Aa
Update: Formal DX, New Doctor, Medication and Flexibility ~
It is official official. I met with my "2nd opinion" at Virgina Mason in Seattle this morning. I really liked her. She took time HERSELF to get my history, she reviewed my MRI and examined me then immmediately told me after, "It is fairly obvious we are dealing with MS." She explained why the other doctor might've opted to "wait and see" but she wouldn't have taken that route with me due to the frequency in my flares. She counted 5 since May 2010. :(
After discussion, she supported my taking Avonex until the new oral medication comes out in about 7 months. (It sounds like she will recommend my switching to that in about a year.) I will start in two weeks and titrate up to a normal dose. The part that was interesting? She takes a little bit different approach to Avonex/Rebif combo and will likely move between the two. (I guess they are the same drug.) It's kind of interesting to think about --- she said that Avonex comes in 40mg 1 x a week where Rebif comes in 22mg 3 x a week or 44mg 3 x week. It allows us lots of dosage options to play with so I can use both at the same time if needed. We can subtract, add to and switch back and forth between them as we feel might be needed to control the flares. She said it was a unique approach that most don't do. (I'll have to google it.)
We talked about frequency, ease and flexibility in treatment. She works off annual examinations with full CNS MRIs. I come in only if I feel the need to and have full access to any of her team by email or phone. Her hospital has a smaller clinic MUCH closer to my home where I can be seen by her partner and get my infusions without so much work. I had to drive 1 hour 15 minutes one way to get it at the other hospital. She explained to me the process of how they work the treatments as well and who I call to work that out.
I will attend a "Newly Diagnosed" class in about 6 weeks to go over more common questions regarding diagnosis, what they look for in MRI's, symptom management, nutrition/alternative therapies and excercise with the specialists in these areas. I feel like most the basis were covered. She was super easy to talk to. She was not ambiguous at all. I left today feeling like I understand and confidence my doctor and what to do moving forward. Yup, I am staying with her!!!
I am thankful to find a doctor who is a good fit for me now. Mostly, I am thankful to you all for listening and supporting me for the last 16 months trying to make my way through this winding road of limboland. What a mess. I'm still struggling a bit with the "drink more water and take vitamins. There is nothing wrong with your brain" attitude. I have to mentally fight the impact of feeling so discounted for so long. Sad.
God bless you all -
~Barb
After discussion, she supported my taking Avonex until the new oral medication comes out in about 7 months. (It sounds like she will recommend my switching to that in about a year.) I will start in two weeks and titrate up to a normal dose. The part that was interesting? She takes a little bit different approach to Avonex/Rebif combo and will likely move between the two. (I guess they are the same drug.) It's kind of interesting to think about --- she said that Avonex comes in 40mg 1 x a week where Rebif comes in 22mg 3 x a week or 44mg 3 x week. It allows us lots of dosage options to play with so I can use both at the same time if needed. We can subtract, add to and switch back and forth between them as we feel might be needed to control the flares. She said it was a unique approach that most don't do. (I'll have to google it.)
We talked about frequency, ease and flexibility in treatment. She works off annual examinations with full CNS MRIs. I come in only if I feel the need to and have full access to any of her team by email or phone. Her hospital has a smaller clinic MUCH closer to my home where I can be seen by her partner and get my infusions without so much work. I had to drive 1 hour 15 minutes one way to get it at the other hospital. She explained to me the process of how they work the treatments as well and who I call to work that out.
I will attend a "Newly Diagnosed" class in about 6 weeks to go over more common questions regarding diagnosis, what they look for in MRI's, symptom management, nutrition/alternative therapies and excercise with the specialists in these areas. I feel like most the basis were covered. She was super easy to talk to. She was not ambiguous at all. I left today feeling like I understand and confidence my doctor and what to do moving forward. Yup, I am staying with her!!!
I am thankful to find a doctor who is a good fit for me now. Mostly, I am thankful to you all for listening and supporting me for the last 16 months trying to make my way through this winding road of limboland. What a mess. I'm still struggling a bit with the "drink more water and take vitamins. There is nothing wrong with your brain" attitude. I have to mentally fight the impact of feeling so discounted for so long. Sad.
God bless you all -
~Barb
That's great! I'm glad you finally found somebody that knows what's going on. With any luck she can wash that 'bad neuro' taste out of your mouth!
Barb, I would have to say "Praise God".
You now can move forward with this with knowing you have a good MS specialist and you will be heard and treated with the correct meds etc.
Wow! What a blessing in the fact of the positives not for MS itself. I'm so glad for you and will pray that all meds work out for you and that the Lord will grant you the peace you have waited so long for.
I'm doing somewhat of a victory dance.LOL :)
In limbo I will cont' to wait for my day.:)
Take care and the best wishes are wished for you!
Hugs and blessings,
Tammy:)
You now can move forward with this with knowing you have a good MS specialist and you will be heard and treated with the correct meds etc.
Wow! What a blessing in the fact of the positives not for MS itself. I'm so glad for you and will pray that all meds work out for you and that the Lord will grant you the peace you have waited so long for.
I'm doing somewhat of a victory dance.LOL :)
In limbo I will cont' to wait for my day.:)
Take care and the best wishes are wished for you!
Hugs and blessings,
Tammy:)
Jens... I'm going to wash my mouth out with lots of minty mouthwash tonight...NO WATER! ;)
Tammy, I pray your answers will come soon. It is so hard to know something is wrong and not know for sure *what* you are fighting but I will stand beside you and do the victory dance when that day comes --- bittersweetly of course. *Hugs*
Tammy, I pray your answers will come soon. It is so hard to know something is wrong and not know for sure *what* you are fighting but I will stand beside you and do the victory dance when that day comes --- bittersweetly of course. *Hugs*
It's about time - I am so glad - you understand what that really means, right - that you got this answer and can begin tx. The mix of the avonex/rebif is interesting and I've not heard that one before, I will be at a neuro talk tomorrow and try to ask him about this approach.
I wonder what your insurance will say about authorizing both of these drugs? It doesn't matter, your doc sounds great and I am really happy for you.
Allow yourself some time to digest this news - it isn't easy, despite knowing it was coming. Be sure to be kind to yourself.
hugs,
L
I wonder what your insurance will say about authorizing both of these drugs? It doesn't matter, your doc sounds great and I am really happy for you.
Allow yourself some time to digest this news - it isn't easy, despite knowing it was coming. Be sure to be kind to yourself.
hugs,
L
It must be a good feeling to have some closure finally and be able to move forward. This doctor sounds great. I wish someone like her existed in my area! Just wondering: when you talk about the 5 flares you went through, what exactly happened during the flares?
Thanks.
Thanks.
That is great news. So do you think you can talk her into being cloned so that the rest of us can find good doctors? :)
Dennis
Dennis
Lulu - you and I were on the same page regarding insurance authorization. I'm not sure how all that works. I wasn't quite understanding how it would play out but she's an immunologist and working for one of our research facilities; I sensed she knew how to make it work.
Dennis - you could fly out here, it's beautiful in the PNW and very easy on the MS body. :) I think I truly lucked out here. One of our fellow board members mentioned her name to me ---thank you! --- and just I trusted my intuition on this after what she said.
Dennis - you could fly out here, it's beautiful in the PNW and very easy on the MS body. :) I think I truly lucked out here. One of our fellow board members mentioned her name to me ---thank you! --- and just I trusted my intuition on this after what she said.
The first three flares I didn't know what they were really until someone pointed out to me they were "flares" --- my doctor today explained to me how to tell.
5/2010: The first flare was the onset of symptoms. I only noticed muscle twitching/jerking (like tics) from my left leg, hip area and right arm. They started like when you fall asleep at night but I was experiencing them at a progressive rate and wide awake. I then had vibrations in my entire lower extremity after working out --- followed by two weeks of difficulty swallowing. This happened over a two to three month time frame.
10/2010 to 12/2010: The next flare which was the worst of all flares followed with lack of coordination/balance issues, MS hug, right leg lag, eyes bounced and slightly crossed, incontinence, sharp pains and buzzing around my body (mostly in my abdomen), dizziness, visual fog, pain, spelling errors, forgot words and sentences, fatigue and, muscle weakness along with dropping things. I also had pretty extreme muscle tightness in my neck.
2/2011: some facial or orbital eye pain, numbness surrounding my right eye and it appeared some right face weakness. This could have been just the residual damage from the flare above. (We did not count this.)
3/2011: added sharp facial pain. Right hand heaviness.
6/2011: significant vision issues, hearing fluctuations, clickd in my ears, right foot cramping and involuntary body movements (my right foot would move suddenly or I'd wake to find my right hand skaking itself.)
2/2012: Optic Neuritis along with more sensory, fatigue and weakness issues.
I have some symptoms that come in/out if my body is under stress or over-heated - vision issues, muscle cramping, hearing fluctuation/clicking are a few. There are a few symptoms that are a constitution check for me. The muscle twitching/jerking is nearly a constant...this never went away...it only continues to get worse during in flare. She said this likely will never go away since I've had it for two years. Fatigue and Muscle weakness increase when I'm flared and I lose cognitive abilities.
5/2010: The first flare was the onset of symptoms. I only noticed muscle twitching/jerking (like tics) from my left leg, hip area and right arm. They started like when you fall asleep at night but I was experiencing them at a progressive rate and wide awake. I then had vibrations in my entire lower extremity after working out --- followed by two weeks of difficulty swallowing. This happened over a two to three month time frame.
10/2010 to 12/2010: The next flare which was the worst of all flares followed with lack of coordination/balance issues, MS hug, right leg lag, eyes bounced and slightly crossed, incontinence, sharp pains and buzzing around my body (mostly in my abdomen), dizziness, visual fog, pain, spelling errors, forgot words and sentences, fatigue and, muscle weakness along with dropping things. I also had pretty extreme muscle tightness in my neck.
2/2011: some facial or orbital eye pain, numbness surrounding my right eye and it appeared some right face weakness. This could have been just the residual damage from the flare above. (We did not count this.)
3/2011: added sharp facial pain. Right hand heaviness.
6/2011: significant vision issues, hearing fluctuations, clickd in my ears, right foot cramping and involuntary body movements (my right foot would move suddenly or I'd wake to find my right hand skaking itself.)
2/2012: Optic Neuritis along with more sensory, fatigue and weakness issues.
I have some symptoms that come in/out if my body is under stress or over-heated - vision issues, muscle cramping, hearing fluctuation/clicking are a few. There are a few symptoms that are a constitution check for me. The muscle twitching/jerking is nearly a constant...this never went away...it only continues to get worse during in flare. She said this likely will never go away since I've had it for two years. Fatigue and Muscle weakness increase when I'm flared and I lose cognitive abilities.
Hey SS,
Well there you have it. Sounds to me the wait served you well to land in the hands of such a thorough professional. Glad you will be able to fight the MS with the best we have - I truly believe in the meds. They've served me well,and I wish this for you too.
I bumped up the dx'd thread so you can add your name to that. Too bad it's not a list of a lottery where we'll win something.....sigh. But it is a good way for us to know who is here and dx'd.
Well there you have it. Sounds to me the wait served you well to land in the hands of such a thorough professional. Glad you will be able to fight the MS with the best we have - I truly believe in the meds. They've served me well,and I wish this for you too.
I bumped up the dx'd thread so you can add your name to that. Too bad it's not a list of a lottery where we'll win something.....sigh. But it is a good way for us to know who is here and dx'd.
Sounds very good.
Alex
Alex
Oh I know it is beautiful out there. I have lived all over the US and that area is one of my favorites. I started my life long love affair with nature (Age 10) when my dad was stationed at Ft. Lewis. I think it was having to go though a snow tunnel to get to the gift shop on Mt, Ranier in July that cinched it for me.
I had looked into moving out that way before I bought my home here in TN. Once I do finish off remodeling my home and sell it I think I'll look again to see if I can find some place I can afford.
Dennis
I had looked into moving out that way before I bought my home here in TN. Once I do finish off remodeling my home and sell it I think I'll look again to see if I can find some place I can afford.
Dennis
"I bumped up the dx'd thread so you can add your name to that. Too bad it's not a list of a lottery where we'll win something.....sigh. But it is a good way for us to know who is here and dx'd. "
Okay, that hit the "reality" button for me.
Okay, that hit the "reality" button for me.
yes, reality bites. But you are so far ahead when you know who the enemy is- we can't battle the unknown.
It certainly is a battle. I need to count my blessings tonight. Ride the wave, huh Lulu?!?!
think of those wave riders - often down in the depths of the water, only to be pushed to the top of the crest. You are so right, all we can do is ride it as best as we can.
Ohhh, I love it!!!
"Wave riders - often down in the depths of water, only to be pushed to the top of the crest."
Awesome! Thank you.
"Wave riders - often down in the depths of water, only to be pushed to the top of the crest."
Awesome! Thank you.
Congratulations? :-) isn't it amazing how your world changes when you have a doc that's on your side?
Kyle
Kyle
Kyle,
I am a little numb truthfully. Although, I feel like I can fight this head on now instead of behind its back. ;)
I am a little introspective about this right now. I think once I get through the first month of shots and get a good feel of what else I can do to improve my health in these MS boundaries, I'm gonna be a little unsure of all this.
Baby steps--
I am a little numb truthfully. Although, I feel like I can fight this head on now instead of behind its back. ;)
I am a little introspective about this right now. I think once I get through the first month of shots and get a good feel of what else I can do to improve my health in these MS boundaries, I'm gonna be a little unsure of all this.
Baby steps--
Yup take babysteps - it is alot to take in all at once. But take on one challenge at a time and like Lulu said be kind to yourself. It is so important.
You are definitely lucky with where you live - I am dreading summer here already and it is only March but it is supposed to be 80 today and the mid atlantic humidity is not fun!
This is a hard "reality" to face but from all I have read and seen you will do fine - you are a strong woman and can handle this!
Be well - hugs
Tracy
You are definitely lucky with where you live - I am dreading summer here already and it is only March but it is supposed to be 80 today and the mid atlantic humidity is not fun!
This is a hard "reality" to face but from all I have read and seen you will do fine - you are a strong woman and can handle this!
Be well - hugs
Tracy
You can fight this head on now, because you know with certainty what you're fighting :-) There is still a whole lot of processing to do. You've just been told that you have a funky central nervous system and they can't make it unfunky.
It's hard not to be angry about the treatment you received from previous docs, but it's not all that productive :-) You now have a doc with whom you are in sync! Be glad of that while you adjust to your new routines.
Kyle
It's hard not to be angry about the treatment you received from previous docs, but it's not all that productive :-) You now have a doc with whom you are in sync! Be glad of that while you adjust to your new routines.
Kyle
Congratulations! I know what it is like to not have a dx when you know you should have a dx. Now you can move on!
I wish I could find a neuro like that in my area. I am on the hunt for one!
Take Care!!
I wish I could find a neuro like that in my area. I am on the hunt for one!
Take Care!!
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