SEEING NEW NEURO?--TIPS THAT MAY HELP

jan3213 · Post by **jan3213** » Mon May 15, 2006 8:39 pm

Hi, it's Jan

I have my first apointment tomorrow with a new neurologist. My PCP referred me to her and I'm very excited. Both my PCP and new neuro are women. My RLS is getting to a point where I can't even sit through a movie, dinner at a restaurant, ride in a car--you all know the drill. And, I have the "mystery numbness" that we have to find out about.

I had an appointment with my PCP this past Friday morning and we discussed my visit with the neuro. My PCP told me that she was going to send a "clean" record to the new doc, since I've had conflicting opinions between the last neuro, my PCP and a rheumatologist (who dxed me with periphernal neuropathy). My PCP is not going to include any notes from my former neuro. Instead, she is going to send only her notes (they will be extensive) and all test results. She told me that she didn't want the new neuro to have preconceived opinions about me or my condition.

I've always thought that my records were "marked". Now, I know they are. I could have my records, of course. But, I know that my PCP is in my corner and this is the best way to handle the transition from old neuro to new neuro.

I also am going to tell the new neuro that I want off of Mirapex. It is no longer helping me. In fact, the side effects are getting worse. I am taking information I have printed off of this forum regarding DA's and the fact that I think I'm no longer helped by any of them. (I've tried two others in the past.) I will have to have a replacement for Mirapex and I'm going to talk to the neuro about that--calmly, armed with as much information as I can find on this forum.

Ann--if you see this post, would you please contribute any information you think would help? You are our "guru" and I appareciate you so much.

I'm hopeful that this time, I will get help. I will keep you all informed. Something I learn or go through might help one of you.

Thanks for listening.

Jan

becat · Post by **becat** » Mon May 15, 2006 9:39 pm

Jan I'm so glad you posted this!

This might be helpful to others after years of doctors and testing and the Docs opinions, clean records might be better than anything I've heard of.
My prayer and the moon are with you tomorrow. You'll do great.
I know we have that info somewhere on the getting off of Mirapex, but have to run for now. I will look later, but Ann may remember faster, so who ever get's to it first post the link about coming off of DA's....even if it's just our conversations, I think that is a wise thing to take with you.
Love ya'll.
Lynne

Penguinrocks · Post by **Penguinrocks** » Mon May 15, 2006 10:01 pm

Sounds like this is a good one my Jannie!

What a good move and sounds like a great doc! I hope this is a huge step in making your life with RLS so much easier.

I sure do love you all so much and pray that the pain will go away.....

Penguin

jan3213 · Post by **jan3213** » Mon May 15, 2006 11:23 pm

Thank you both so much! It's great to have such wonderful friends.... My hubby just told me that he can go to the appointment with me--well, he'll actually have to meet me there because he has an appointment at 11 am he can't reschedule. I hope I can get in on time so he can be in the room with me when I talk to the new doc.

My friend from here is still riding with me--I get so sleepy driving.

So, with the info I have and the info I hope to get, I'll be all set.

Love you both
Jan

Post by **ViewsAskew** » Mon May 15, 2006 11:40 pm

I sure hope it is a good meeting! Not to be the wet newspaper in the bunch. . .the first time I saw a new neuro, I was confident he'd figure it out. The second, I was concerned and it failed miserably. That's when I did a TON of research, my doctor was positive, etc. When I went in to see her, I was SURE that it would be good. And the first meeting seemed good. She listened, she was up-to-date, she understood my hell! That was a lot better than others. She wanted me to stay on the Mirapex just for a little while. By the third meeting, 4 or 5 months later, I came to realize that she wasn't going to "let" me get off of it. I really felt like I'd been lied to and I felt to hopeless.

The moral? Not sure. Maybe just to put everything in perspective. Be hopeful, but keep some reservations. Give her the benefit, but don't think she is God. Even if she is sharp, smart, knows her stuff, and seems to connect with you, she still has to follow through and do what is best for you - and staying on the Mirapex is NOT it.

Per getting off of it, I only know a bit about it. I didn't take as much as you, so I'm not sure how quickly you can reduce it. I did mine in .25 mg increments, but I only took .75 total So, maybe you can reduce it by thirds, which is what I did. I reduced it every 3 or 4 days, while increasing the med I was taking in its place. I didn't have any problems until the last .125 mg. I actually felt better with each reduction, because the side effects abated a little bit each time.

Corrie can tell you, too, but the week where you stop it is pretty horrible. In fact, Corrie did warn me but I didn't listen hard enough, lol. The RLS symptoms for some people (not sure if it is all people who take it for at least a year or more, or just some people) are like the worst RLS you can imagine. My body jerked, spasmed, my legs would buckle when I was standing from the muscle contractions. That's when I would break down after 5 days and start taking it again. If I had only known it would only last 7 or 8 days, I would have toughed it out. But, for me, the Methadone helped a lot. I tried Ultram and it wasn't strong enough. But the Methadone allowed me to get through that week.

It may be hell, Jan, but at this point I think what Nadia's doctor is doing is the best thing when a person gets to where the doses are high, several drugs are being taken, and things aren't working. The only way to find out what your RLS is really like is to stop it all. . .and not add anything for a couple fo weeks. Maybe stopping it with an opioid then stopping the opioid after 2 weeks of starting it is a good choice. I'm not sure. I just have the feeling that unless we do that, we really don't know what is really our RLS and what is medicine-induced.

Let us know how it goes! Just remember: she is educated, you need her help, but it's your body and she must listen to you and take your unique needs into account. As hard as it is to do, you have to be able to stand on equal footing with her. Oh, are you going to ask your hubby to go with? He might have an interesting perspective for her and be able to help you ask questions and stand your ground - something that we almost all struggle with when faced with the doctor.

Ann

jan3213 · Post by **jan3213** » Tue May 16, 2006 12:20 am

Hi Ann

Thank you for your response. This is the third neuro I will have gone to. I went to the same one for a long time, then the second one for about a year. I'm hopeful, Ann.... But, I'm not going to see her expecting everything to be wonderful. I have a job to do and that's to go in, armed with information (which she may or may not accept), and--as diplomatically as possible--let her know that I'm "interviewing" her and we'll go from there. I know she's not God---none of them are.

You asked if my hubby was going with me. I stated above:

My hubby just told me that he can go to the appointment with me--well, he'll actually have to meet me there because he has an appointment at 11 am he can't reschedule. I hope I can get in on time so he can be in the room with me when I talk to the new doc.

Thanks, again, for your help.

Jan

Post by **ViewsAskew** » Tue May 16, 2006 3:34 am

Well, it helps to read ALL the posts, doesn't it

. I'm glad he is going. I wish I really was a guru and had some excellent information that would help. Alas, I am no guru today

.

We'll all keep you in our thoughts tomorrow. You sound like you are ready, prepared and strong. Not much more you can be, I don't think.

becat · Post by **becat** » Tue May 16, 2006 4:01 am

Ann, I think you are our guru in so many ways.
I get the feeling that with some of what has been going on, the sun has not shined on you as it should or as you deserve.
Darlin" it's ok, you can have a good/bad/vent day too. LOL
I love you you and smile cause tomorrow someone will be thinking of you and of Jan. all posistive thoughts and the best of karma.
Hugs
Lynne

Post by **ViewsAskew** » Tue May 16, 2006 4:13 am

Thank you - both of you, but I really am OK without any extra sun

. Besides, it might cause skin cancer, so the shade is a good place to be.

cornelia · Post by **cornelia** » Tue May 16, 2006 7:59 am

Jan, good luck!

I don't suppose that ANYONE can get off a DA without help from a narcotic. It is horrible and anyone who can make it without help deserves a medal, just my opinion.

Corrie

jan3213 · Post by **jan3213** » Tue May 16, 2006 8:28 am

I just got up (3 am)--my usual (lol)--and saw your posts, Ann, Lynne and Corrie. Thank you--all of you--for being here for me. Ann, you are a guru--I've forgotten more than you remember, for Pete's sake. And, Corrie---I don't think there's any way I could go off of Mirapex and not have a "replacement".... Yikes! I think I'd lose what mind I have left. LOL

I'm not going alone, tomorrow morning. I'm going to have a van full of friends with me---Penguin, Lynne, Ann and Corrie. We'll see how it goes and I'll report back ASAP. Of course, I know from my last experience, that I might think it went well and then find out differentl. I sure hope that's not the case this time.

I hope you're all sleeping (well, it's daytime for you, Corrie, isn't it?). Thanks again.

Love
Jan

P.S. Keep dry, Penguin......

cornelia · Post by **cornelia** » Tue May 16, 2006 9:29 am

Yes, it is 1130 am here and I am already exhausted (LOL), but I am going to take my Tramadol drops and than I will do some household chores.

Happy dreams, Jan

Corrie

jan3213 · Post by **jan3213** » Tue May 16, 2006 10:05 pm

It's Jan reporting on my neuro visit.

Re RLS: She wants me to taper off the Mirapex by .25 mg. every three nights and then when I'm completely off, see what happens. I can call her if it's horrible. My hubby told her he was afraid it would be horrible. So, I may be in for a fun time.

She gave me a really good neurological exam, the best I've had. Asked tons of questions, as did the nurse who saw me. I'm going to have another nerve conduction test on June 6 (my next appointment). She said I do have PN, even though my previous neuro said I didn't. She could tell that by some things she did during the exam. She acknowledged that I have fibro---In fact, she saw that on my charts and asked how long I've had it. Didn't say it was a "wastebasket" term, like other docs I've been to. Told me I must be in a great deal of pain, but we'll address that after she sees what I do w/o the Mirapex.

Now, on to the real reason I went to her. The numbness.... she's concerned about that and told me that my left side if considerably weaker than my right side. She said she was going to go over my records during the next 3 weeks before my appointment in June. She said Cheryl sent very good records---better than most doctors. I saw some of Cheryl's notes, etc. I was pleased. I asked her what the weakness on my left side meant and she said it could be lesions on my brain or something vascular---it's hard to say right now. She saw that I had an MRI of my brain, but said small lesions can hide betwen the layers of the brain and since they weren't looking for them in that MRI, I could have some. So, probably another MRI is in the future.

I hate to be too optimistic---I'm cautious. However, she was not gushy like my previous neuro, but very business-like, willing to answer any questions we had, very thorough and seems like she wants to get to the bottom of whatever she needs to.

So, there you go. She was receptive to some comments I made--I had notes with me. We'll see. I don't expect instant answers. But, at least she's looking into the situation and even noticed some things no one else has.

Thanks to all.

Love
Jan

Post by **ViewsAskew** » Tue May 16, 2006 10:16 pm

Sounds like it went very well. She sounds like she's in your court - willing to work with you. Are you relieved a little? I think I would be. Even if you don't have answers yet, she's looking for them. As always, keep us apprised of upcoming tests. I hope that it's not a big deal, whatever it is, but mostly I hope you find out what it is and soon. You can't treat something if you don't know what it is.

I'm glad you're getting off the Mirapex. I hope she will be open to phone calls as you get lower and if you get into a tough place. While getting off of it may ultimately really improve things, there could be tough times. It must have felt good to have your husband stand up for you with her.

jan3213 · Post by **jan3213** » Tue May 16, 2006 10:26 pm

Yes, I feel relieved...she does seem to be in my corner. And, I was glad my husband was with me.

Ann, thank you for your help. Thank all of you. I took everything all of you said into consideration today. And, I'm glad I did.

Ann, you are a guru, whether you want to believe it or not.

Love to you
Jan