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Old 03-18-2009, 02:18 PM   #31
Dixie Luvr 98
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And I thought my neuro was arrogant! I can so relate to your complaint about not even being able to answer questions. I remember being cut off with a dismissive wave of the hand.
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Old 03-18-2009, 10:22 PM   #32
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Mommasita, first, my thoughts and prayers are with you. I hope you do seek out a new doctor - I've never heard of one who wouldn't inform a patient of their own test results and I worked for a surgeon for many years. Sounds a little like "I know what's best for you so you don't need to know anything" and that frightens me. It also flaunts the laws of informed consent for the patient. How can you accept any treatments, test or meds, he prescribes for you if you don't know what they're for, what they're supposed to do and whether or not you really need them. And a reputable doctor would encourage you to ask questions, even seek a second opinion if it would make you feel more confident in his/her care. Please get a referral from a physician you trust to another neurologist.

And congrats on becoming an auntie. I'm going to be a first time grandma around Sept. 1!

I'll keep you on my prayer list and in my thoughts - please keep us posted!
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Old 03-19-2009, 07:29 PM   #33
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Sher, I am so sorry that you're going through this and not getting a definitive diagnosis.

It sounds like your skepticism is well placed. I'm glad that you're going to see your regular physician before following any treatment recommended by this arrogant jerk.

Keep us posted!! I'll be thinking of you.
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Old 03-24-2009, 11:59 AM   #34
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Originally Posted by mommasita View Post
Well here goes.

I am thoroughly confused after this appt. This new Dr. (neurologist) I did not like one iota. Did not feel comfortable nor was I able to even speak. Every question he asked, I could not finish answering. Grrr I don't like that.

He told me he has results but would not "share" them with me. He does not want to "label" me with MS or any other auto immune disorder (as I have Sjogren's) right now. I ask well what are the results, and he said I am not sharing them, final. He said let me say "hypothetically" they say probable MS, it is never a definite even after finding lesions. That MRI's show every dot of anything in your brain, but what confusing to me now is that I had a SCAN and EMG's, not even a full MRI yet, so what is on this paper Is this hypothetical, what kind of game is this. He told me I was too nervous, and I told him he was intimidating to me! He LOL at that, like really. Of course I am nervous, how could I not be.

He asked if ever had headaches, I told him maybe 5 to 10 a year, and he diagnosed me as having migraines??? Gave me a prescription for migraines as well, but after some research I also see it is used in MS tremors, and hypertension (which I have the opposite of). I told him they were not at that debilitating at all, and I have much bigger issues. I did not fill the prescription just yet. I want to call my GP tomorrow and try to get in with him ASAP.

He also said that if he does diagnose me with MS, I may lose my work insurance, disability, and all that. That just blew me away, I had no idea. And now I am supposed to update my insurance, and am afraid to disclose this possibility, in case that does happen. I need to speak to my Dr. first.

Sorry for the novel here, but I was completely and utterly confused all night.

I know it is very frustrating. I am too probable MS. If you check out many MS boards you will find half the people in MS limbo.

I am Canadian so I do not need to worry about health care. But What I have learned is that neurologists do not Diagnois you right away on purpose. Especially in the USA.

This is so you can get any needed medical insurance. Or long term disability insurance.

Once MS is even listed as possible from the neurologist you can not get anything.

It sounds like he is walking a fine line. Basically telling you to get all your ducks in a line. Since migraines can leave lesions he can put that on the medical record for your medical insurer so not ro raise any red flags.

Especially when he emphasized hypothectically. If he did not think you had MS he would not have said hypthectically. He is trying to proctect you and himself I think.

Though he is not the best at manners. I think he is looking at the big picture.

If you do have MS the drugs are extremely expensive. Ranging around $17,000 to $20,000 a year.

Yes you read it right. Though a lot of the companies who make the drugs can help by lowering it if you do not have good enough cover.

If you would like to talk to me. Just PM hope I can be of some help.

Many many people have awful symptons of MS but are still not offically diagnois. I am one. I have been on this rollercoaster ride for 3 years now. But I do go to an excellent MS clinic. Which treats my symptons. Some lesions are so small that it is not till you die that they know for sure that it is MS.

I have had many many tests to make sure it is nothing else. This is normal for more than 50% of the people. It is not always easy to diagnois MS since their are many disease that mimic it.

Hope this helps.
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Old 03-24-2009, 02:31 PM   #35
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Thank you to all.

Belle, I am also Canadian . Are you saying the cost of the drugs is that cost to us here in Canada

A lot of what you post does make great sense to me, especially now that I have had some time to digest, and go over what he said like 100000 times . I see my primary Dr on Friday, so kind of looking forward to that. He does not beat around the bush, he is straightforward.

My only issue with all this is my insurance. I need to know what leg I have to stand on with that. Do I disclose it all. Do I not. I have to place a call to them Friday after my appt, so I have lots to talk to the Dr about.

Thank you for your insight.
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Old 03-24-2009, 03:24 PM   #36
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Quote:
Originally Posted by mommasita View Post
Thank you to all.

Belle, I am also Canadian . Are you saying the cost of the drugs is that cost to us here in Canada

A lot of what you post does make great sense to me, especially now that I have had some time to digest, and go over what he said like 100000 times . I see my primary Dr on Friday, so kind of looking forward to that. He does not beat around the bush, he is straightforward.

My only issue with all this is my insurance. I need to know what leg I have to stand on with that. Do I disclose it all. Do I not. I have to place a call to them Friday after my appt, so I have lots to talk to the Dr about.

Thank you for your insight.
I am not Canadian so I don't know how your insurance works but since you don't have a definative diagnosis and are seeing your primary care physician this week for another opinion, it seems to me that you can wait a few days to decide what to do about the insurance. I think that you can honestly say that you don't even know what is wrong much less whether anything is going on that needs to be disclosed to the insurance company. Let your doctor help you decide on that issue, too.

Sending good thoughts and pixie dust your way!
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Old 03-24-2009, 09:10 PM   #37
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Quote:
Originally Posted by mommasita View Post
Thank you to all.

Belle, I am also Canadian . Are you saying the cost of the drugs is that cost to us here in Canada

A lot of what you post does make great sense to me, especially now that I have had some time to digest, and go over what he said like 100000 times . I see my primary Dr on Friday, so kind of looking forward to that. He does not beat around the bush, he is straightforward.

My only issue with all this is my insurance. I need to know what leg I have to stand on with that. Do I disclose it all. Do I not. I have to place a call to them Friday after my appt, so I have lots to talk to the Dr about.

Thank you for your insight.
Yes the cost is even higher in Canada. I go to St. Mike's you will wait along time to get in. But your doctor can refer you to a MS Clinc. If you are not near Toronto. Most insurance companies will not even fund it unless you have no ifs and buts that you have MS.

Also I was too late to get long term diabilty insurance. The one you get that covers different disease such as heart attack and MS is usually included.

I am not sure how your insurance works. But mine is covered by work. So I never had to disclose anything.

Also since you have only been diagnois with migraines. That may be a big plus.

Also the neuro is obligated to send a report to your Family doctor. Make sure your physian gets this and check to see if MS in mention at all.

I am not sure if you have a follow up appointment with the neuro. If so I do not think it is for migraines.

Also please read the the many posts on how diagnois is made with MS. Some people only have one attack. And never again. Other have many but the lesions are slow to show. Sometimes it takes years if ever. 5% show no lesions but have all the clinical sign of MS.

Also until they are absolutely sure you have MS they do not want to start any therapy drugs. They have proven it can slow down the effects of MS. But not all benefit. They also make you feel ill alot. Though some get used to it.

You have to take needles either once a week or every other day. Many many have flu like symptons for a day or too.

I have my symptons treated only right now.

Hope this help.

I know how awful this roller coaster is. MS effects everyone differently. Some are extremely effected other have few few issues.

After going on for awhile I have gotten used to it. I do not worry about the what ifs. I am thankful for what I have today.

Hugs.
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Old 03-25-2009, 08:26 AM   #38
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I'll be thinking about you on Friday. We'll be starting our trip that day, so I'll check back here as soon as we get back. Hopefully for some good news.

Make sure you write down everything you want to ask the doc. I always forget once I get there.
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Old 03-25-2009, 01:30 PM   #39
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I'll be thinking about you on Friday. We'll be starting our trip that day, so I'll check back here as soon as we get back. Hopefully for some good news.

Make sure you write down everything you want to ask the doc. I always forget once I get there.
Thanks..

Have a great trip
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Old 03-25-2009, 01:43 PM   #40
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Hey Momma, you are on my mind today. Please update me if you can. I miss our chats... (Sorry I couln't remember your appt date).
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Old 03-25-2009, 03:17 PM   #41
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There how are you doing?

I see the Dr. Friday morning. I will be sure to let everyone know.
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Old 03-25-2009, 04:48 PM   #42
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I just want to scream reading this... and say what?????

I do not get it, I thought the US was bad, but this sounds ridiculous.. I am sorry.. Please let us know how you do on Friday.. I am beyond words here.
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Old 03-25-2009, 09:45 PM   #43
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I hope you get some answers at this next appointment.

Take care and know that you have all of us thinking of you and wishing you all the best.
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Old 03-27-2009, 10:01 PM   #44
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So today was the day.

My Dr. was wonderful. I gave him my thoughts of the neuro, and he was not surprised at all. He has had similar reports, and before I at him, he was quick to let me know, that if he had sent me to another neuro, the wait would have been VERY long, and he did not want to wait. He needed an expert opinion is all, so all is forgiven.

Long story short. They results are probable MS with lesions found on the cat scan, and he has requested an emergency MRI, which is expected to happen within the next couple of weeks. He is concerned about the weight loss, and if it turns out NOT to be MS, then we need to find out what it is. My thyroid has been tested a lot (as I go every 2 weeks for a full blood work, with the pernicious anemia) and is good.

Then we talked about work, and he just looked at me , and told me that I was not going back anytime soon, that I am "very sick". I will see in 5 weeks time, and hopefully have the MRI results back then, and we will see from there. I am now on some painkillers for my leg pains, spasms, tremors. Supposed to help all of it, and I hope so. The only thing I have lost here is my independence, as I can not drive . I know it is small potatoes, but having a DH who is working a lot, makes me the sole transporter for my children. It will all work out though.

Also, that my insurance at work is not to be affected. They can not cancel my insurance while I am sick. This is not a private insurance, and I had no PRE existing conditions when I started it. So thank goodness for that.
So thank you to EVERYBODY for their warm words, and much more.
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Old 03-28-2009, 09:33 PM   #45
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Quote:
Originally Posted by mommasita View Post
So today was the day.

My Dr. was wonderful. I gave him my thoughts of the neuro, and he was not surprised at all. He has had similar reports, and before I at him, he was quick to let me know, that if he had sent me to another neuro, the wait would have been VERY long, and he did not want to wait. He needed an expert opinion is all, so all is forgiven.

Long story short. They results are probable MS with lesions found on the cat scan, and he has requested an emergency MRI, which is expected to happen within the next couple of weeks. He is concerned about the weight loss, and if it turns out NOT to be MS, then we need to find out what it is. My thyroid has been tested a lot (as I go every 2 weeks for a full blood work, with the pernicious anemia) and is good.

Then we talked about work, and he just looked at me , and told me that I was not going back anytime soon, that I am "very sick". I will see in 5 weeks time, and hopefully have the MRI results back then, and we will see from there. I am now on some painkillers for my leg pains, spasms, tremors. Supposed to help all of it, and I hope so. The only thing I have lost here is my independence, as I can not drive . I know it is small potatoes, but having a DH who is working a lot, makes me the sole transporter for my children. It will all work out though.

Also, that my insurance at work is not to be affected. They can not cancel my insurance while I am sick. This is not a private insurance, and I had no PRE existing conditions when I started it. So thank goodness for that.
So thank you to EVERYBODY for their warm words, and much more.
Oh, I am sorry to hear of the probable diagnosis. But, I know there is much they can do to help, too. Hang in there. Perhaps you will improve enough to go back to driving and maybe even back to work eventually. I will say a prayer for you and your health to improve..hugs.
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