Diagnosed... but not diagnosed...

[ch81]

Well, after my last post (http://www.medhelp.org/posts/show/513414?post_id=post_2882277) I had my MRIs and blood work done, and today was my follow up with my new Neurologist. He said that initially my MRI report had come back normal, but seeing that he had seen issues in my examination and given my history, he told the radiologist to look again. And sure enough they found one 4mm in the pons and a 2-3mm in my midbrain. By no means spectacular... but there.

So I asked him if I could be diagnosed with 2 lesions, and he said yes and no. He said that he probably could diagnosis given my history, my examination, and the now lesions, but he wants to hold off until he has a bit more information so we can treat this accordingly.

I was scheduled to have evoked potentials at the end of the month, but during my appointment he called the place and told them to work me in, and magically Tues I got back in. He also suggested a thoracic MRI just to cover all bases. We are still waiting for 1 blood test to return from the Mayo clinic. He said it was some sort of  new test, out a year or so, that looks for some variant of MS (no clue what he's talking about, Devics maybe?!?).

So he said if anything comes back validating MS I'm a firm diagnosis, until then I'm a possible. He offered to give me information of other patients who have volunteered to speak with newly diagnosed people to share experiences and offer guidance on treatment (which I find very supportive).

He did ask my if I was doing ok since I seemed so cool. And my response was "I have been waiting 7 months for this, and feel validated... I'm sure I'll be upset when its 100% official and medications are being discussed. But for now I am going to be satisfied that it has a name, it is treatable, and isn't a death sentence." So it looks like I'm in the club...  so now comes the happy for a diagnosis but sad for what that means time.  Luckily I'm moving into a new place this weekend and starting a new chapter in my personal life so I'm distracted by the blessings I have.

So the questions I'm not left with besides what variant is he looking for? How do you deal with this disease when starting a family (something in the next couple years for me)? Did you tell your coworkers or just those who needed to know? What have been success stories medication wise?

Thank you again for all your insight!

[Quixotic1]

Welcome back!  Yes, It does sound like the guy is pretty sure it is MS, but would like to see a little stronger evidence.  The fact that he was willing to re-evaluate the MRI after the exam is a very good sign of a conscientious doctor.  I am impressed.

About disclosure.  In general I recommend that families who are supportive of one another need to disclose, even if there is already stress.  A close family often feels betrayed if they do not know.

As for work, it is not anyone's business UNLESS it is affecting your work.  If that is happening people will, indeed, supply a reason for the problems.  Here it was marital problems or a terminal illness.  But if the problems included missed days, being less productive,  being "excessively" tired, often the people at work will supply the commonest reasons - drugs and alcohol.  Sometimes choice people need to be told.

Be aware if you tell the people at work that you are protected under the ADA, Americans with Disabilities Act.  You cannot be terminated because you have a serious illness.

Hope this helps, and I hope you stick around!

Quix

[ch81]

Thanks for your insight. I think disclosing to family hasn't been to bad (though if my mom calls with one more thing she learned on the internet she's gonna get it), its definitely going to be weird with work. I had a few coworkers who have watched me look for answers through the 3 attacks and have been very supportive. But due to the nature of my work it was quite obvious when something was wrong so the rest of the staff knows something is up. At this point I'm feeling like its none of their business, especially until I'm 100% diagnosed and being treated.

[doublevision1]

I'm glad you are making some headway with all of this; it is unfortunate that it all seems to be leading to a MS diagnosis, but as you say, as least you would know what you're dealing with, there are treatments, and it's by no means a death sentence.  I am impressed by the actions of your neurologist, he sounds particularly thorough, and that is invaluable.

Just to let you know that I was diagnosed based on 2 lesions (pons and c-spine) plus history of 2 distinct attacks.  My LP results were at the high end of normal, which is considered 'consistent with demyelinating disease'.  My impression though, is that it was the 2 lesions and 2 attacks that clinched my dx.

I'm about 7 months into my dx and I have disclosed only to close friends and a few family members, on a need to know basis.  Disclosure is an issue for me that I am struggling with.  

I recently posted about this and got a variety of interesting and helpful responses, you might want to check it out:
http://www.medhelp.org/posts/show/491214

I heard through the grapevine recently that some people had speculated that I was having marital problems and leaving my husband!  Others thought I might have a terminal illness.  I had hoped by saying nothing, I wouldn't be the object of discussion (or pity), but it seems that's not the case so maybe just coming out with it is a better approach.  

I have to say that I have received tons of support from most of those with whom I have disclosed.  There are a couple of friends who have seemed to disanced themselves, and I'm just leaving that alone for now.  I would say that my disclosure has actually strengthened a few of my friendships, which was unexpected and I'm really grateful for that.  So I'm really not sure why I don't want anyone else to know.  I guess it just makes it all that much more real.  And I'm sure for some people, it will forever change how they think of me.  I know I'm sick, but I don't want to be so identified with that.

This is such an individual matter.  I guess in the end you do what just feels right, based on the strength of your relationships, the degree that your MS (if that's what it is) is visible, how much support you want/need, etc.

I look forward to more posts from you to let us know how things progress.

Best regards,

db