Beautiful Maria, I admire your 'fight' so much. You are doing all the right things and I know you're creative enough to think up new avenues to pursue. Awareness about these relatively new drugs and procedures will increase. And so will your strength. Hopefully they will both reach the 'tipping point' at the same time and things will happen to keep you strong and healthy. Manda.
Ignorance takes a powerful toll! My doc knew about this (it had just been released when I was in the States), and it was being prescribed in Tulsa, OK when it first came out (I think Feb or something). What a bummer for you. Almost worth driving to another town for a better doc if you are close enough.
I just saw your rants for the 1st time. I agree totally with everything you said. I'm older than u r and have had MS a LOT longer. I've lived in Italy (Zamboni's country) for ages and tried for months to at least get tested.... I went to MANY well-known neuros in Asti my town, Turin, and Milan. Yes, they think we're stupid and they even make appts. to give you tests that they, then, don't give you. So I went to Simka in Poland. I honestly think MS progression may be blocked at least for now.
It is frustrating how complacent these Dr's can be about it when it really doesn't affect them on a personal level. Maybe if it was someone in their family, it would be different. There's going to come a day when they won't be able to ignore it anymore.
Hey Maria, Oh yes I share your frustration all the way! am sure my town is smaller we only have 2 neuros 1 till just a few years ago and NO ONE likes her she does not want MS patients! am seeing a new one and all they do are MS pateints and they are a bit better I guess? as for studies nothing is happening here on the west coast that I know of just yet? am only 3 hours from San Fransico. Rant all you want its fuel to keep fighting and perks me up ! :) love and hugs susan
I have an idea for CCSVI testing that will prove it........50 neuros get both jugulars tied off and 50 receive a sham procedure. This way EVERYONE is involved, neuros AND IR's. I'll wage that they reach a decision in 1 or 2 months. And I want to volunteer my neuro plus the one I fired last year. I had the CCSVI procedure 2 mnths ago and it DID stop my progression. I'm not completely better, but it feels like 50%.
Maria, I feel your frustrations. I live in a big city and big hospital with lots of doctors. Maybe you need to travel to a big city hospital. I hate to say be patient too because I get how you feel. Please try to think of how you deliver your concerns. That may be of help when communicating. Hope things work out for you. It's good to vent to those who understand. Christine
I think a dr.'s biggest fear is an informed patient. You have every right to be upset. I think it's so difficult for people who don't have MS to "get it". Dr. or not. I would be upset too. I hope you have better luck with the dr you got a referral to. What is it with drs who have this -"well at least youre alive-you should be happy with that" attitude?
Maria, You have me very pissed at some people I do not know in Flyspeck, Missouri! I have to say, we are getting nowhere with neurologists. Keep looking for vascular doctors in KC or St. Louis who may be open to doing a venogram and the RIGHT doppler to find the strictures. Your MS indicates you have an easily detectable problem as I am convinced 100% of us have this. Go vascular. I would also go to a neuro in the nearest medium to large city. Good luck. God bless. Some doctors are turds.
Dear Maria, I think that the problem is in the doctors and not in the town where you live. I understand your frustration and I understand why you are mad. You feel alone, battling all by yourself without the support of your doctors...doctors that should be helping you instead of brushing you off. I am sorry that you feel this way and that you have to put up with this stuff! I understand your rant and your anger and I think that you shouldn't have to feel this way!
Oh yah, i would not pay for the doppler. If you can stop payment I would. Especially if you asked for them to try to do the real doppler. They took your money. I would demand my money back if you educated them or asked. Its your money.Check your mail, call me up :) please. You do not need a neuro. stop with the neuro.
It's got nothing to do with the size of your city... it's more the size of your doctor's ignorance. So sorry Maria. Well you got something to shut you up... let's hope this Michael doctor man can DO something. Good question about what happens after 2 years on T, especially when you are so young! I ask the same. Reaching through cyberspace to give you a hug, Kerri x
Beautiful Maria, I admire your 'fight' so much. You are doing all the right things and I know you're creative enough to think up new avenues to pursue. Awareness about these relatively new drugs and procedures will increase. And so will your strength. Hopefully they will both reach the 'tipping point' at the same time and things will happen to keep you strong and healthy. Manda.
Ignorance takes a powerful toll!
My doc knew about this (it had just been released when I was in the States), and it was being prescribed in Tulsa, OK when it first came out (I think Feb or something). What a bummer for you. Almost worth driving to another town for a better doc if you are close enough.
I just saw your rants for the 1st time. I agree totally with everything you said. I'm older than u r and have had MS a LOT longer. I've lived in Italy (Zamboni's country) for ages and tried for months to at least get tested.... I went to MANY well-known neuros in Asti my town, Turin, and Milan. Yes, they think we're stupid and they even make appts. to give you tests that they, then, don't give you. So I went to Simka in Poland. I honestly think MS progression may be blocked at least for now.
It is frustrating how complacent these Dr's can be about it when it really doesn't affect them on a personal level. Maybe if it was someone in their family, it would be different. There's going to come a day when they won't be able to ignore it anymore.
Hey Maria, Oh yes I share your frustration all the way! am sure my town is smaller we only have 2 neuros 1 till just a few years ago and NO ONE likes her she does not want MS patients! am seeing a new one and all they do are MS pateints and they are a bit better I guess? as for studies nothing is happening here on the west coast that I know of just yet? am only 3 hours from San Fransico. Rant all you want its fuel to keep fighting and perks me up ! :)
love and hugs susan
4 MS patients is a LOT for a small town. That dr. sucks BAD!
I have an idea for CCSVI testing that will prove it........50 neuros get both jugulars tied off and 50 receive a sham procedure. This way EVERYONE is involved, neuros AND IR's. I'll wage that they reach a decision in 1 or 2 months. And I want to volunteer my neuro plus the one I fired last year. I had the CCSVI procedure 2 mnths ago and it DID stop my progression. I'm not completely better, but it feels like 50%.
Maria, I feel your frustrations. I live in a big city and big hospital with lots of doctors. Maybe you need to travel to a big city hospital. I hate to say be patient too because I get how you feel. Please try to think of how you deliver your concerns. That may be of help when communicating. Hope things work out for you. It's good to vent to those who understand.
Christine
I think a dr.'s biggest fear is an informed patient. You have every right to be upset. I think it's so difficult for people who don't have MS to "get it". Dr. or not. I would be upset too. I hope you have better luck with the dr you got a referral to. What is it with drs who have this -"well at least youre alive-you should be happy with that" attitude?
Maria,
You have me very pissed at some people I do not know in Flyspeck, Missouri!
I have to say, we are getting nowhere with neurologists.
Keep looking for vascular doctors in KC or St. Louis who may be open to doing a venogram and the RIGHT doppler to find the strictures.
Your MS indicates you have an easily detectable problem as I am convinced 100% of us have this.
Go vascular. I would also go to a neuro in the nearest medium to large city.
Good luck. God bless. Some doctors are turds.
Dear Maria,
I think that the problem is in the doctors and not in the town where you live. I understand your frustration and I understand why you are mad. You feel alone, battling all by yourself without the support of your doctors...doctors that should be helping you instead of brushing you off. I am sorry that you feel this way and that you have to put up with this stuff! I understand your rant and your anger and I think that you shouldn't have to feel this way!
Oh yah, i would not pay for the doppler. If you can stop payment I would. Especially if you asked for them to try to do the real doppler. They took your money. I would demand my money back if you educated them or asked. Its your money.Check your mail, call me up :) please. You do not need a neuro. stop with the neuro.
It's got nothing to do with the size of your city... it's more the size of your doctor's ignorance. So sorry Maria. Well you got something to shut you up... let's hope this Michael doctor man can DO something. Good question about what happens after 2 years on T, especially when you are so young! I ask the same. Reaching through cyberspace to give you a hug, Kerri x
I assume you understand now.....GP's and Neurologists are not going to be able to do shit for you.
Check you in box, it would let me reply before