How is this not multiple sclerosis

[Chavo2000]

My symptoms that started 8 weeks ago.

Sudden onset of dizzy and unbalance.
Fatigue
Not being able to concentrate
Weak knees

This new symptom has happened 3 days ago that I have this same twitch on my right foot, only twitches when I'm at rest and keeps me up at night.

Had a MRI six weeks after my first symptoms, my brain and neck, not my spine though.

Are my lesions mostly in my spine?

[SarahL2491]

yes you can have an MRI with a pacemaker!  Contact your cardiologist.  One has to be there with you (in my group, only one guy does it and only one day a week, which can be tricky to schedule) but basically your pacemaker rep is there, he reads your settings, turns the pacer off to preserve the settings, the cardiologist is in the room with the MRI tech, when they finish, you go back to the pacemaker guy and he re"installs" your settings and runs a test to make sure they are there and ok and you go home!  It works on all pacers after a certain year of installation; mine was put in about 2005.  I thought I could not too but my neuro said, oh yes you can!. I was 7 yrs finding my Dx but 30 in all from first flare (no MRI then)  Hope this helps you!

[kwarendorf]

While not the norm, it's possible to have lesions that do not appear on MRI's. It's also possible to have lesions in your thoracic or lumbar spine. Lesions in these areas are atypical of MS lesions, which generally effect the central nervous system (brain & c-spine)

Have you had other tests like blood work to rule out MS mimics, a lumbar puncture...

The most important component of an MS diagnosis is the clinical exam. MS is a clinical diagnosis supported by all of these other tests. Are you seeing a neurologist that specializes in MS? What does he/she say?

Kyle

[Chavo2000]

I only had 1 MRI two weeks after symptoms of brain and neck only, found nothing.

[kwarendorf]

Hi Boots-  

Sorry you're going through this, but you have found a good place to ask lots of questions. Everyone here has seen some version of the movie your watching now :-) If you noticed your first symptoms 8 weeks ago, and had your MRI 6 weeks after that, this means you had your MRI 2 weeks ago? Have you not spoken with your doc about the results?

Kyle

[Chavo2000]

Thanks for the response.. The only lab that was low was my vitamin d.

[sllowe]

Hi there,
Welcome. What you describe is not exclusive to MS - that would be why(if your doctor says no MS). Your neck is apart of your spine - it's the cervical spine.
Sorry for what you are going through - hope your doctor can get to the bottom of it.

[teetee8]

wow what a story...I will not complain again it only took three years for me to beDx. one reason is that i have a pacemaker and can not take MRI.this has been sense 2009 and i got my DX late 2012 After reading your story i will not complain.Praying that one day they will fine a way to take MRi for people with pacemaker.Thanks for sharing you journey.Love and Blessing unto you.

[HVAC]

Limbo is hard. We all want validation to know what is going on is real. We want a name and hopefully some symptom relief. I feel for you.


There are over 800 Neurological disorders and over 30 other diseases which are not Neurological which mimic MS or have the same symptoms. They knew I had a Neurological disorder and something was wrong with my brain stem in 1965 before MRIs or the other tests. I went to Neurologists my whole childhood. I went to the Mayo and Duke.

When I was an adult I forgot all about it until my GP got concerned. It took two years of testing to finally diagnose me with MS even though all my MRIs, Evoked Potentials, etc. were abnormal. No test rules MS in or out. Even when I had 12 o-bands on my LP they changed the diagnosis from MS to Lupus for one week. Then they ruled Lupus out. Finally after 46 years I was diagnosed with MS.

Some folks come to this forum and are diagnosed with MS and some with other things completely. Some people get a quick diagnosis and many wait years.

There are two important things to do. Get the symptoms dealt with even if you do not have a diagnosis and keep pushing until you get a diagnosis of some kind.

Neurologists work slow. They follow people over six months to year intervals to see changes. Unless you have a stroke they do not go fast. If you change Neurologist they often start from square one. For example when I saw my MS Specialist it was as if I had never seen a Neurologist before in my life. I had to be followed by him for a year and a half even though he said it couldn't be anything but MS. I had to have several MRIs, lots of blood tests, and he would not diagnose me with out a LP. Then after the LP more blood work to rule out a bunch of other diseases.

Ironically now that I am diagnosed things are slower. I see my MS Specialist every 16 months instead of every six months. That is fine with me since he does very little. He just examines me and looks at my MRI. He refers me to other specialists mostly. My GP still does all my symptom relief.

I thought I should be diagnosed quickly. I was glad to find I was not alone and that it was not just me.

Alex