Sheena, I am completely convinced that the mononucleosis might have triggered the MS. At least, that's what I tell myself. Honestly, before the mono I was super healthy (excercising 4-5 times a week) and honestly can't recall any other weird MS symptoms when I look back on my life. I am a college professor and I know one of those darn students (little germ boxes) got me sick!!! I have become so paranoid about getting sick again (and fearful that being sick will trigger a relapse) that I constantly swab my hands with purell. I've become a complete germ-a-phobe. After 9 months the mono turned into chronic tonsillitis which was helped by antibiotics. Ultimately, I got a tonsillectomy in Jan 2007 which made me feel a million times better. But then the eye problem started in July. And then the preliminary diagnosis in Sept. of MS based on the MRI. And lingering fever confused the doctors initially. I read somewhere that the bacteria clamydia pneumonia could also be a trigger for MS. Maybe I had that (causing tonsillitis) and Epstein Barr? I also think I had cytomegalovirus when I was 22 as I have antibodies to it. CMV is another mono like illness and I was deathly sick for several months. Actually, now that I think about it I had tingling in my face when I first got CMV. But I've never had it again.

Sheena, I'm also sorry you found out about your diagnosis by reading an MRI report. I would have been in complete shock too. I guess you are just 2 months along in this...I hope you are hanging in there.

By the way, the Rebif nurse who came to teach me how to inject (before I went on copaxone) told me he constantly hears stories about people who say "I was never sick in my life, always healthy, until the first symptoms of MS." He thinks for some people it is because our immune systems are in overdrive. For awhile the immune system kills off EVERYTHING very efficiently...then I guess then it turns on itself and you get MS.

Maybe I was genetically prone to MS because of my mother?? And then it got tripped by some virus or bacteria? But yes, Bird, it is weird that my mother was diagnosed with it a couple of weeks before I found out. Thanks for thinking of me. Maybe your father did have MS. The Mayo clinic doctors I saw just published an article that actually says it looks like the genetic predisposition most likely comes from the father's side. My mother has been having problems for a couple of years with her foot dragging. She has one big lesion on her spine and a couple of tiny unspecific looking ones on her brain. She completely ignored the MRI for a couple a years--probably in denial. They told her she has primary progressive. Unfortunately, my mother has never been good at nurturing her children and can only talk about herself. Ever since I told her I have MS she doesn't email as often (and rarely calls--but that was always a problem before). I just don't think she can deal.

Oh Erin, I bet your mono and the herpes virus definitely contributed to your MS. Thanks Doydie for the kind thoughts.

Natalie8, I will post later for you. For now - I hear you loud and clear in all areas. I too am a germ phobic due to ms.... So don't feel alone; it is ok. We are just trying to do all we know to protect ourself. That is fine and it does not make us strange. I think when you hear my complete story from the mono dx forward it may help you. This I will give you, but it is too long to try to post or pm now. I have been up all night and have to get my kid to school. BTW - never be sorry about how I learned of my MS. It was my choice and I would never take it back. I'm prob 1 in a thousand to make that choice. But, I needed to see it it alone. That is just me. What happened to you was not your choice! It was not right! Take Care ~Sheena~

I'm a little slow lately Natalie, welcome to the board ! I hope things get less difficult for you as time goes by. It seems like you have a great team on your side right now (including us ).

Hi Natalie, and to the forum.

It's interesting that they only recently started attributing headaches to MS, yet so many people were sent for their original MRI's because of that symptom. I think it is more common then the symptom-list gives it credit.

Geez, is your neuro the same guy as Keri's, by chance? The things they say. To be honest, up until the last year or so, I never heard anyone say that their neuro told them the extent of the 'damage' that they presented with. My doctors were up-front about it being MS, but they were very careful about giving out too many gory details. I think it is unnecessary and unfair to scare someone that way, especially when the dx alone is scary enough.

I haven't tried Copaxone, but the reaction you have described has reminded me to warn you about the "once in a blue moon, harmless, but scary" reaction that many people have experienced with Copaxone:

"Immediate Post-Injection Reaction

Approximately 10% of MS patients exposed to glatiramer acetate in premarketing studies experienced a constellation of symptoms immediately after injection that included flushing, chest pain, palpitations, anxiety, dyspnea, constriction of the throat, and urticaria. In clinical trials, the symptoms were generally transient and self-limited and did not require specific treatment. In general, these symptoms have their onset several months after the initiation of treatment, although they may occur earlier, and a given patient may experience one or several episodes of these symptoms."

http://www.rxlist.com/cgi/generic/glatiramer_ad.htm

I just wanted to mention that, in case no one else has, as it can be very frightening (but apparently harmless!) if it happens. (BTW, even if 10% experience this, it might not happen more then once in your lifetime on that med.)

Nice to meet you.

Cherie

Hi Cherie, I'm not even sure the Mayo doctor was trying to give me the "real extent" of the diagnosis. I wonder if he was just being flippant in saying my brain looked like swiss cheese and not actually considering how this might affect me as a newly diagnosed person. I think he truly thought he was being amusing. He really didn't offer any prognosis. Maybe he thought his description would compel me to take the medications since the Mayo usually does a "watch and wait approach?" I have to confess that at the time my husband and I just laughed it off because of his other behavior. While he was asking me about my medical history (the mono, the tonsillitis, the lingering fever...oh yeah and a rash after a bite in Washington DC a few months prior but that is a whole other story) I would answer his questions in detail-- he kept cutting me off saying "we don't care about that," "we don't care about that." We were so dumbfounded by his arrogance and rudeness that we kept joking afterward "Now, is that the 'royal we' or 'we the neurologists' at Mayo?" Oh yeah, and then he started going on about his own fibromyalgia, migraine headaches, and irritable bowel syndrome. Okay, so this doctor clearly has some issues...so why am I still letting this swiss cheese comment scare the crap out of me? Probably because he is a doctor at the all important Mayo clinic.

Welcome Natalie!

I'm so sorry about your bad experiences when first diagnosed! It would certainly help to use a little diplomacy and care for gosh sakes!

It sounds as though you're doing fairly well though, considering all that.

I remember my doctor telling me about a former patient, a professional ballerina that came in with a numb pinky finger. He looked at her MRI and there were huge white spots like cotton balls, and a very large black hole on top of that. He was amazed that she'd been so healthy on exam.

Anyway, I hope your case will be like that. With a scary looking MRI and little in the way of symptoms.

Cherie - you made me laugh when I saw your post about my doc being the same! (Alas, we are on different sides of the country)...

Anyhow, Natalie, I think Cherie is right - both of our docs did a great job of scaring the crud out of us...at least mine did me. Too bad he couldn't scare the MS right out of me, huh?

Based on things neuros said, I have decided to fight the MS aggressively - and I'm also at the same time trying to disregard how grim it was presented to me. I will fight this - and fight to keep my strength as much as I can!! There have been times in the last 3 months when I've felt absolutely defeated - okay, most of the last 3 months I have felt defeated - yet, oddly, at the same time I'm also fighting and not giving up or giving in.

Sometimes you just gotta pick yourself up and dust yourself off. Of course, I know that's hard when you know you'll either be kicked down again or you'll fall down on your own.... but somehow, I keep going!!

Best,

Keri

You are right, Keri. Sometimes you just have to pick yourself up and keep going. Your courage is inspiring. Sometimes I just can't believe there are doctors out there who are that insensitive and that clueless. How would they feel if they were on the other side? Keri, did you find another doctor? Wiz, I was struck by the ballerina story. Cotton balls and a big black hole but few symptoms--wow. I saw my therapist today (80% of her clients have MS) and she confirmed what everyone is saying on this board...that there is no correlation between lesion load and symptoms, necessarily. In fact, she told me that the she has talked frequently with the expert doc. of the MS clinic in my city and they describe it as the "X" factor. No one really knows why a person could have one lesion and lots of symptoms OR many lesions but few symptoms. Obviously there is a lot of uncertainty about how the brain functions. This is why she likes working with MS patients--because she believes that the X factor leaves a lot of room for hope and she has seen people improve against the odds or surprise the docs.

hi natalie and welcome,

i was just going to make the comment you made about sx's and lesions.
i've been on copaxone for 5 yrs and havn't had any side effects.
my neuro told me that it can take up to 8 mos for the drug to start taking effect so hang in there.

no one know what the future holds. not ill people, nor well people.
so keep doing what you're doing and live one day at a time.
make sure you have long term disability thru your work if possible.

hope to hear more of your posts.

Hi Natalie and welcome to Neurotalk!

Like everyone else, I am sorry you have reason to come here, but happy that you found us!

I hope you find answers to your questions, support when you are having problems, and fun when you just need to kick back and laugh a bit! Jump right in the pool and enjoy hanging out with us!