Aa
Finally Diagnosed with MS
I FINALLY had my appt today at the Rocky Mtn MS Center in Denver.
I brought all of my neurologist & opthamologist notes, my labs, & all of my MRIs.
Previously, my (old) neurologist said that I had only 1 lesion on my thoracic spine, based on what the radiologist said. But he never looked at the MRIs himself. Also, I found in his notes that he doubts that I actually had optic neuritis.
Flash forward to the new MS specialist neurologist that I met with today - he did a neurological exam, including tests on my eyes, and personally reviewed all of my MRIs himself (thank goodness). Like the opthamologist, he did find optic neuritis in both eyes - I have pale optic discs and my pupils don't dialate correctly.
Also, this is the big one - I have 8 LESIONS! Six are in my brain, one fairly large one in my cervical spine, and the one I already knew about in my thoracic (mid-back) spine. And I've had at least 3 clinical attacks. He wanted to know who the crazy doctor was that I had been seeing.
He's running a couple more tests to absolutely rule out anything else and he's sending me for more MRIs to see if I'm progressing.
He said that he definitely thinks that I have MS. I'm going back to see him in early September. We'll start discussing me starting to take disease modifying drugs (DMDs) for it. He said probably Copaxone. We'll see.
I'm so glad that I found out about the Rocky Mtn MS Center. And I can FINALLY start moving forward! Thank you Quix for letting me know that the center even existed. I would still be lost without you. :-)
Thanks,
Kelly
I brought all of my neurologist & opthamologist notes, my labs, & all of my MRIs.
Previously, my (old) neurologist said that I had only 1 lesion on my thoracic spine, based on what the radiologist said. But he never looked at the MRIs himself. Also, I found in his notes that he doubts that I actually had optic neuritis.
Flash forward to the new MS specialist neurologist that I met with today - he did a neurological exam, including tests on my eyes, and personally reviewed all of my MRIs himself (thank goodness). Like the opthamologist, he did find optic neuritis in both eyes - I have pale optic discs and my pupils don't dialate correctly.
Also, this is the big one - I have 8 LESIONS! Six are in my brain, one fairly large one in my cervical spine, and the one I already knew about in my thoracic (mid-back) spine. And I've had at least 3 clinical attacks. He wanted to know who the crazy doctor was that I had been seeing.
He's running a couple more tests to absolutely rule out anything else and he's sending me for more MRIs to see if I'm progressing.
He said that he definitely thinks that I have MS. I'm going back to see him in early September. We'll start discussing me starting to take disease modifying drugs (DMDs) for it. He said probably Copaxone. We'll see.
I'm so glad that I found out about the Rocky Mtn MS Center. And I can FINALLY start moving forward! Thank you Quix for letting me know that the center even existed. I would still be lost without you. :-)
Thanks,
Kelly
Kelly,
I am glad you finally received a diagnosis but am sorry it is MS. Just remember we are here to help you through this MS maze. Those diagnosed have been there and can help with the particulars. Those in limboland can and will still offer support and understanding.
On the bright side, it sounds like you've got a great neuro. That's a huge plus in your favor!
Hang in there and remember we are here,
Ren
I am glad you finally received a diagnosis but am sorry it is MS. Just remember we are here to help you through this MS maze. Those diagnosed have been there and can help with the particulars. Those in limboland can and will still offer support and understanding.
On the bright side, it sounds like you've got a great neuro. That's a huge plus in your favor!
Hang in there and remember we are here,
Ren
I'm thrilled for you!! Thrilled!!
I heard a great speaker from that center who came to our state last year to speak about MS. He was the only MD I ever heard mention the importance of MRI magnet strength!!
I'm gonna keep Rocky Mt. Center in mind in case I don't get diagnosed with something else first (like ALS.- Keep seeing more wasting in my arms)
Congrats on escaping the hellish existence of Limboland and congrats on ending up with such a terrific disease support group! I can't think of a more engaging and wonderful group to hang out with than MSers!!
WAF
I heard a great speaker from that center who came to our state last year to speak about MS. He was the only MD I ever heard mention the importance of MRI magnet strength!!
I'm gonna keep Rocky Mt. Center in mind in case I don't get diagnosed with something else first (like ALS.- Keep seeing more wasting in my arms)
Congrats on escaping the hellish existence of Limboland and congrats on ending up with such a terrific disease support group! I can't think of a more engaging and wonderful group to hang out with than MSers!!
WAF
GOOD MORNING KELLY,
FIRST LET ME REPEAT EVERYONE ELSE. I AM BOTH HAPPY AND SAD. IAM GLAD YOUR JOURNEY IS OVER LOOKING FOR A NAME FOR YOUR PAIN.
I AM SAD THAT THIS IS THE NAME. I AM HAPPY THE NAME WAS NOT SOMETHING THAT WAS WORSE YET. I HAVE CRIED AND I HAVE LAUGHED AT MYSELF FOR CRYING FOR THE WORRY OF IT ALL.
KNOW THAT GOD IS WITH YOU EVERY STEP OF THE WAY. AND WE ARE HERE AS WELL
MISSY
FIRST LET ME REPEAT EVERYONE ELSE. I AM BOTH HAPPY AND SAD. IAM GLAD YOUR JOURNEY IS OVER LOOKING FOR A NAME FOR YOUR PAIN.
I AM SAD THAT THIS IS THE NAME. I AM HAPPY THE NAME WAS NOT SOMETHING THAT WAS WORSE YET. I HAVE CRIED AND I HAVE LAUGHED AT MYSELF FOR CRYING FOR THE WORRY OF IT ALL.
KNOW THAT GOD IS WITH YOU EVERY STEP OF THE WAY. AND WE ARE HERE AS WELL
MISSY
I'm glad you've got answers - I'm so sorry it's MS! Sounds like you have a keeper in the neurology world.
I know just how you are feeling...after 3 years of symptoms and a doctor who told me its nothing not to worry about it... I finally found a great caring Ms specialist. I was just diagnosed July22nd and am waiting to start copaxone.
I have a lot of mixed emotions...Im glad I can now start to fight .. But now reality is setting in on just how big of a fight this is going to be...
best of luck to you on your journey...Im so glad this site is here when we need it :) Linda
I have a lot of mixed emotions...Im glad I can now start to fight .. But now reality is setting in on just how big of a fight this is going to be...
best of luck to you on your journey...Im so glad this site is here when we need it :) Linda
Hi Kelly,Iam Soo happy to hear you finally found someone to listen to you and put the symptoms together.As we all no it can be a big puzzle,I myself got tired of doctors putting off my symptoms an finally went to an Ms specialist for answers.I definitely see the difference,But anyways congrats,and best wishes,good luck:)
Glad you have your answer. You may still have a bit of a roller coater of emotions.
Alex
Alex
Hi Kelly
Commiserations that you have MS but congratulations that you listenened to your own gut instinct and did something about it. From your previous posts there were indicators that you were having neurological symptoms and above all it seemed that you knew something was seriously worng. Thank goodness that Q gave you a sound lead and that you are now in good hands.
Take care adng ive yourself time to come to terms with dx. It is in some ways a relief and as Q says the euphoria then wears off when it sinks in what this really means.
With love and hugs
Sarah x
Commiserations that you have MS but congratulations that you listenened to your own gut instinct and did something about it. From your previous posts there were indicators that you were having neurological symptoms and above all it seemed that you knew something was seriously worng. Thank goodness that Q gave you a sound lead and that you are now in good hands.
Take care adng ive yourself time to come to terms with dx. It is in some ways a relief and as Q says the euphoria then wears off when it sinks in what this really means.
With love and hugs
Sarah x
Kelly,
Of course we don't want you to have MS, but it will sure help you to have answers and know the name of the beast you are battling.
Rocky Mtn has such a good reputation - I'm glad that continues to be true.
We're here when you want to start asking more questions.
Welcome to the club.
Lulu
Of course we don't want you to have MS, but it will sure help you to have answers and know the name of the beast you are battling.
Rocky Mtn has such a good reputation - I'm glad that continues to be true.
We're here when you want to start asking more questions.
Welcome to the club.
Lulu
Kelly, I'm so happy that you have finally found a neuro. that has diagnosed you and that cares about you. It's a relief isn't it. Waiting is so hard.
You definately won't forget this day----ever. I am relieved for you!!
Red
You definately won't forget this day----ever. I am relieved for you!!
Red
Thanks for your comments everyone.
Yes, I definitely feel that I'm in good hands now. Instead of spending my energy trying to figure out what it is that I have, I can finally funnel that energy elsewhere.
And Quix, I'm doing the Snoopy Dance with you.
:-) Kelly
Yes, I definitely feel that I'm in good hands now. Instead of spending my energy trying to figure out what it is that I have, I can finally funnel that energy elsewhere.
And Quix, I'm doing the Snoopy Dance with you.
:-) Kelly
Kelly,
I'm so glad that you found an intelligent and caring MS doctor! Once you see him again and start your DMD in September you can finally get off of the roller coaster of emotional b.s. and just deal with the best treatment for you and your MS!
Congrats on this major milestone. Keep us posted on how your visit goes and if you do end up choosing Copaxone.
Hugs,
Erin :)
Very sorry to learn of your diagnosis. It is reassuring that you will have top notch medical care. The Rocky Mtn facility is among the best. As I recall they offer complementary therapies as well as conventional medicine.
Your story illustrates the importance of consulting a MS specialist when MS is suspected, vs a general neurologist.
Your story illustrates the importance of consulting a MS specialist when MS is suspected, vs a general neurologist.
Well, well, I have to say that I am doing the virtual Snoopy Dance. You have happened upon a thinking, caring neurologist! I have good good vibes from all that I have read about the Rocky Mountain MS Center. I am so gald I didn't mislead you.
I think from the beginning I was appalled at your previous neuro. I still maintain that a neuro that does not look at their own MRIs and form their own opinion are doctors we must escape from.
No, I am not glad it is MS, niether am I surprised. And you are in competent hands. Bravo for the efforts to be complete in the work up. Now is when we need you to ask questions and let us support you as you celebrate and reel from the diagnosis. Literally, I was ready to have a diagnosis party when I finally got mine. However, a month later the bloom was off the rose and I was p!ssed. So it goes.
We are here for you.
We need to keep the Rocky Mtn Center in mind when people in the Rocky Mountain region at a loss to find decent neurologists.
Quix
I think from the beginning I was appalled at your previous neuro. I still maintain that a neuro that does not look at their own MRIs and form their own opinion are doctors we must escape from.
No, I am not glad it is MS, niether am I surprised. And you are in competent hands. Bravo for the efforts to be complete in the work up. Now is when we need you to ask questions and let us support you as you celebrate and reel from the diagnosis. Literally, I was ready to have a diagnosis party when I finally got mine. However, a month later the bloom was off the rose and I was p!ssed. So it goes.
We are here for you.
We need to keep the Rocky Mtn Center in mind when people in the Rocky Mountain region at a loss to find decent neurologists.
Quix
Glad you have answers and are on a patch for treatment.
Our CL leaders and other posters here are truly a gift from God.
John.......
Our CL leaders and other posters here are truly a gift from God.
John.......
Hi Kelly,
I am so sorry to hear that you have been diagnosed with MS, but I am also happy that you do indeed have a diagnosis and can begin taking DMDs and that you at least know what you are dealing with and have some type of answer for your problems. ( I hope this makes sense)
Your post shows how much we are really at the mercy of our doctors when it comes to being diagnosed. It sounds like our Q has really recommended a good neurologist for you. I think all neurologists should look at the MRI pics themselves as sometimes things can be missed by the radiologists. MS is such a complicated disease to diagnose and it seems that different neurologists seem to have different ideas. I am pleased that you will beable to start on DMDs and I am happy that you have found a good neurologist.
Expect to have mixed emotions about your diagnosis, many people on here seem elated to have an answer and then reality sinks in. (I am not diagnosed). This forum is a great place to get information and answers, vent with people who understand, cry, share etc. Welcome to the MS Forum, I don't think we have met yet, I have been around here for a long time, and plan to stay, although I most likely don't have MS.
Cheers,
Udkas.
I am so sorry to hear that you have been diagnosed with MS, but I am also happy that you do indeed have a diagnosis and can begin taking DMDs and that you at least know what you are dealing with and have some type of answer for your problems. ( I hope this makes sense)
Your post shows how much we are really at the mercy of our doctors when it comes to being diagnosed. It sounds like our Q has really recommended a good neurologist for you. I think all neurologists should look at the MRI pics themselves as sometimes things can be missed by the radiologists. MS is such a complicated disease to diagnose and it seems that different neurologists seem to have different ideas. I am pleased that you will beable to start on DMDs and I am happy that you have found a good neurologist.
Expect to have mixed emotions about your diagnosis, many people on here seem elated to have an answer and then reality sinks in. (I am not diagnosed). This forum is a great place to get information and answers, vent with people who understand, cry, share etc. Welcome to the MS Forum, I don't think we have met yet, I have been around here for a long time, and plan to stay, although I most likely don't have MS.
Cheers,
Udkas.
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