Feeling a little uneasy. (long, sorry) UPDATE POST 44

[TruBlu]

Hey Mommasita,
First of all...
Second...that doc sounds like he needs some lessons in bedside manner!

But, I guess it is kind-of good news. It sounds like your case must not be severe????? I hope.

As far as insurance goes.... if you haven't been diagnosed, then you don't have to tell them anything. I would not list it until I had to.

I know you must be feeling very frustrated and scared. Please try to take it one day - or even one minute, at a time. During these times when I feel like I am being pulled under, I just tell myself "this, too shall pass".

You and your family are in my prayers.

 

[kimis]

mommasita RUN don't walk to a new dr! Your records are yours. Go back and get them and RUN to a new dr!
Don't disclose anything to your insurance yet as you have not been given a diagnoses. I don't even know if what he told you about insurance companies is true.
You really need a different dr that will go over your tests with you. Good luck. keep us posted

 

[KPeveler]

A dr is NEVER allowed to withhold results from you. LEGALLY he MUST give them to you. Get your records, all of them, and go to another drs immediately. If he won't give them to you, call the state attorney general.

 

[Tinker'n'Fun]

Hey Momma, did you wait at the front door until they opened today?? Just wondering if you have an update. You are in my thoughts. Diane.

 

[megthewonderful]

You and your family are in my thoughts and prayers.

Not to add to your worries, but I'd be focusing on finding a new doctor pronto! Doctors should never withhold any of your medical information from you. It is always best to get a second and third opinion anyway. I would get a copy of my records (I would not so nicely demand them today!) and talk with your primary doctor and friends/ family for recommendations on another doctor. The bottom line is you deserve the best care out there, not some doctor who won't tell you the results and hand you a prescription for migraines and send you on your way.

Keep up posted!

 

[mommasita]

I went this morning after dropping of my daughter at her bus stop.
My Dr. is away until the week I see him. I did speak to his secretary, and she is supposed to get in touch with me.

Thanks everyone.

 

[frdeb1999]

I am with the rest that say go find a new Dr.. We had to do this with my DH and it was the best thing we ever did. Hopefully you'll get some answers soon.

 

[Mskanga]

You need another doctor .....like YESTERDAY !!! Forget about the first one , he would not float my boat either.
Major hugs.

 

[Pea-n-Me]

I'm sorry it didn't go well. He sounds like a POW (piece of work).

You do have a right to your health information, but it really has to be interpreted correctly for you. Reading some things on your own can be really scary but may not be as much so if given to you correctly by the right physician. If this guy got your records, so can the next guy, and so can you if you want them. Personally, I think I'd make another appt with someone else and see how it goes then.

I have access to some of my own testing in my own hospital and I can tell you that at times I've read my own results before speaking with my doctors I've been freaking out. I don't read them anymore, I just wait until I hear from someone. Information by itself isn't enough, you need a specialist in the field to interpret it, IMO. Good luck with the next one.

 

[TruBlu]

Hi, friend. Just thinking about you and sending you another

 

[Dixie Luvr 98]

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.

 

[Elfstar]

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!

 

[Regina]

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.

 

[Belle1997]

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.

 

[mommasita]

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.

 

[lisah0711]

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!

 

[Belle1997]

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.

 

[TruBlu]

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.

 

[mommasita]

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

 

[Tinker'n'Fun]

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).