went through and what was the test that was the decider.  I was told MS and Lupus are comparable, is it? I am totally lost I look forward to any advise......and thanks ahead. tongue

Regular Member

Date Joined Apr 2006
Total Posts : 299
   Posted 2/5/2008 5:33 AM (GMT -6)   

Hi Sheyna,

I'm sorry to hear you are having to go through this.  This is a wonderful forum full of very supportive people so you have come to the right place to ask your questions...

My first symptom was fatigue, but the first thing that got me to the doctor was my leg going numb.  My diagnosis was very straightforward (although for many it is not, and can be a very lengthy process).  My family history of MS, my symptoms and MRI were enough for my diagnosis as I had many lesions on my brain and spine in the typical places for MS.  They usually will also do a spinal tap to help with a diagnosis.

Can I ask what your symptoms are?  I really don't know much about Lupus and how it compares with MS... others here may though.

Take Care,



Diagnosed with MS April 2006
Started Tysabri Nov. 2007

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 2/5/2008 9:25 AM (GMT -6)   

Hey Sheyna,

I am so sorry you are going through all this.  It can be a very scary process.  My first symptom was vertigo that over a span of about 3 weeks became severe enough to require hospitalization.  I could only walk if I held onto walls.  I, like Shar, was blessed to be diagnosed quickly.  I had white matter lesions of the brain, oligoclonal bands in my cerebral spinal fluid and failed evoked potentials test (abnormal vision, normal hearing, abnormal somatosensory).  I had nothing else show up in blood or spinal fluid that could account for the symtoms. 

For some it is a quick diagnosis and for others it takes a long time.  It depends on what doctors can rule in and rule out.  Many end up in "limbo" when the doctors can't see definitive results in testing.  Then it becomes a watch and wait situation. 

Hang in there.  This is a wonderful place of support and information.  Good luck.

Love and prayers,

Gretchen       co-moderator MS board       diagnosed with MS July 2006

Post Edited (Gretchen1) : 2/5/2008 7:28:22 AM (GMT-7)

New Member

Date Joined Feb 2008
Total Posts : 4
   Posted 2/5/2008 9:38 AM (GMT -6)   
My first symptom was numbness and then a few days later I was wobbly, had double vision, fatigue.  I was send for an MRI and diagnosed within about 3 weeks from my first symptom.

(Mod. Note: Please note Forum Rules no. 4 as sited in a previous post. Please remove the link in u'r signature line.)

Post Edited By Moderator (rhondab) : 2/5/2008 9:14:11 AM (GMT-7)

Regular Member

Date Joined Aug 2007
Total Posts : 144
   Posted 2/5/2008 11:13 AM (GMT -6)   
Like Gretechen I started out with vertigo wound up in the hospital too.I was tested first for epelpsey an diabetis. I had c-t scans evoked potential tests took me 6 years to get an answer.....BUT that was before MRI.I had been poked probed and tested once I had the MRI ihad conflicting opinions as I was still symptomatic the 2nd neuro thought thats what is was so Ihad an offical DX.Which in a way was a relief.Good Luck to you.I also was checked for lyme disease too.Really hope all goes well for you and hope to see you posting here and on chat.....pokey 79
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 2/5/2008 7:26 PM (GMT -6)   
My initial symptoms were numbness and tingling in my legs, weakness in my legs (my legs would collapse under me), and sometimes overwhelming fatigue.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

mystery reader
Regular Member

Date Joined Jun 2007
Total Posts : 257
   Posted 2/5/2008 7:36 PM (GMT -6)   
My initial symptoms were numbness and stiffness in rib cage and left leg. I was diagnosed within 4 weeks through 2 MRI's and spinal tap. Hang in there.
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007

Regular Member

Date Joined Mar 2007
Total Posts : 260
   Posted 2/5/2008 9:17 PM (GMT -6)   
Hi Shayna,
I am sorry you are going thru all this. Welcome to the board. My symptoms that made me seek medical attention were left leg pain, numbness, squeezing feeling in my feet, and back pain. I could not stand for more that 5 minutes. It was terrible. Since diagnoses, the more i read, the more i believe that i have had it for many many years (as does my neurologist). 7 years ago, my eyes went crazy. Had double vision really bad. As i think back, i had symptoms in my early 20's. Sporadic numbness throughout my lowerbody that i was totally convinced was a piched nerve. I was afraid to go to the doctor, so i just let it go. Now in my early 40's, i have some residual disabilities, but nothing i can't handle. You'll be fine. It's better to find out is my point so you can start to feel better. I know its scarey, but honestly, it's a relief to just know and get on with treating whatever is goin on. As far as the deciding test, after what seemed like i had everyone, it was the MRI of the brain and the spinal tap. i hope this helps.
Take care,
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta

Lil Kimmie
New Member

Date Joined Feb 2008
Total Posts : 5
   Posted 2/5/2008 10:26 PM (GMT -6)   
My symptoms started 8 years ago. My MS symptoms started in my eye. I felt like someone flashed a camera in my eye, or like I had sleep in my eye. After 3 eye doctors and and MRI they said they could not find anything wrong. My regular doctor asked if I had ever been tested for MS. MS do not run in my family and I thought she was crazy. After about a year those symptoms cleared up. A few years later, the symptoms came back as "rocks" in my socks and numb lower legs. Once again my regular doctor suggested I get another MRI to check for MS. By the way the first one came back ok. This one also came back fine. After the 3rd symptom showed, I was referred to a neurologist for further testing. She sent me in for yet another MRI. When that came back with "spots", she pushed for the "icing on the cake", a spinal tap. I went in for that and the fluid was clear. Hum, interesting since MS would show cloudy fluid. I was told it may be too early on for it to show. Once again the symptoms cleared up. As I progressed, I would have flare-ups. I finally started to have tonic spasms (seizures). I thought they were dizzy spells. After a 4 day stay in the hospital and a new neurologist going back and forth with it being MS,  I decided to head into the city. I was blessed with an awesome doctor at the University of Chicago. Within 1 hour, this doctor told me I had MS. I was so happy I wanted to hug him. After 7 years of "yes you have MS, no you don't" I just wanted to know!!! I decided to go on Betaseron. The only problem I have had is I need to gain weight so the shots don't hurt. I have to say having the right doctor makes all the difference. Try to eat healthy also. This has really helped me a ton.
Stay positive and determined. You will have good days and bad days. I put my trust in God that everything will work out.
Good luck to you!

Regular Member

Date Joined Aug 2006
Total Posts : 68
   Posted 2/6/2008 2:50 PM (GMT -6)   
I am sorry that you have to go through this will so many unanswered questions. It can be scary we all know that and understand.

My symptoms that lead me to see a doc. was Optic Neuritis (ON)
They did eye exams and then sent me to get an MRI, blood work, and a spinal tap (it's really not as bad as it would seem)
Spinal tap came back neg. because the MS was "new" and not in the CSF yet.
MRI came back pos. and from that and the symptoms I was diagnosed June of 05.
I'm on Tysabri.

hope all goes well.

New Member

Date Joined Dec 2007
Total Posts : 2
   Posted 2/7/2008 4:10 PM (GMT -6)   
I really think fatigue was my first symptom.  But it took an episode of optic neuritis in my left eye to lead them down the path to dx my MS.  MRI showed the lesions.  Then a spinal tap which came back showing I had 3 oligochlonal bands and that meant MS with a positive MRI and positive spinal fluid. 
Keep us posted.
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