Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I have been on a 3 year struggle to find a neuro.
I live in a very rural area and we simply do not have many good doctors around here.
The MS society was no help for their list has some REALLY notorious bad doctors and doctors that refuse to see MS patients. Weird, I cannot figure it out.
When I say they are bad doctors, I mean doctors who want MS patients, because they need lots of drugs, but they don't want to mess with finding the right medication or heaven forbid the forms for an interferon.
They want to give you pain meds and send you on your way.
I do as much research on all the doctors I can. One even has had his licence revoked for a while and his ability to prescribe narcotics. He was seeing 20 patients a day. Not him and 3 PAs but him. That is one every 3 minutes. Yeah, he was just handing out scripts.
So my GP, in his attempt to help, he has been great, just not as thorough as me, set me up with the first neuro he could find who would take me.
For reasons I won't go into, i feel uneasy about this. He seems wrong to me.
Plus I read online reviews. Taking into account that some people post if they get mad a dr won't give them the drugs they want.
But this one review wrote that the dr failed to order an MRI despite showing symptoms of a disease that can lead to paralysis.
So they went to another place and was properly diagnosed, but almost too late. It was detailed and so on as to his negligence.
Now, that is not the problem. The problem is, he had 3 great, raving reviews. One was 2 months after the bad one. It said how the dr diagnosed him with this exact same rare disease, and he acted fast and ordered an MRI and so on. Seemed fishy to me. And he ended all the sentences with !. Not just an exclamation point, but a space and an !.
The other two raving reviews sounded the same. The same kind of broken english and the same ! I could be wrong, but my gut is saying the dr or someone on his staff is making these comments.
I could be so very wrong, but I have learned, listen to my gut.
So, I searched high and low and found a dr i thought might be a good fit. I called and they were so nice... but he is retiring in August. NOT what I need. After all, losing my last dr when she moved is what got me in this mess after all.
But the nice lady suggested another neuro. She said this is who he is referring his patients to when he retires. She is based out of a decent hospital.
So I called. They were so nice. But asked if I had a GP as they need a referral. No problem there. And, they can get me in within 3-4 weeks.
NOT BAD!! Around here it is usually 3-6months.
And for the kicker, she is a woman. Yes, call me sexist, but I find women doctors are a lot less likely to say, just get in shape, or this is all because you are a woman and cannot handle stress. Yes, this has been said to me before.
She has great reviews. On how she takes her time and gets all your history and listens.
She is an hour away.
I hope I am not wrong, But I have a good feeling about this one.
Fingers crossed.
BTW, saw my eye dr today and was scolded for not being on an interferon. But, when you can't find a decent doctor, what can ya do?
I live in a very rural area and we simply do not have many good doctors around here.
The MS society was no help for their list has some REALLY notorious bad doctors and doctors that refuse to see MS patients. Weird, I cannot figure it out.
When I say they are bad doctors, I mean doctors who want MS patients, because they need lots of drugs, but they don't want to mess with finding the right medication or heaven forbid the forms for an interferon.
They want to give you pain meds and send you on your way.
I do as much research on all the doctors I can. One even has had his licence revoked for a while and his ability to prescribe narcotics. He was seeing 20 patients a day. Not him and 3 PAs but him. That is one every 3 minutes. Yeah, he was just handing out scripts.
So my GP, in his attempt to help, he has been great, just not as thorough as me, set me up with the first neuro he could find who would take me.
For reasons I won't go into, i feel uneasy about this. He seems wrong to me.
Plus I read online reviews. Taking into account that some people post if they get mad a dr won't give them the drugs they want.
But this one review wrote that the dr failed to order an MRI despite showing symptoms of a disease that can lead to paralysis.
So they went to another place and was properly diagnosed, but almost too late. It was detailed and so on as to his negligence.
Now, that is not the problem. The problem is, he had 3 great, raving reviews. One was 2 months after the bad one. It said how the dr diagnosed him with this exact same rare disease, and he acted fast and ordered an MRI and so on. Seemed fishy to me. And he ended all the sentences with !. Not just an exclamation point, but a space and an !.
The other two raving reviews sounded the same. The same kind of broken english and the same ! I could be wrong, but my gut is saying the dr or someone on his staff is making these comments.
I could be so very wrong, but I have learned, listen to my gut.
So, I searched high and low and found a dr i thought might be a good fit. I called and they were so nice... but he is retiring in August. NOT what I need. After all, losing my last dr when she moved is what got me in this mess after all.
But the nice lady suggested another neuro. She said this is who he is referring his patients to when he retires. She is based out of a decent hospital.
So I called. They were so nice. But asked if I had a GP as they need a referral. No problem there. And, they can get me in within 3-4 weeks.
NOT BAD!! Around here it is usually 3-6months.
And for the kicker, she is a woman. Yes, call me sexist, but I find women doctors are a lot less likely to say, just get in shape, or this is all because you are a woman and cannot handle stress. Yes, this has been said to me before.
She has great reviews. On how she takes her time and gets all your history and listens.
She is an hour away.
I hope I am not wrong, But I have a good feeling about this one.
Fingers crossed.
BTW, saw my eye dr today and was scolded for not being on an interferon. But, when you can't find a decent doctor, what can ya do?
Take care and glad to know you may have found some help at last!
:)
Let us know how you go.
When you have MS, your medical team becomes so important. It sounds like an easy fix, and not a very practical one, but I would have to move out of the area I was in if I couldn't find decent medical assistance. We just don't realize how lucky we are.
Good luck to you tara, I hope your intuition is right on this time!
Gentle hugs, Linda
Not long before I saw him.
So..........the MS society is never been high on my list for neuro referrals. There is a lot of what I would call in-breeding. Here at least.
Melanie
Have been dealing with RRMS for almost 30yrs, never did find a neurologist that worked for me. The ones that I saw seemed both highly educated as well as arrogant . The last time that I went to see one, he said.... "I don't know what you think that I can do for you, why don't you go home & do your housework?"
Did I ever go back, no.
Over the last couple of years, much has been written about CCSVI,
& this vascular connection to MS. Narrowed veins are often found to be a factor. When tested, four of five veins were narrow.
Check out about CCSVI online, now being treated in the US & Europe via venoplasty.
This me trying to raise awareness about this.
last fall. Four of five veins found to be blocked. My husband saw the ultrasound results on a screen, looked like some veins had ended up travelling back from where they came from.
The best & least invasive treatment method is called angioplasy,
tons of info online. Angioplasty for all sites, CCSVI sites can all be checked. Go on to Utube to see before & after trestimonials. Try liberation from CCSVI to get to the right place.
Cannot get treatment desired via angiopasty, here in Ontario, yet. Many are finding ways to yravel to the US. We have a foundation started to help those who need treatment called CCSVI foundation Canada. If we can possible find a way, we will go there.
How long will Canadians have to wait? Angioplasty is done all the time for heart atatck victoms & it is covered.
I found her none to soon as I am having some serious spasm problems. She is working with me to get me straightened out.
It is great to see that you are trying to help MS patients in Canada get the treatment they deserve. A close place for Canadian patients to get treatment is in Dayton, OH. They have a clinic called Dayton Interventional Radiology that offers the treatment and has had a few Canadian patients get it. I've heard great stories about the clinic, doctor, and treatment.
http://www.daytonir.com/LiberationTreatmentCCSVI.aspx
thats the link, if you want to check it out! I wish to help in the best way possible.
Wish that medicare would fund this essential treatment.
Breast augmentation as well as sex changes are covered!
My theory is that there is just so much money in the MS drugs,
which do not do much from what I read.
Like I wrote before, we have a CCSVI foundation in Canada, they ae fundraising to get people treated. Last time I heard I was at about #84 on the list. I will continue to wait.
For patients who are able to afford the treatment, I looked into Dayton Interventional Radiology and their treatment altogether is $8000 plus a stay at the Marriot. It is reasonable, and I hope more and more fundraisers help the situation.