Dear group

I've never joined a message board or an online forum before. Nice to meet you all. I'm 40 years old. I got married for the first time 3 months before the diagnosis and my career is just taking off. Life seemed great. My diagnosis arrived completely out of the blue. I am still in shock yet slowly doing better. In July and Aug. 2007 I had mild blurred vision in one eye but still 20/20 vision. The first week of Sept. I got a headache. My family doctor said "let's do a MRI of your brain just to play it safe." Well, at 6 pm, exactly 1 hour after I got home from the MRI she called and said "I have some bad news. It doesn't look good. There are multiple lesions on your brain and you have MS." Needless to say, "I have some bad news" made it much worse than a simple matter of fact explanation of what was in the radiology report. Plus I was thinking I'd have more than 1 hour to wait on the report. The shock was so intense I actually fainted when I got off the phone. I've never fainted before!

Fast forward to December at the Mayo Clinic. I had other weird abnormal blood tests along the way and a lingering fever the whole time so they weren't sure if it truly was MS (even though I had the Dawsons Fingers on the MRI)--hence the trip to Mayo. The neurologist at the Mayo Clinic told me that yes I did have MS and not only did I have lesions but also some black holes and that my "brain looked punched out, just like swiss cheese." Now was that designed to make me feel better? He said, "we normally do wait and watch at the Mayo but these black holes show your brain can't heal so you need to go on a drug immediately." Oh yeah, and he was such an arrogant #*%*!!! Anyhow, my experience with alarmist doctors has made me deathly afraid of this disease. I started getting tremors in my hands, heart palpitations, and dizziness but since it resolved with tranquilizers I figure it was anxiety and not MS. Other than mild optic neuritis I haven't had any other symptoms but I can't get the swiss cheese comment out of my head. I worry that multiple lesions and black holes means I will have a bad case of MS. By the way, I started Copaxone 5 days ago (couldn't tolerate Rebiff). It has caused some nausea and headache but mostly anxiety and insomnia (as if I need more of that) and buzzy feelings (like drinking 20 cups of coffee). Has anyone on Copaxone experienced this and do the side effects eventually go away? I need some reassurance to ride it out for awhile because taking the shots is still a scary proposition.

Finally, I read so much about people who had longstanding problems with symptoms before being diagnosed, even for years, and people who once diagnosed look back and think, wow I've always had strange symptoms and now it makes sense. I can't relate to that. Before the optic neuritis I cannot for the life of me think of anything odd or abnormal...only that after having a bad case of mono in 2006, when I took a hot shower sometimes I felt abnormally fatigued. There is nothing really to look back on and say "oh yeah, it must have been MS all along." I think this adds to the shock.

Oh, and 3 weeks before my family doctor told me the "bad news" my mother got diagnosed with MS at 62. And even though we are not close at all, that freaked me out enough that I'm sure my diagnosis shortly after was even more traumatic.

Anyhow, thanks so much for listening to my story.

Natalie

I am glad you found this wonderful place with all these caring people. So sorry for what you are having to go through. I know you will get such a supportive response from so many folks here who know much more than I do. I've been dx since Dec. only... still learning the ropes.

I wish good luck to you and much comfort. You are in my prayers.

~Your Friend~

I can't believe they called you on the phone and hit you with that! No wonder you fainted! Bless your heart!

You are in good company here. You'll find all the support and understanding you're looking for!

good morning and welcome to the board group threads and or what ever ya want to call them,

you will find lots of helpful people on here and a lotof them have links and info to help you at least I have been fortunate enough so far.

Hello, Natalie and welcome to NeuroTalk.

Dontcha just love the tacked and diplomacy some doctors have

You will hear some people refer to their brain as "swiss cheese" but it can be those same people who live normal lives - normal for MS

This is a strange disease - you can have a lot of lesion with little if no disability and a few lesions with a higher level of disability.

Black holes indicate permanent axon damage but, the brain has the ability to re-route around the damage to form new pathways....to a point.

I wuld guess in time with knowledge of this disease you probably will find connections to this disease way before you were diagnosed. I have been diagnosed for 22 years. I have been able to trace some symptoms back to childhood and a few months ago I just had another symptom validated from childhood. Needless to say I was shocked when the validation/connection was made after all of these years with a symptom that I had never even considered a symptom but just strange and annoying when I was a kid.

Give yourself time adjust to your diagnosis. All of us go through the grieving process when diagnosed (dx'd).

Hi Natalie! Welcome to NeuroTalk!

It is hard to get used to it, that's for sure. I'm still not really used to it and it has been many years for me. The best tip I can offer you is to keep moving and doing as much as you can.

You'll find your way.

Hi Natalie

I'm sorry you had such a tactless doctor (twice!). You'd think they would learn some sort of decent bedside manner. And I'm just appalled that they would tell you over the phone!!

It's a shocking dx however you receive it, though. I've had RRMS since 2005 - about 2 1/2 years now. I was on Copaxone first but it wasn't effective for me so I'm on Betaseron now.

I think I've actually HAD my MS for several years before I was dx but just didn't know it. Looking back it all makes sense.

Like Snoopy said - the number of lesions really don't matter. It's the location of them. I have many lesions but not alot of disability other than fatigue, balance and gait issues. What earned me my dx was a bout with double vision. Several years prior to that both of my legs were numb but I just attributed it to a pinched nerve.

I'm glad you found this board - there are a lot of very friendly and helpful people here. When you feel like reading some lighthearted posts go to The Stumble Inn - that's where we let our hair down and get silly.

Just take it one day at a time - try not to get too freaked over any one thing. It just serves to make the symptoms worse. Ask anything you want on here - there's a wealth of knowledge in these people here.

Take care!

Kelly

HUGS Natalie ~!

You've come to a good place that is caring and very helpful. Stay with us and know that you are never alone, ok?

AS far as the "swiss cheese" comment..hmmm... seems it impressed this doctor. But not to give you a proper explanation is inhumane to me.

Ask your doctor to help you with these much needed answers.

Know that you are going to probably go through the stages of grieving. But again, remember, WE"LL be here to help you.

There is so much more information and treatments than ever before.

Hang in there with us,
Warmly, jan

Hi Natalie and Welcome.

Sorry you had to go through that with tactless docs.

Someone else mentioned it, but location of the leisons are more crucial for symptoms than the number. I only have twelve total, but they are in not so fun places and give me issues.

Copaxone gave me nausea for a couple of weeks when I first started, but that went away. I started to have some insomnia due to it too, and switched to taking my med in the morning. It has helped.

Welcome Natalie, I 'm so sorry as to the why, but so glad you found us.

Join in with us. You will learn more about what to expect from MS....and, you may even have some fun here.