Copaxone occasionally makes me have to do #1 a lot at night. My dad (a nurse anesthetist) tells me that it's probably the Mannitol in the Copaxone that does that.

The C hasnt caused me any problems of that nature for awhile, other than giving me weird, vivid dreams (which usually isnt a problem) I really only get some site reactions from the shots, but those have been getting better since I learned how to inject myself manually. (great having a parent who's medically trained!)

Natalie - sorry that your experience was "traumatic" like that. I shared my story on a thread the other day, too.

I could say that I can "imagine" what it felt like to hear the swiss cheese comment...except that it's more that I know. My doctors have also put fear into me about the amounts, sizes, and locations of the lesions and the black holes.

Even worse - one neuro showed me the MRI. I saw my brain and the holes with my own eyes. Other than being able to turn to my good friend while we were looking at it, to say, "See, I do have a brain" - there was nothing humorous about that moment.

Three months later, I still have nightmares about what I saw.

As for hearing the news on the phone - I struggled with that, too. But as it has been said here - there is NO way to receive this news well. I don't think it was appropriate for my doc to tell me on the phone, but then I remembered that when I left his office to get my immediate MRI, I let him know that if he left for the weekend (it was a Friday morning) without letting me know what was wrong with me, I would hunt him down. Still, it was early enough in the day when he had the results that he should have had me come in to his office to get the results. I could have had support with me, instead of being alone.

Welcome, Natalie.... I'm new here, too. (diagnosed January 4, 2008)....there are some great people here...I've learned a lot.

~Keri

Natalie welcome to the group.

I'm sorry for why you are here, but not for you being here!

As for the gray spots in your MRI, those spots are lesions that did get permanently damaged, BUT THAT does not mean that the REST of your brain will have that happen. So please don't let that freak you out. Ask your neuro about this and have him explain it to you on people level and not doctor/scientist level!

Hello Natalie, and welcome.

I'm sorry that you were treated so insensitively by the doctors you consulted. Diagnosis is scary enough without having that to deal with as well.

The others have said all the right things about number lesions and placement of lesions, but I wanted you to know that even though I have lots of lesions (including spinal ones), I'm still doing OK 31 years after being diagnosed.

Thank you all for the support everyone. You seem like a great group of people.

My family doctor who gave me the news is not treating me for the MS. She is a good doctor but obviously very blunt. I now have a neurologist who specializes in MS and is quite smart and fairly decent as a person. The Mayo Clinic doctor was certainly a jerk, that's for sure. For the past month I've been seeing a psychologist and 80% of her clients have MS. Can you believe that? Wow, what a resource. I was surprised to find her. She said several things. First, she works with the MS Clinic here in my city participating in a 2 day training conference which includes visiting neurologists who come from all over to learn from the BIG expert. The expert neurologist who runs the clinic said he thinks that neurologists in general have very poor bedside manner and he wanted a workshop to remind them about the emotional component of the disease. The psychologist told me in her workshop that she asks the neurologists "what do you do when you tell a patient they have MS and they start to cry?" Sadly, most of them had no answer. One doctor even said "I just push the tissue box over but I don't deal well because I can't even handle it when my wife cries." Interesting, huh? She had some useful advice. She said that I need to create a new framework for thinking about the disease and abandon the "I have some bad news...you have a swiss cheese brain" framework. She believes that teaching yourself to think positively about the future (in other words replacing the message with a more hopeful one) goes along way in affecting the outcome of the disease. She has seen it in her patients. It sounds kind of hoakey, I know. But she keeps saying to me "why can't you be one of the people who does fairly well instead of thinking that you are going to have the worst outcome.

And Keri, I'm sorry to hear you are newly diagnosed too. It's hard isn't it, just trying to wrap you head around the whole thing? I got the phone call in early Sept. I can honestly say I am much better off mentally than I was 4 months ago or even 2 months ago. So hang in there!!

--Natalie

When my neuro confirmed to me that I have MS, (I was pretty sure I had it) he basically said, "Well, I think we can say that you have MS, but the good thing is, that your initial symptoms are usually associated with with a milder course of the disease..."

Of course, I dont always feel like the MS is mild, but I mostly just have sensory symptoms, and not anything that really interferes with movement (I do have some spasticity that's gotten a bit annoying at times)

I do think my neuro has a much better bedside manner than most doctors. Probably because he has a chronic, degenerative, debilitating disease too. I think he's capable of empathizing with his patients more than a lot of other doctors. (plus he's about a million years old now, he's probably had a lot of experience with learning a good bedside manner)

I have met a couple of people (before I even had an idea I had MS) that did have it, and they were having a horrible time with their MS. So, for the first year (and maybe still a little bit now) I've been terrified that I'll end up like those people with MS that I'd met.

I'm starting to calm down about it a bit now. Figuring that I can do what I can do, and I'm doing what I can do to slow down the MS. (taking my copaxone) I'm educating myself about MS and the other treatments and any of the new ones (I'm intrigued by Estriol and LDN)

If something bad happens, I know I'm going to hate it. But, I'll have to deal with it when it happens. I'm hoping that it doesnt happen. I want to be one of those people with MS who live to be 90something and hardly ever have problems with their MS.

I still complain about all the piddly crap that the MS does to me (numb toes the last two weeks and horrible Uhthoff's Phenomenon while I had a fever last week) I believe we all deserve the right to whine about our symptoms as much as we want to.

Welcome to our group Natalie. I'm glad that you are seeing an actual specialist and a pshychologist. It seems like you already are geting some insight into how all this is going to affect your life. Just settle in here. We ned you and you need us.

Welcome Natalie,

I too am new to MS with my DX in 2-08. I'm sorry your Dr had such a poor bedside manner. My brain could also be called such. I have too many lesions to count and 5 in all the wrong places. They call mine severe MS.

I too was DX out of the blue. I didn't get a call, but chose to find it out myself. This is the 1st time I have told this part of my story, as it were. I walked alone into the place I had my MRI and requested a hard copy of my MRI. I read it and really only recall "indication MS" stated on it. I even asked the recp. to verify the words. I was in total shock. This was my choice; it was not your choice to get a call or read it alone as I did. You should have been told in the office. I would have been told in office, if I had waited.

I belive now, I have had MS since 1995 when I was 1st dx with reoccurring mono and chronic fatigue. There is some evidence supporting Epstein-Barr as a trigger for MS. While it remains unclear, it is my belief mono is a trigger. Please ref http://www.medicinenet.com/script/ma...ticlekey=60980. This and many other studies are very interesting. We are all working in the dark here. I just wanted to toss it out since you mention mono.

I wish you all the best. Take Care ~Sheena~

Natalie,

I think your therapist is so right about a positive attitude. But being a newly dx patient, I want you to know that it is really important to go through all the grieving steps too! Then knock yourself in the butt and find a positive attitude!!!

I was thinking about you when I woke up this morning. For your mother to be just dx with it too is really weird! I believe my father was misdx because of his age....he was dx with Parkinson's, but the more I learn about MS, the more I believe that is what he had....

I had mono in late 1995/early 1996...along with an ever unpleasant case of shingles. (didnt know it was shingles until recently when I had to Google shingles for a friend)

I've read that if you have a case of shingles while you have mono, that is possibly one of the triggers for MS.