Aa
Sorry for the delay...but I am Baaaaack!
Well...I am not sure how to explain this because it hasn't happened before and I don't want to ruin it all by saying HOW WONDERFUL THIS DOCTOR IS!!! hehe
We will call him Dr. G. with the lovely Italian accent and the lovely PERSONALITY to boot!!! He came out into the waiting room and shook my and my hubby's hands and introduced himself and from then on it was a very interesting appoinment!
He began asking me questions starting with any allergies I have so I pulled out my trusty timeline that I spent the last 3 days cleaning up and he was stunned at what a wonderful timeline it was (Thanks Ada and all) and he sat an actually read throught the WHOLE THING!! Hubby and I kept looking at each other with that "who is this guy and can he really be in the same office as the Bonehead?" but we were sooo relieved! He did an in-office neuro exam and said there really is not any change as far as the last exam went that he had notes from Dr. Bonehead for but he actually looked in both of my eye with this fancy schmancy scope which is something that NO other neuro has done let alone my lying gp when I was having double vision...I don't think she even looked me in the eye period!
I asked him about DMD's of course and he actually explained why he isn't going to start me on the meds. He said that with the history of side effects I have had from the Topamax, Gabapentin and the Lyrica he feels that I would not benefit enough from the drugs right now to warrant having to live with the side effects. He said that my diease, while not inactive, is still there and he will keep a close eye on me and right now I am just suffering the effects of the lesions that are already present. He said that since I have not had any new symptoms the odds are that nothing will have changed. He will do an MRI and check me up again in 6 months unless something comes in the meantime he will see me immediately.
He asked me about my relationship with my lying gp and I tried to mince words but it was rather hard. He said that not having a good working relationship with my gp is detrimental to my health and he feels that it can be changed. His nurse said it sounded to her as though she freezes at the sound of MS and with a little guidance that can be helped. He will write a letter to her and let her know that if she has questions about my care she can contact him and he will help her out. I asked if he can send a gremlin to her office to ensure that all the work left unattended there gets done but unfortunately he didn't think so. hehe
He asked me what was done for me for the Trigeminal Neuralgia in the past and I told him that I was given IV steroids and the I asked if I could ask him a question. I asked him what the difference is between Trigeminal Neuralgia and Paratrigeminal Neuralgia and he said...get this...NOTHING!!! He said although a lesion doesn't show on my MRI in the area to cause this doesn't mean there isn't one there that is causing the problem. I asked him what strength my MRI was in Nov. 2007 and he said 1.5. I asked him if there were 3T or 7T MRI's in the hospital and he looked at me suddenly very differently. He suddenly realized that I had done my homework (or should I say someone like all of you have done it for me he he) and he really started to speak like he was speaking to someone that had done their homework. He said that should I have any changes in symptoms in the future he would try to get me into a higher strength MRI. I asked him if the Paratrigeminal Neuralgia is related to MS? He said unequivocally YES! Dr. Bonehead told me it wasn't and the Evil Neuro of course just didn't care.
Then the nurse piped up that she has something that she felt needed to be discussed. I said fine. She said that I should be careful about changing doctors the way I have been because when you have more than one doctor "it's like one hand doesn't know what the other is doing". WELL...you can bet I had something to say about that! I told them the saga about the evil neuro getting her panties in a knot when she wouldn't see me and I saw Dr. Bonehead. Dr. Bonehead tried all the meds on me (I left out the part about overdosing me) and finally did an MRI and then told me to get a second opinion (which I did). I told them that I went to the evil neuro and after a short neuro exam she told me that she didn't need to see me any more and that if I have any problems I would have to have my gp deal with it. I told her that when I told my lying gp about what the evil neuro had said that she responded with "but I don't know anything about MS!". Then I told her about the letter I received in response to my cry for help from the woman at the MS Society and her comments that I was "wasting health care dollars" and "doctor shopping". Well I have to say that as I looked around the room when I was done the doc and nurses chins were hanging and my hubby had the cutest smile on his face I have ever seen! I finished by saying that I don't want to cause trouble and it was Dr. Bonehead's nurse that said I could change doctor's no problem so what you are saying really doesn't mean anything to me. All I want is to ensure that I have a Neurologist that will work with my gp the way I am always being told it should be done. I said that in all my jobs, teamwork was highly pushed for a reason...things work better that way in the workplace and I feel that the same should be said for real life.
The nurse apologized and said that perhaps she should have asked me what circumstances had brought me to Dr. G. and Dr. G. (with the sexy Italian accent) agreed!
So, Dr. G. has put me on 500ml Solumedrol IV for three day to see if it will help the Paratrigeminal Neuralgia (PTM) and I am to call the nurse next week to let her know how I feel. I was soooooo overwhelmed with the treatment I received that I was in a fog after my IV treatment...I just came home and relaxed and revelled in this thing called life and the feeling that this is what happiness, contentment, feeling cared for. listened to and believed is all about. This is only my first appointment with this doctor but just knowing that he will be there and he is seriously going to follow up on me is a wonderful start from where I have been. I will keep at him about the follow up MRI's and the DMD's but for now this is a good place for me to be!
Lots of VERY RELIEVED HUGS,
Rena
We will call him Dr. G. with the lovely Italian accent and the lovely PERSONALITY to boot!!! He came out into the waiting room and shook my and my hubby's hands and introduced himself and from then on it was a very interesting appoinment!
He began asking me questions starting with any allergies I have so I pulled out my trusty timeline that I spent the last 3 days cleaning up and he was stunned at what a wonderful timeline it was (Thanks Ada and all) and he sat an actually read throught the WHOLE THING!! Hubby and I kept looking at each other with that "who is this guy and can he really be in the same office as the Bonehead?" but we were sooo relieved! He did an in-office neuro exam and said there really is not any change as far as the last exam went that he had notes from Dr. Bonehead for but he actually looked in both of my eye with this fancy schmancy scope which is something that NO other neuro has done let alone my lying gp when I was having double vision...I don't think she even looked me in the eye period!
I asked him about DMD's of course and he actually explained why he isn't going to start me on the meds. He said that with the history of side effects I have had from the Topamax, Gabapentin and the Lyrica he feels that I would not benefit enough from the drugs right now to warrant having to live with the side effects. He said that my diease, while not inactive, is still there and he will keep a close eye on me and right now I am just suffering the effects of the lesions that are already present. He said that since I have not had any new symptoms the odds are that nothing will have changed. He will do an MRI and check me up again in 6 months unless something comes in the meantime he will see me immediately.
He asked me about my relationship with my lying gp and I tried to mince words but it was rather hard. He said that not having a good working relationship with my gp is detrimental to my health and he feels that it can be changed. His nurse said it sounded to her as though she freezes at the sound of MS and with a little guidance that can be helped. He will write a letter to her and let her know that if she has questions about my care she can contact him and he will help her out. I asked if he can send a gremlin to her office to ensure that all the work left unattended there gets done but unfortunately he didn't think so. hehe
He asked me what was done for me for the Trigeminal Neuralgia in the past and I told him that I was given IV steroids and the I asked if I could ask him a question. I asked him what the difference is between Trigeminal Neuralgia and Paratrigeminal Neuralgia and he said...get this...NOTHING!!! He said although a lesion doesn't show on my MRI in the area to cause this doesn't mean there isn't one there that is causing the problem. I asked him what strength my MRI was in Nov. 2007 and he said 1.5. I asked him if there were 3T or 7T MRI's in the hospital and he looked at me suddenly very differently. He suddenly realized that I had done my homework (or should I say someone like all of you have done it for me he he) and he really started to speak like he was speaking to someone that had done their homework. He said that should I have any changes in symptoms in the future he would try to get me into a higher strength MRI. I asked him if the Paratrigeminal Neuralgia is related to MS? He said unequivocally YES! Dr. Bonehead told me it wasn't and the Evil Neuro of course just didn't care.
Then the nurse piped up that she has something that she felt needed to be discussed. I said fine. She said that I should be careful about changing doctors the way I have been because when you have more than one doctor "it's like one hand doesn't know what the other is doing". WELL...you can bet I had something to say about that! I told them the saga about the evil neuro getting her panties in a knot when she wouldn't see me and I saw Dr. Bonehead. Dr. Bonehead tried all the meds on me (I left out the part about overdosing me) and finally did an MRI and then told me to get a second opinion (which I did). I told them that I went to the evil neuro and after a short neuro exam she told me that she didn't need to see me any more and that if I have any problems I would have to have my gp deal with it. I told her that when I told my lying gp about what the evil neuro had said that she responded with "but I don't know anything about MS!". Then I told her about the letter I received in response to my cry for help from the woman at the MS Society and her comments that I was "wasting health care dollars" and "doctor shopping". Well I have to say that as I looked around the room when I was done the doc and nurses chins were hanging and my hubby had the cutest smile on his face I have ever seen! I finished by saying that I don't want to cause trouble and it was Dr. Bonehead's nurse that said I could change doctor's no problem so what you are saying really doesn't mean anything to me. All I want is to ensure that I have a Neurologist that will work with my gp the way I am always being told it should be done. I said that in all my jobs, teamwork was highly pushed for a reason...things work better that way in the workplace and I feel that the same should be said for real life.
The nurse apologized and said that perhaps she should have asked me what circumstances had brought me to Dr. G. and Dr. G. (with the sexy Italian accent) agreed!
So, Dr. G. has put me on 500ml Solumedrol IV for three day to see if it will help the Paratrigeminal Neuralgia (PTM) and I am to call the nurse next week to let her know how I feel. I was soooooo overwhelmed with the treatment I received that I was in a fog after my IV treatment...I just came home and relaxed and revelled in this thing called life and the feeling that this is what happiness, contentment, feeling cared for. listened to and believed is all about. This is only my first appointment with this doctor but just knowing that he will be there and he is seriously going to follow up on me is a wonderful start from where I have been. I will keep at him about the follow up MRI's and the DMD's but for now this is a good place for me to be!
Lots of VERY RELIEVED HUGS,
Rena
RENA,
FANTASTIC,I TOLD YA THINK POSITIVE AND BE CLEAR MINDED,IT MUST BE THE HUNKY ITALIAN NEURO'S THAT HAVE THE COMPASSION,I SEE MINE TOMORROW.
I SEE HIM EVERY 3 MONTHS,I KNOW UNUSUAL,BUT HE KEEPS A VERY CLOSE WATCH ON MY HEALTH.
T-LYNN
FANTASTIC,I TOLD YA THINK POSITIVE AND BE CLEAR MINDED,IT MUST BE THE HUNKY ITALIAN NEURO'S THAT HAVE THE COMPASSION,I SEE MINE TOMORROW.
I SEE HIM EVERY 3 MONTHS,I KNOW UNUSUAL,BUT HE KEEPS A VERY CLOSE WATCH ON MY HEALTH.
T-LYNN
Yes definitely, as Dr. G. is suspicious of progression to SPMS then what he is saying makes a lot of sense.
Talk about the pendulum swinging from one end ("inactive" MS) to the other.
My understanding is that one of the following more aggressive (and riskier) treatments may be used to treat some cases of SPMS:
- Novantrone (mitoxantrone)
- cyclophosphamide
- methotrexate
- cladribine
Does anyone have any firsthand knowledge (or any knowledge for that matter) re: treating SPMS?
Rena, if you have any interest in participating in a study, should you be eligible, let Dr. G. know this. They may be doing some work on SPMS at the U of A. It may be something he raises down the road with you, once he becomes more familiar with you and your history.
Hope you are feeling better tonight. Don't stress about the weight gain, give it a few days, a lot of it might be water retention, which is a side effect of the steroids. I usually need a diuretic when I do steroids.
db
Talk about the pendulum swinging from one end ("inactive" MS) to the other.
My understanding is that one of the following more aggressive (and riskier) treatments may be used to treat some cases of SPMS:
- Novantrone (mitoxantrone)
- cyclophosphamide
- methotrexate
- cladribine
Does anyone have any firsthand knowledge (or any knowledge for that matter) re: treating SPMS?
Rena, if you have any interest in participating in a study, should you be eligible, let Dr. G. know this. They may be doing some work on SPMS at the U of A. It may be something he raises down the road with you, once he becomes more familiar with you and your history.
Hope you are feeling better tonight. Don't stress about the weight gain, give it a few days, a lot of it might be water retention, which is a side effect of the steroids. I usually need a diuretic when I do steroids.
db
Hi Rena,
You sound like a huge weight has been lifted off your shoulders!!! I am just so happy for you, and it's about time you found someone who would listen to you!!
Take care of yourself and your pup babies!!!!
Love & Hugs,
doni
You sound like a huge weight has been lifted off your shoulders!!! I am just so happy for you, and it's about time you found someone who would listen to you!!
Take care of yourself and your pup babies!!!!
Love & Hugs,
doni
Well db was right...I just called Dr. G's office and spoke to Melissa and she is a very wonderful person that I think could be my newest bestest friend! I think she is soooo shiny she has rainbows coming out of her ears and I told her so too! hehe
Anyway, she said that Dr. G. is a little slow on his dictation but that it wouldn't be a problem at all to send me a copy of all the reports sent to the lying gp by the neuro. This way if she tries to say that she doesn't know about something or that she doesn't know what to do I will be able to follow up on it and I am sure c.c Rena will be on the bottom of all the letter so she will know to watch herself cause I sure will be watching her!
Well I had the Steroid house cleaning energy this a.m. and now I am feeling a little sore all over...especially my hips which apparently is normal. I stopped and bought my banana to replenish my potassium like a good little girl but I also found some banana bread and figure at least it would taste better! Then I found out my breakfast cereal is high in potassium so I should be ok there so I haven't eaten the dreaded banana yet!
Last steroid treatment today but they will have to put in a new IV port cause the other vein gave out yesterday...oh well, last one, I can handle it! I will keep all up to date as to what is going on and am trying to spend more time here and will try to help more. The puppy is doing GREAT and even went to sleep all curled up in my arms after hubby let her in the bedroom after he left for work this a.m... he usually puts her back in her pen but though he would give it a try and it worked! I am in absolute love with her and she is going to be my little snuggle bug!
Lots of Hugs,
Rena
Anyway, she said that Dr. G. is a little slow on his dictation but that it wouldn't be a problem at all to send me a copy of all the reports sent to the lying gp by the neuro. This way if she tries to say that she doesn't know about something or that she doesn't know what to do I will be able to follow up on it and I am sure c.c Rena will be on the bottom of all the letter so she will know to watch herself cause I sure will be watching her!
Well I had the Steroid house cleaning energy this a.m. and now I am feeling a little sore all over...especially my hips which apparently is normal. I stopped and bought my banana to replenish my potassium like a good little girl but I also found some banana bread and figure at least it would taste better! Then I found out my breakfast cereal is high in potassium so I should be ok there so I haven't eaten the dreaded banana yet!
Last steroid treatment today but they will have to put in a new IV port cause the other vein gave out yesterday...oh well, last one, I can handle it! I will keep all up to date as to what is going on and am trying to spend more time here and will try to help more. The puppy is doing GREAT and even went to sleep all curled up in my arms after hubby let her in the bedroom after he left for work this a.m... he usually puts her back in her pen but though he would give it a try and it worked! I am in absolute love with her and she is going to be my little snuggle bug!
Lots of Hugs,
Rena
A delay worth waiting for!
Oh Rena, I'm so happy for you. Can you feel my hugs?????
I'm glad to see the all in good time w/the DMDs..... Shouldn't be off the table because the benefits may far outweigh the side affects for some. I'm not telling you anything you dont' know here....
Couldn't be happier for you Rena Girl!!!!!!!!!!
xoxoxo
Shell
Oh Rena, I'm so happy for you. Can you feel my hugs?????
I'm glad to see the all in good time w/the DMDs..... Shouldn't be off the table because the benefits may far outweigh the side affects for some. I'm not telling you anything you dont' know here....
Couldn't be happier for you Rena Girl!!!!!!!!!!
xoxoxo
Shell
I'm very happy for you; reading your post made me feel good and happy and peaceful. Thanks!
Bunches and bunches of hugs,
Kathy
Bunches and bunches of hugs,
Kathy
Thanks for the kind words Wobbly...I hope that you get to find a good dr. soon...enough of the dilly dallying around by the ones you have right?
db...Dr. G. mentioned to me that it is likely that I have secondary progressive MS rather than RRMS so I guess that changes the whole picture. As he explained to me, the symptoms I am having are a result of the existing lesions and being that there haven't been any changes in my symptoms the odds are that there are no new lesions. I am a little concerned about that since I am having a lot of pins and needles in my left arm and leg and this is new but he didn't seem too concerned.
He did make a point of saying that he wanted to take the time to get to know my situation before giving me anything new and I had to agree because I can't imagine having someone come in that you have never seen before and really don't know and just give them some sort of medication just because the patient thinks she should have it. I know this is a change of tune for me with the DMD's but I figure it would be better to give the guy a chance. I will be in contact with him should things change and at least I feel like someone has my back should I need someone right?
You are right about the report to my gp...I willcall her tomorrow to see if I can get a copy of it...I sure wouldn't get it from the lying gp! P was the nurse that was in the appointment...I don't mind her too much but I think I have changed her attitude to me somewhat in that she knows I am not just playing some sort of game to waste time and money. I am in need of real medical help and she above all other should know about the way I was not being followed by Dr. W and him overdosing me. I will ask from now on that she not be in the appointments because I don't see what there is to gain from it and I don't want her passing info on to Dr. W and there is a loss of trust there.
So...I went for my 2nd infusion today and I am really tired tonight...my joints are throbbing and I need to lie down for a while. If I missed anything I will pick up on it tomorrow morning ok honey? Again, thanks for all your help and I will talk to you soon!
Lots and lots of Hugs,
Rena
db...Dr. G. mentioned to me that it is likely that I have secondary progressive MS rather than RRMS so I guess that changes the whole picture. As he explained to me, the symptoms I am having are a result of the existing lesions and being that there haven't been any changes in my symptoms the odds are that there are no new lesions. I am a little concerned about that since I am having a lot of pins and needles in my left arm and leg and this is new but he didn't seem too concerned.
He did make a point of saying that he wanted to take the time to get to know my situation before giving me anything new and I had to agree because I can't imagine having someone come in that you have never seen before and really don't know and just give them some sort of medication just because the patient thinks she should have it. I know this is a change of tune for me with the DMD's but I figure it would be better to give the guy a chance. I will be in contact with him should things change and at least I feel like someone has my back should I need someone right?
You are right about the report to my gp...I willcall her tomorrow to see if I can get a copy of it...I sure wouldn't get it from the lying gp! P was the nurse that was in the appointment...I don't mind her too much but I think I have changed her attitude to me somewhat in that she knows I am not just playing some sort of game to waste time and money. I am in need of real medical help and she above all other should know about the way I was not being followed by Dr. W and him overdosing me. I will ask from now on that she not be in the appointments because I don't see what there is to gain from it and I don't want her passing info on to Dr. W and there is a loss of trust there.
So...I went for my 2nd infusion today and I am really tired tonight...my joints are throbbing and I need to lie down for a while. If I missed anything I will pick up on it tomorrow morning ok honey? Again, thanks for all your help and I will talk to you soon!
Lots and lots of Hugs,
Rena
Hi, just back from my trip and catching up on a week's worth of posts. I was so so so happy when I got to this one! Thanks for providing such a thorough update.
It is SO wonderful that you are now in the capable hands of Dr. G. I don't know much about him, other than that he is well thought of by the on-call neuro's and residents that treated me at outpatients. Dr. B was their first choice to refer me to, Dr. G next, and I sensed a very deliberate avoidance of involving Dr. W. Now I know why.............
Dr. G's style sounds very much like Dr. B: the courteous manners, the active listening, taking the time to read your timeline, the interest in how your symptoms affect your life, the thorough exam, engaging your spouse, and most impressive, the not being threatened by an educated patient who asks intelligent questions about 3T MRI's! Gee, I wonder if these two attended the same medical school? Probably not if Dr. G. was educated in Italy, ha ha, but nonetheless they seem to have a very similar approach. I'm so glad you are so comfortable with him.
I am as puzzled as everyone here about his view on DMD's for you, I really don't understand. I do get where you're coming from with your approach though; there will be a time, hopefully soon, when you feel it is the right time to raise this issue again. You could ask him for any literature that would support NOT treating with DMD's in cases like yours; I think if this exists we would all be very interested. I am with Lulu re: Copaxone; other than the site injections, which get better for most pts over time, what side effects could possibly occur that outweigh the benefits of treatment? I wonder if Dr. B would be of the same mind? He recommended early treatment for me, and if you recall, was even thinking in terms of the aggressive drug Novantrone when my relapses were so close together. Our cases are quite different, but either way, DMD is always recommended for RRMS in everything I've read, as I'm sure you have found too.
In any event, Dr. G sounds committed to following you and hopefully another MRI will provide good information. Do you know how soon you can get one done? In the meantime I am glad you are being treated for the PTM and hope the steroids will give you some fast relief.
You know perhaps one possibility about his position on the DMD's is he may be biding some time to build a case for you to be eligible for the MS Drug Program. There is some criteria about having RRMS and having had two or more acute relapses in the past two years, in order to be eligible for the generous coverage. I think I sent you some material on that program, let me know if you need me to dig it up again. I'm not sure if you've ever mentioned what kind of supplemental health insurance you might have. Do you have drug coverage through your spouse's employer, or have the non-group in place yet? If so, you should let Dr. G know so if he has any concerns about ability to pay, he will understand your situation. I may be totally off base here, obviously I'm just speculating, and he did provide you with a medical reason for not starting you on any new drugs at this time, even though we don't quite understand it.
Did his nurse sit in on the whole appt? You handled her comments about changing doctors very well. Sounds like you were calm and assertive, good for you!
It surprised me a bit that she was in the room; usually there is a resident on rotation who sits in on my appt with Dr. B, then I see the nurse afterwards if there is anything for her to follow up on. Which nurse was it: P, or the other one? P. has been very helpful to me thus far, and you're right, Melissa is fantastic, always follows up on my calls, sends me copies of Dr. B's reports, and has been flexible moving my appts when needed. And she's just so nice, I wish all dr's offices had such helpful and friendly admin staff.
I am so happy at how this is working out for you. Yours is a great example for those here whom are discouraged, to never give up on seeking the care that you need. Hey maybe we'll cross paths in the waiting room some day! My next visit will be a quick one: flying down and back on the same day. But once of these days when there is time, we should finally meet for that coffee, or non-fat latte, whatever!
db
ps: make sure you get Melissa to mail you a copy of Dr. G's report!
It is SO wonderful that you are now in the capable hands of Dr. G. I don't know much about him, other than that he is well thought of by the on-call neuro's and residents that treated me at outpatients. Dr. B was their first choice to refer me to, Dr. G next, and I sensed a very deliberate avoidance of involving Dr. W. Now I know why.............
Dr. G's style sounds very much like Dr. B: the courteous manners, the active listening, taking the time to read your timeline, the interest in how your symptoms affect your life, the thorough exam, engaging your spouse, and most impressive, the not being threatened by an educated patient who asks intelligent questions about 3T MRI's! Gee, I wonder if these two attended the same medical school? Probably not if Dr. G. was educated in Italy, ha ha, but nonetheless they seem to have a very similar approach. I'm so glad you are so comfortable with him.
I am as puzzled as everyone here about his view on DMD's for you, I really don't understand. I do get where you're coming from with your approach though; there will be a time, hopefully soon, when you feel it is the right time to raise this issue again. You could ask him for any literature that would support NOT treating with DMD's in cases like yours; I think if this exists we would all be very interested. I am with Lulu re: Copaxone; other than the site injections, which get better for most pts over time, what side effects could possibly occur that outweigh the benefits of treatment? I wonder if Dr. B would be of the same mind? He recommended early treatment for me, and if you recall, was even thinking in terms of the aggressive drug Novantrone when my relapses were so close together. Our cases are quite different, but either way, DMD is always recommended for RRMS in everything I've read, as I'm sure you have found too.
In any event, Dr. G sounds committed to following you and hopefully another MRI will provide good information. Do you know how soon you can get one done? In the meantime I am glad you are being treated for the PTM and hope the steroids will give you some fast relief.
You know perhaps one possibility about his position on the DMD's is he may be biding some time to build a case for you to be eligible for the MS Drug Program. There is some criteria about having RRMS and having had two or more acute relapses in the past two years, in order to be eligible for the generous coverage. I think I sent you some material on that program, let me know if you need me to dig it up again. I'm not sure if you've ever mentioned what kind of supplemental health insurance you might have. Do you have drug coverage through your spouse's employer, or have the non-group in place yet? If so, you should let Dr. G know so if he has any concerns about ability to pay, he will understand your situation. I may be totally off base here, obviously I'm just speculating, and he did provide you with a medical reason for not starting you on any new drugs at this time, even though we don't quite understand it.
Did his nurse sit in on the whole appt? You handled her comments about changing doctors very well. Sounds like you were calm and assertive, good for you!
It surprised me a bit that she was in the room; usually there is a resident on rotation who sits in on my appt with Dr. B, then I see the nurse afterwards if there is anything for her to follow up on. Which nurse was it: P, or the other one? P. has been very helpful to me thus far, and you're right, Melissa is fantastic, always follows up on my calls, sends me copies of Dr. B's reports, and has been flexible moving my appts when needed. And she's just so nice, I wish all dr's offices had such helpful and friendly admin staff.
I am so happy at how this is working out for you. Yours is a great example for those here whom are discouraged, to never give up on seeking the care that you need. Hey maybe we'll cross paths in the waiting room some day! My next visit will be a quick one: flying down and back on the same day. But once of these days when there is time, we should finally meet for that coffee, or non-fat latte, whatever!
db
ps: make sure you get Melissa to mail you a copy of Dr. G's report!
Hi there...IT'S SOOOO GOOD TO HEAR YOU HAVE GOOD NEWS... You deserve to finally finally find a Neuro that can help...and will listen and read you timeline...YIPEE... as we know they are so hard find..
stay in touch more often and hope the IV helps..
hugs
wobbly
undx
stay in touch more often and hope the IV helps..
hugs
wobbly
undx
I agree that Mokibear and Wobbly should come to my city and see this dr.! I am going to have to get db back on the podium and perhaps she can light a fire under some different butts other than mine for a change! he he Even if they could see db's dr. it would be wonderful! I wish we could have more say in our healthcare but it doesn't seem like anyone is really interested in listening but at least I stated my peace yesterday to the nurse and doctor and I think they got my message loud and clear! I can probably give the names of these doctors to Moki and Wobbly if they want them...just let me know and perhaps you can both get a referral to a real doctor too! Wouldn't that be great?!
Lots of Hugs,
Rena
Lots of Hugs,
Rena
I am so happy for you Rena. You have waited too long but I am glad that a nice neuro finally is taking care of you.
Now, do you think we can get moki to him somehow? And wobbly?
Enjoy the afternoon.
Elaine
Now, do you think we can get moki to him somehow? And wobbly?
Enjoy the afternoon.
Elaine
Yes...I agree about the DMD's but all in good time I figure...for now I think I have finally found a Neurologist that gives a damn about ME and not their own stats or inability to find answers (Dr. Bonehead) or their own panties and hurt feelings (Evil Neuro). I feel really good about this and nothing anyone can say will change my attitude about this appointment.
I would also like to say a HUGE THANKYOU to db my Alberta friend!!! If is wasn't for her I probably wouldn't have tried to see either her doctor, Dr. B or my new wonderful doctor Dr. G. Thankyou sooooo much db...you will always hold a special place for me in my fight to get help for this 3 year he** I have been through...forever grateful!
Lots of Hugs,
Rena
I would also like to say a HUGE THANKYOU to db my Alberta friend!!! If is wasn't for her I probably wouldn't have tried to see either her doctor, Dr. B or my new wonderful doctor Dr. G. Thankyou sooooo much db...you will always hold a special place for me in my fight to get help for this 3 year he** I have been through...forever grateful!
Lots of Hugs,
Rena
Well honey, it looks like you have finally found a neuro that's a keeper!! I can't express how happy I am for you, and I know this does take so much off your heart.
Now you can revel in the good vibes and feel better. I too hope you can talk to him about the DMDs, cause I would feel better if you could get started on one.
Hoorayyyyyyyyyyyyyyyyyyyyyyyyyy!!!!
Love & Hugs,
doni
Now you can revel in the good vibes and feel better. I too hope you can talk to him about the DMDs, cause I would feel better if you could get started on one.
Hoorayyyyyyyyyyyyyyyyyyyyyyyyyy!!!!
Love & Hugs,
doni
Wow. That sounds like a good visit to me. And I'm glad he's not pushing the "inactive" thing, although I agree with Lulu about pushing--in good time--with the DMDs.
Bio
Bio
YAYYYYYYYYYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Ok, so I'm doing a very happpy dance for you. May this wonderful doctor stay this way forever! :)
I'm so happy!!!!!!!!!!!!!!!!!
~Sunnytoday~
I'm so happy!!!!!!!!!!!!!!!!!
~Sunnytoday~
Rena,
This all sounds wonderful EXCEPT for his desire to not put you on DMD's. Copaxone has almost no side effects. The interferons might be avoided for you because of your other drug interaction problems. But some DMD of some sort should be tried... MS is always lurking and it takes months for the DMD's to kick in and start working . It only takes a split-second for a new symptom to appear and to become irreversable.
Be sure and keep at him about the DMD's.
Overall I am pleased at this news for you.
Doesn't it feel great?
Lulu
This all sounds wonderful EXCEPT for his desire to not put you on DMD's. Copaxone has almost no side effects. The interferons might be avoided for you because of your other drug interaction problems. But some DMD of some sort should be tried... MS is always lurking and it takes months for the DMD's to kick in and start working . It only takes a split-second for a new symptom to appear and to become irreversable.
Be sure and keep at him about the DMD's.
Overall I am pleased at this news for you.
Doesn't it feel great?
Lulu
Oh yeah...by the way..Dr. G. only mentioned the word "in-active" in the phrase stating that it is NOT IN-ACTIVE...this word in my vocabulary is disappearing and I think it is permanently being shoved somewhere that the sun don't shine on the EVIL NEURO..BWWWAAAAAAHAHAHAHAHAH HE HE
P.S. Sorry bout that...thank you to all of you for your lovely words of support and your concern about me not getting this out sooner. I am sorry for that but I was just in a fog last night and it took awhile to remember everything. Again...thanks for all your support and Lulu...I gave Tippy and cybersmooch for ya! hehe
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