could it be ms?

[dormanmom]

I have just been diagnosed with optic neuritis.   After spending time researching I think I may have MS but since I went to an optical neurologist he didn't ask about any other symptoms.  He was primarily focusing on my eyes.  My eye started hurting months ago after a pretty nasty cold virus, even after the virus seemed to have passed i still would have continuous heart palpitations, pain everywhere, vertigo/dizziness after a hot shower, forgetfulness and problems with speech and forming thoughts and sentences (esp. during pms), problems spelling and typing (very untypical)

All these symptoms has gotten me thinking.....   About four years ago I had similar symptoms, except they included electric shocks running through my legs that were so bad they would wake me up at night.  My Dr. didn't know what to do with me, after about three visits and blood-work he "finally" referred me to a infectious disease specialist, who basically just said "honey you are just pretty sick... looks like you've got CMV, a reactivation of Epstein Barr, toxoplasmosis, and some herpes think going on (dont remember which one).  He treated me to the toxo but I have NEVER felt 100% since, esp during PMS time.   I have been dismissing this to hormones, but its so bad I have a REALLY hard time expressing myself and finding words.

My MRI came back with no lesions but an inflamed optic nerve, funny not the actual one that is hurting.  I waited months to see the Dr about this as I didn't experience a vision loss, just dimming, but that went away pretty quickly, and I did have insurance so I though I would wait and see.    Could any delyminating (sure I spelled that wrong, sorry) that was happening have healed in the months between onset and now?  

I am just wondering, should I pursue this further or just wait and see?   Can they diagnosis MS is you are not currently having an exacerbation?

I was reading symptoms and actually started to cry because maybe, just maybe I can finally explain things that I have been dealing with like bladder hesitation, cognitive problems (including very simple math, dizziness, my are falling asleep regularly, heart palpitations, at night and a whole bunch of others.

[dormanmom]

I think I will look into another neurologist that specializes in MS. Thank you for that suggestion.   I am fairly certain that I do have MS, although its had a couple years between flare ups.    Not only because the ON but it's like I go through the list of symptoms and I basically have about 75% of them.  I was begining to think I was getting alzhimers and I am only 45.  My hands are  weak and painful and sometime I tell my fingers to do one thing and decide to do whatever they what to do, now after my last attack in Jan.

I did find out today that my MRI was on a 1.5T machine, I believe that my optical neurologist is going to order another when I follow up in a month.  I am going to use a different center with a stronger machine.  Maybe a C-spine too, because he only ordered a brain and optics.

Does the damage continue to take place between flare-ups?  I would hate to think that I can go a year or so before the next one and not have a diagnosis while the damage continues.

Thank you both so much for responding, I have friends to talk too but I am not comfortable discussing this at length and I dont think they understand because I dont have a diagnosis.  I have heard things like "ok, the MRI was fine, why do you want to make yourself sick" but it's not like that, I have been dealing with this for years, now it's gotten worse and I really need to be able to lable whats going on.

Thanks again, and God bless.
Cathie

[Lulu54]

Hi and welcome to the forum here.  As Kyle has already demonstrated, this is a pretty smart and compassionate group.  

Now on to your questions -
we know optic neuritis is often the first presentation of Multiple Sclerosis.  It is a fairly large percentage of people with ON who go on to develop MS.  I'm thinking that number hovers around 45% but someone will correct me if I am wrong.

Having ON does not mean you will have MS.  Not having ON (I have never had it) doesn't mean we can't get MS.  Like everything else with this disease, there is never any pattern and we all differ in how the disease presents.

If I were you, I would want a referral to a neurologist for further testing - and especially ask for one who specializes in Mulitiple Sclerosis.  Not all neurologists are well versed in this disease.  

As Kyle said, there are a number of tests that need to be run to start eliminating other possible causes of your problems.  And yes, the diagnosis can happen even if you are not in a flare at the time, we know there are always symptoms left behind when the disease goes into remission.  

I am sorry that you are hunting for answers, but hope you will come back here often and feel comfortable in asking your questions.

be well,
L  

[kwarendorf]

Hi MD - Sorry your having a tough go of it. There are many things that could be the cause of your optic nerve issues. MS is on of them.

The first thing they look for, after a thorough clinical exam, is the presence of lesions in MRI's of your brain and c-spine. These studies are done both with and without contrast. The contrast allows them to tell the difference between old and new lesions. Demyelination that has "healed" would show up as an old lesion.

You said they didn't find any lesions on your MRI. It is possible to have MS and display symptoms without visible lesions. It can take a while for them to become visible. It's not possible to have MS without lesions though. Yes

There are other standard tests that are used to diagnose MS. These include MRI of the c-spine, blood tests to rule out MS mimics and a lumbar puncture. Have any of these test come up in discussions with your doctors?

Kyle