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You won't believe what my doc told me today...


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Well, I made it today with the visionj issues - it is not getting any better, it actually seems worse. I am afraid that I am going to have to stop driving so as to not put myself or anyone else in danger. Anyway...My Dr. took me off the Requip for last nights dose and today it didn't make any difference. So I was able to talk with my doc today...it was a tough talk to have...

He said that he talked with a Neurologist at another clinic (one who is doing research on POTS) to get his feedback. I have seeen this doc before - last March when they were testing me for Addison's he came in and gave me a occipital nerve block (for a severe nerve pain issue)...I din't particulary care for him then either, but this seals my opinion on him...

My doc asked what there was to do for a patient (he didn't tell him who I was, otherwise this doc would know what to say) that had dizziness issues, visions problems, eating issues, chest pain/pressure, fatigue, etc. - This neurologist told him that he was dealing with someone with a severe autonomic dysfunction. MY doc said, that was what I thought, what would you suggest as a treatment plan? Would you put them on Prednisone, Lamictal, Mifodrine, etc....basically rattled off a number of medications that I am on...This doc said "No way...I would never put them on any of that." My doc asked what he would do for that type of patient then...his answer: "I would try to teach them how to live with it, how to function with the issues, some counseling...and have them come back in 3 months and see how they are dealing with it" !!!!!!!!! Can you believe this? Although I shouldn't be too suprised, that is kinda the answer I got from the neurologist at Mayo (and why I haven't gone back to him since the recheck after I was diagnosed)...

My doc couldn't believe it - this doc wouldn't try anything to make it better! I know that there is no cure, but come on, try something to help the patient!

So....Here is the hard part of the conversation...we talked about the visions issues...my doc said that there is NOTHING he can so for that...an eye appt wouldn't do anything. He said that if they look into my eyes, things are going to look normal...they wouldn be able to test for the autonomic function of the eye properly - and then there isn't anything they would be able to do. That answers *****...Then we talked about all the problems as a whole. On MOnday he put me on Requip, he thought yesterday that it may be making the vision issues worse, so yesterday I din't take my dose - it didn't make today. So, we are going to up the dose and see if a larger dose may help. He is hoping that it will help with the vision, with the eating, with the dizzies. But he said that he honestly doesn't know what to do anymore. I was so close to tears, you could hear it in my voice, but I was able to hold it back...I told him that if this is the way that I have to live, especially with this vision issue, I won't make it very long. He said that we are back to the autoimmune suppressant medication try. For some reason my body is just making things more worse each day. I can't imagine what it is going to be like at the end of this year at this rate. He said that he wouldn't be looking at puting me on a deadl dose...but one that is going to have some repercussions to it. He thinks that knocking the autoimmune process down that it may settle all the symptoms down. I told him that I can't do this anymore...I am willing to try ANYTHING at this point. I am 32...I have to try to find SOMETHING that can allow me to live...I know that it will never be NORMAL, but at least liveable.

So, we are giving the upped dose of Requip until Monday...if things have not changed, then FOR SURE we are going to try the autoimmune suppressants. My doc looked so defeated today. I felt it. Today the real realization of it never getting any better set in. I have to say that I am lucky I have a counseling appt tomorrow because I've had it. My husband and my 2 little boys are what gets me by...without them...I can't imagine.

We found out yesterday that my husband is getting a promotion at work - with it comes a pay raise, we have yet to know how much...but this may allow me to apply for disability and not put our family in finanical distress. And with what he said today, it makes it more evident that I should start applying now. Maybe I can at least only work 1/2 time. If this gets worse, there is no way I am going to be able to work. It's hard to admit that...This is just NOT FAIR! I know that I am not dying and others have a lot more sucky life...I am just having a pity me moment...I'll stop now. ARGGHHH....I am just do frustrated.

Thanks for listening...let's hope that one of these things work...or at least provide a little relief.


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Guest tearose

I am so sorry for you Lisa.

I wish there were easy answers.

It just goes to show how many practicing neurologists just don't know what to do with us!

It is so frustrating because we all want to live better, more lively lives!

You are not alone.

Have you and your internist/pcp looked at all treatment options already?

Can you explore anything new with him?

I hope the eye issues don't get any worse. It would be hard to loose the independence of driving.

Be persistent, I think you will find something that helps you.

You are fortunate to have such a caring and dedicated internist.

best wishes, tearose

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I am sorry Lisa...

That is the answer I am getting too. I used to just get told I was making it up, but I am not a kid anymore...so they try more sneaky ways of saying it perhaps... Then they say I can take this or that and this or that just magnifies my symptoms even more...

I wish every doc who gave that answer could live in our shoes for a while and experience a Loss of consciousness in addition to all the other stuff. My guess is they would not be so complacent.

Your doc sounds nice... He sounds like he wants to help you....but the science just isnt there.

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