My spinal tap has come back normal, but I have four lesions on my brain and have had the VEP test which came back abnormal for my eyes, but normal for hands, and feet and hearing. I am having what my husband and I call "attacks" that worsen during stressful times. My doctor says that I am in the highly probable category, but how long do you stay in limbo for?
5/17/08 10:20pm
I can only say that I, too, have had normal spinal taps. My MS diagnosis was the result of a neurological exam (second opinion) and MRI. The diagnosis usually takes multiple tests and ruling out other possible conditions.
I always suggest a second opinion from a reputable neurologist. It is what finally resulted in my diagnosis. In the meantime, keep a medical journal of your symptoms and don't hesitate to call your doctor if you have continued or worsening symptoms.
Let us know how you are doing.
9/25/08 9:40am
Hi Kim,
That limboland is frustrating, isn't it? To receive a definite diagnosis of MS, several different criteria are necessary. Basically, there must be evidence of disease activity which is separated in time and location.
Sounds like you have established disease activity in one moment, and now are waiting for the other boot to drop, which may or may not ever happen. I recommend keeping track of your symptoms in a journal. Make note of patterns and especially new symptoms which occur. This might help you in receiving a definite diagnosis and be able to begin disease-modifying treatment (if that's what your neurologist recommends).
It was over five years between my first MS-related attack and the final official diagnosis. It's a long road sometimes but you're wise to educate yourself now.
11/ 6/08 2:18pm
Hey Kim
I know you wrote this question some months ago and was wondering what the outcome was. Did you end up getting a diagnosis of MS?
For myself...I didn't do the spinal tap. So they just relied on evoked potentials (I did fine) and the MRI and my symptoms. I did get my diagnosis when they did two MRI's and there was a change in my scan over time.
I hope you are doing well and do come back to let us know how things are going for you at this point.
9/20/09 12:56am
Hi im new here, so i hope someone trys to help me and i hope i know how to get back to this site to read the posts, im bookmarking it im not computer literate lol. ok my question is, i was told i had fibromyalgia 12 yrs ago. I have suffered with pain for so long. 2 yrs. ago my mom passed away and 4 months after she passed on i had some strange things happening with my right eye. Kind of like a partial vision loss but i could still see its just that words looked smeared on paper. then it went away in like 24 hrs. then i was left with spots before my eyes for weeks and then light sensitivity. This happened the vision thing one night when i was experiencing a burning kind of feeling in the back of my neck and a horrible headach( i get horrible headaches), i went to a eye doc. and he could not find anything wrong and said to get an mri cuz it could be coming from my brain. I went to my neuro, that i have been seeing for a few yrs now. he sent me for an mri on my brain, and said it was normal. I went back to him beginning of this yr 09, with pain in my back and my head headaches and well just chronic pain as usual, and to tell him my eye was not the same since that had happened i asked him if i had a stroke he said no. He sent me for another mri, and called me 5 days later and told me he was lookking at my mri scan and said i have some kind of brain disease. At first he said he thought it was lyme, then he said after seeing me 2 months ago that it could be ms. he said i dont quite fit the criteria for ms but i have alot of the symptoms. he sent me for a vep test and told me it came back negative. he told me i passed it. thats all he said about that test. now he wants to do a lumbar puncture. and im sccared to death. I have a bulging disc in my back i lve with chronic pain from that that for some reason gives me genital pain and bladder problems at times. i went for p/t all summer, it helped some. i cant have caffiene something i was told they give you to help avoid the headache after the lumbar puncture. I cant even eat a piece of chocolate without getting dizzy and shaking out of control. he knows i cant be given caffeine. i am very frightened to have this test. i do have a vit d level of 25 i found that out from an infectious disease doc. 4 yrs ago, he tried to treat me with some prescribed vit d but i had a very bad reaction to it and had to stop takin g it. im asking for help here . i have fatigue muscle pain bone pain, strange feelings like burning on my skin when i lie down my legs to my feet and sometimes from head to toe it feels like my blood is shaking under my skin, i dont know how else to explain that . sorry. i get bad headaches and neck ain can be severe. are there other tests that can be done to try and determin e if this is ms or something else? i just have too many problems that i can barely live with now to have a test like a lumbar puncture and possible have long term problems i have heard nightmares about this test from one person who was a nurse. im lost can anyonne suggest anything for me it would be greatly appreciated. thank you Lisa
4/10/12 1:40am
Hi, In 2009 I started with numbness in my right hand and tinglingling down my fingers. Always felt dizzy and I often walked like I just got off a ride or boat ...like someone was moving the floor on me...
2009 test started with MRI CAT SCANS XRAYS BLOOD WORK AND LOTS OF BILLS.
I WAS TOLD I HAD FIBROMYALGIA AND DEGENERATED ARTHRITUS IN MY NECK AND BACK I WAS TOLD I NEEDED NECK FUSIONS AND I HAD SEVERE SPINAL STENOSIS, AND TWO NEW KNEE REPLACEMENTS AND THEY FOUND 16 LESIONS IN MY HEAD WHICH AT THE POINT MIGHT BE THE START OF MS....
YEARS IN LIMBO AND TONS OF PAIN AND RELAPSE....TRIAL AND ERRA WITH DIFFERENT MEDS...
2010 NECK FUSION DIDNT WORK ..1 OUT OF 6 SCREWS IS BACKING OUT AND FUSION DIDNT TAKE PROPERLY PAIND DIDNT LET UP NOR DID THE HEADACHES
2012...ALL NEW DRS AND SECOND OPINIONS ..NUMBNESS IS NOW IN BOTH ARMS HANDS AND FEET TINGLING OF THE FACE NOSE AND LIPS, I GET THE CREEPY CRAWLY IN MY HEAD AS IF I HAD BUGS CRAWLING UP MY NECK IN MY SHOULDER AND HEAD...I LEAVE FAMILY AND FRIENDS FUNCTIONS AND OUTINGS BECAUSE I GET HEADACHES SO BAD I SLURR MY SPEECH AND STUTTER . I SOMETIMES GET CONFUSED WHEN DRIVING THAT IS WHEN IM NOT TO WEAK TO DRIVE. I GET OVERWHELMED IN MAKING SIMPLE CHOICES OR COUNTING CHANGE...MY BODY TWICHES WHEN IT WANTS AND I HAVE MUSCLE SPASMS I CANT CONTROL. I HAVE A HARD TIME SWALLOWING MY OWN SPIT NEVER MIND A PILL. MY SYMPTOMS ARE NEVER THE SAME ON ANY GIVEN DAY AND I NEVER KNOW WHICH MONSTER IS ON THE ATTACK THAT DAY...I SUFFER FROM IRON AND VITAMAN DIFICIANCIES..DUE TO GAST. BYPASS. I GET IRON INFUSIONS EVERY SO OFTEN TO OFF SET MY SYSTEM...
SOME DAYS I CANT MOVE ...JUST DONT KNOW WHAT DAY IM GONNA HAVE ...
APRIL 10 TH DR INSIST ON SPINAL TAP TO CONFIRM OR DENY MS. I WILLL HAVE MY TEST AT 4 PM TODAY....BUT WHAT IS THE POINT IF THIS TEST IS WHAT DETERMINES MY TREATMENT...IF NEGATIVE ...WHAT THE HELL IS WRONG WITH ME....NOT THAT I WANT MS BECAUSE I DONT....BUT I DO WANT ANSWERS AND TREATMENT OF SOME SORT MY QUALITY OF LIFE AND MY SELF HAS CHANGED TO SOMEONE WHO ISNT ME.....I WANT HELP AND ALMOST 5 YEARS LATER CANT FIND IT...CAN ANYONE GIVE ME SOUND ADVISE OR A BETTER DOCTOR IN NORTHERN NJ .....THANK YOU ROSEMARIE
4/10/12 8:50am
IM SO NERVOUS ABOUT MY SPINAL TAP...DOES ANYONE KNOW HOW LONG RESULTS TAKE...AND HAS ANYONE COME OUT NEGATIVE AND YET STILL BE GIVEN MEDS FOR MS BECAUSE OF ALL THE OTHER SYMPTOMS...AND RELAPSES
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By kim0324— Last Modified: 04/11/12, First Published: 05/16/08
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Can I ask what your symptoms are? I have had a CT Scan and MRI that showed white brain tissue. My EP tests were all normal and my spinal tap was normal. Not that I especially want MS but I would like to know what is wrong with me.