Finally diagnosed on Friday!

[Nan4478]

I went to see my new primary care doctor on Friday. She spent nearly 2 hours going through my history, then looked at my MRI pictures herself (before reading the report!). I FINALLY found a doctor that cares. (Dr. G)

I was completely unprepared for a diagnosis because of the Neuro appointment a couple weeks ago where I got my hopes up for answers and got none. (Although she is a seizure Neuro, she should have looked at the MRI which she didn't- and she should have been able to explain why it was "abnormal")

So, after the history, exam, and test results Dr. G said "It appears that you have Multiple Sclerosis, we are going to get you set up at the UCSF MS clinic, Rheum, GI, and get you feeling better."

I was in shock at first, then I cried... over six years of being sick and I will be getting treatment soon!

Questions:
I have a seizure study scheduled for next week. Is this still necessary?

How long did it take you to get treatment after your diagnosis?

[Guitar_grrrl]

Nan,

I'm glad someone is looking after you and pointing you in good directions.  I, too, am recently diagnosed (3 weeks), and thinking of heading to UCSF (I'm within 1.5 hrs drive) myself.  I haven't started DMDs yet, but I think Copaxone will be my first line, just because of the low incidence of side effects.

Big local hugs,
Guitar_grrrl

[Sarahsmom46]

Just following up with you to see how you are doing?  

How did your appointment with the MS neuro go?  Did you all decide on a DMD?  It must be a rough time and I can sure relate.  I was finally diagnosed just one week ago today.

I hope and pray you are ok.  Check in with us when you get the chance.

Love and hugs,

Julie

[Lulu54]

Hi Nan,
I'm coming to this a bit late, but welcome to the other side of the mountain you have been climbing for so long.  This is quite the journey, and now your adventure continues in a new direction.

Take lots of notes, spend some time despairing over this and then get on with your life.  As Heather has said, most MS patients deal fine with this disease the rest of their life.

We're here for you - I hope we will see you around often.

My best,
Lulu

  

[doublevision1]

Facing this diagnosis is not an easy thing, and having drs that care [and are thorough and knowledgeable and prompt, etc etc], makes all the difference in the world.  It sounds like you are in very good hands.  I hope that you keep us posted and that you continue on with this forum.  There are so many here who can say that they truly know what you are going through, and we're all are happy to listen, share, advise, commiserate, and offer support, whatever you need.
Peace.
~doublevision~

[rendean]

Hi,
I recently joined the "newly diagnosed" along with Alex, Michelle and Charley (did I leave anybody out?). I will start my DMD Friday, I believe.

Happy to hear you are finally getting diagnosed so that you can get treatment.

And to echo what Charley said, the meltdowns will come. There's lots of support here, take advantage of it.

Good luck and "congratulations:

Ren

[MsWobbles]

Congratulations!  I'm so happy for you that your six-year ordeal and wheel-spinning run-around in limboland is finally over!!  

Make sure you sign up for the MSAA's quarterly publication called, "The Motivator."  The current issue has great info about meds used to treat the various MS symptoms!  They'll send you the magazine if you ask for it!!  Also, any books in MSAA;s lending library they will send you free-of-charge and they cover the return postage.

Now that you know for sure what you have, you will be able to deal with it!  Best of luck!

Weakandfalling  

[Nancy T]

Hi Nan--in that case, I would be reeeally mad if anyone else tried to "undiagnose" me! :)

Good that they are all on board together. Not good that you have MS, of course, but good that you have a diagnosis and can go forward knowing what you have.

Best of luck,

Nancy

[Nan4478]

Nancy,
My primary doctor consulted with the seizure neuro, and the MS Neuro to reach the diagnosis. Sorry to have left that out.

Charley,
Thank you for your thoughts, I hope you are able to do the same.

[Charley123]

I was diagnosed a week ago and have had several weepy meltdowns over the whole thing.  
All I know is that without support it's harder to deal with.  Please rely on those that are supportive as it helps tremendously to get through the tough moments. I wish you the best  and hope that you will continue to find good docs to work with, Charley

[Nancy T]

I may well be wrong, but I thought only a neurologist could officially diagnose MS.

If it was your primary-care doctor (not a neurologist) who diagnosed you with MS, the next neurologist you see may or may not agree.

Good luck--you are lucky to have such a thorough and caring PCP. Hope all goes well with your appointments and treatments.

Nancy

[sllowe]

Wow, actually said "get you to feeling better!" I'm thoroughly impressed.

Good for you and you may be getting in tomorrow - this is even better news.

I would move forward with the seizure test.  If you've never experienced these iin the past, and you are in the middle of an attack, you very well could have them.

You can not make a bad choice where the DMDs are concerned.  They are all equally effective.  We have discussed them here a lot, but it might be good to get through this next appt., then I'll bump up a few past discussions on them for you.  

I'm so glad you are in good hands.  Hope this carries through at UCSF.

[HVAC]

Welcome to the newly diagnosed. I am glad you are finally going to get the treatment you need.

For me the Interferons were off the table do to medical reasons so copaxone is my only choice. Your Dr. will  probably go over the pros and cons and then a you decide.

I have not started it because it took three weeks to get the insurance to o.k. it.

Good luck Alex

[Nan4478]

Thank you for your support, it really helps to know that I am not all alone.

I just got a call from the MS center, they are trying to get me in tomorrow or Wed.
WOW, I can't believe that I have finally found not only a diagnosis, but doctors that care about me.

I have been having episodes that may be absence seizures. They only last 15-45 seconds usually, sometimes more. During this time I zone out and am unresponsive, I do not remember them. I get a headache behind my left eye afterward. Could these be migraines?

How do your choose which DMD is the best?

[Wobbly]

well you finally have a Dx... isn't good in one way, but you have answers and a direction which I hope will give you some relief...I know it sounds weird to think that...

take care and we are here for you... learn all you can and good luck with the other testing..

wobbly
undx

[Heather3418]

I know that all of us that are diagnosed, have mixed emotions when the diagnosis is finally made and we hear the words, "Multiple Sclerosis."  We experience fear, anger, elation, denial, sadness and the list goes on....

These emotions will hit you out of the blue from time to time.  Please remember that the majority of people with MS are NOT in wheelchairs and live a full and long life.  There will bumps along the road, but that's when you come here and get the support of the Forum Family and hopefully, your family and friends.

Just as with any diagnosis of a chronic and altering diagnosis, MS is no different.  We fight it the best we know how.  There will come a day, when your day is not filled with the , "I have MS."  It really will.  Then there will be times when it consumes you.  It's one those days, you have to pull yourself and live each minute as best as you can.  I really believe that a cure will be found in our lifetime.  Now if they can just find a way to reverse the damage.  That's the day, I will celebrate my second birthday.  It will be like being re-born again....

You need a group Forum hug, so here it comes......

(((((((((((((HHHHHUUUUUUGGGGGSSSSSS))))))))))

Heather

[essdipity]

Hi, Nan. An odd form of congratulations are in order, but I know you understand what I mean. What a great PCP! We should have a hall of fame for the good docs, to go along with the weanie roasts for the others.

Yes, you should go ahead with your seizure study. It's good to have full information, and it's quite possible to have seizures as well as MS, though the two aren't related.

If you see a good MS neuro, he or she will prescribe a DMD at your first appointment, or give you a bit of time to decide which one you choose. (It's usually done that way.) Then after that, it's just a matter of making contact with the drug manufacturer, getting the insurance okay, and usually, having a visit from the DMD nurse to help you with your first injection. All that can take a couple of weeks, but that's about it.

Go ahead and have a good cry. It's therapeutic. But don't be terrified. This is the beginning of the rest of your life, and you'll have lots of support from this forum. Feel better, and hang in there.

ess

[Nan4478]

P.S.
This site has helped me so much. Your knowledge and support is amazing, I would be lost without all the information on here. Thank you!

I am happy to finally have answers, but am terrified that I have MS. At least I know what I am fighting now.