New Neuro Dr.

Post by **ViewsAskew** » Mon Oct 19, 2009 2:23 am

I hope so Susan. I wish I was going to be there next week, too.

rlsgirl · Post by **rlsgirl** » Mon Oct 19, 2009 3:53 pm

Sleuth wrote:I saw Dr. Earley at John's Hopkins this past July. He seems very informed and is very nice. However, I am not sure about the follow up. You might ask his office before you go there.

I haven't seen the doctor here who is "treating" me for RLS since my visit with him, so can't say for sure. I am seeing her tomorrow, so will have a better idea of what communication there has been between the two of them.

Dale

Did Dr. Earley change your medication or anything or is he just going to consult with your current Dr?

How far from John's Hopkins do you live? I live in the Virginia Beach area of Virginia. I'm certainly willing to go there but I don't feel like I could wing going to CA anytime soon! I have a teen girl that is graduating this year and moving on to college with some pretty large plans for our pockets regarding her college plans! LOL First things first. Dr. Earley would be more in my reach but I would like to know some of the details of your appointment and how it may benefit me to go see him. i don't want to waste more time and money ya know?

THanks so much for what you have told me and anything else you can tell me. :-)

rlsgirl · Post by **rlsgirl** » Mon Oct 19, 2009 4:09 pm

SquirmingSusan wrote:I'm hoping that Dr. B will be able to influence my pain doctor a bit, as far as helping me with actual sleep issues. The pain clinic gives me the prescription for methadone, and also for Provigil. But they really don't know anything about sleep meds. My pain doc said he is willing to consult with Dr. B on my treatment. We'll see.

The good thing for me is that I don't need meds for sleep as long as I'm taking something that controls the RLS. I have no issues sleeping as long as my legs are under control. Subutex keeps them under control in EVERY way. I would just go out of my mind if they stopped allowing me to have it I really would.

I don't want to go back to the point of flopping from one medication to another to find something or a combo that will work properly for me. It costs alot of money and it wears my body and mind slam out! not counting all of the time I miss from work because a medication makes me sick to the point that I can't go. I remember taking neurontin for the first time. OMG I took it that morning while eating a bowl of cereal and I was woken up at 3:20pm by my husband who had come home lookiing for me because my work called him after me not showing up for work all day or calling in. LOL I took the pill and the last I looked it was 6:30 am. I was due at work at 8:00am. My phone was ringing and my cell phone and that stuff knocked me so far out I heard NOTHING!

Lucky for me I had no meetings that day and my boss was somewhat understanding since my husband mentioned to her that he was concerned because he knew I was starting a new medication that morning. Needless to say I continued to try it during the evening for the next 4 days and I just could not do it. I was in fear that I was not going to wake up one day from this stuff! I was in a coma after taking this stuff every time.

Subutex has no effects on me other than the fact that I notice that I have more energy, I don't have RLS, I sleep good but can still wake up easy when needed too, and my moods are not depressed anymore. One thing my husband happends to love is that my sex drive has gone out the roof on this stuff. I haven't had that since I was 21 and had a Hysterectomy. So not only has it been great for me its been great for my husband as well! LOL

I just feel safe on this medication. I don't feel like something is giong to happen to me and I don't feel like its going to cause me health issues later on in life. Why not allow someone to take something that works and does not make them feel different like a feeling of being high or tired?

Thank you all for your support!

Neco · Post by **Neco** » Mon Oct 19, 2009 7:37 pm

You need to take a letter with you, that says pretty much what you just said in the post above.

Write out a letter detailing what your life was like prior to taking Subutex, and what it has been like since taking it.

Sign it, get your husband to sign it, get your current prescribing doctor to sign it. And drag this thing with you to EVERY appointment you ever have until this situation is resolved.

Sleuth · Post by **Sleuth** » Mon Oct 19, 2009 8:49 pm

rlsgirl wrote:
Sleuth wrote:I saw Dr. Earley at John's Hopkins this past July. He seems very informed and is very nice. However, I am not sure about the follow up. You might ask his office before you go there.

I haven't seen the doctor here who is "treating" me for RLS since my visit with him, so can't say for sure. I am seeing her tomorrow, so will have a better idea of what communication there has been between the two of them.

Dale

Did Dr. Earley change your medication or anything or is he just going to consult with your current Dr?

How far from John's Hopkins do you live? I live in the Virginia Beach area of Virginia. I'm certainly willing to go there but I don't feel like I could wing going to CA anytime soon! I have a teen girl that is graduating this year and moving on to college with some pretty large plans for our pockets regarding her college plans! LOL First things first. Dr. Earley would be more in my reach but I would like to know some of the details of your appointment and how it may benefit me to go see him. i don't want to waste more time and money ya know?

THanks so much for what you have told me and anything else you can tell me.

This is the whole story. I needed an iron transfusion because my iron levels were rock bottom. I couldn't find anyone in NYC who would do it. My doctor met Dr. Earley at some convention and mentioned me to him. He told her to have me call him because he could arrange for me to have the transfusion. I called his office and made an appointment. I wasn't taking any medications at the time. I meet with him and he did arrange for the iron transfusion. He told me to call him 4 weeks after I got home to let him know how I felt. He wanted to know if another transfusion would be warranted at that time. It wasn't. I called him once again, but got a pretty tepid response. He made me feel as though he didn't want me calling again.

Today I saw my doctor. She told me that they had been in touch after my visit. He had recommended two medicines for me.

I get the feeling that he isn't into keeping up with patients once they go home. My doctor agreed with me. So, if you're looking for follow up care, I don't believe he's the one. At least, that has been my experience.

He is not into emailing either. I thought it was just patients, but my doctor told me he doesn't like it from her either.

Sorry,

Dale

Neco · Post by **Neco** » Mon Oct 19, 2009 10:19 pm

For some reason, the only response I could muster was "Wow, guy sounds like a dick"... But I know that is too harsh, everyone has their methods..

He recommended Methadone for you didn't he? In rlsgirl's case she is only looking for someone who can advise her doctor that he is giving her the most appropriate medicine and that he shouldn't stop.. So I would think it could work out for her.

I suppose another idea... is if Dr. B could do a phone consultation where he and your doctor discuss your case? Maybe that would work? Although it relies on both Doctors being interested in such a thing.

Sleuth · Post by **Sleuth** » Mon Oct 19, 2009 11:55 pm

Yes, that might work.

He didn't recommend Methadone for me. He recommended two other opiates. I don't remember the names. I am going to give Mirapex another try before jumping to the opiates. I never followed through with upping my dose on that medication.

I had an interesting conversation with my doctor today about RLS. She told me how hard she is working to train doctors to treat RLS, but that very few doctors show an interest in treating RLS patients.

Dale

Post by **ViewsAskew** » Tue Oct 20, 2009 6:01 am

Ouch - very few doctors show an interest in it????? I guess it's just not glamorous enough. Yeesh.

Neco · Post by **Neco** » Tue Oct 20, 2009 2:02 pm

Sad...

Wayne · Post by **Wayne** » Tue Oct 20, 2009 4:57 pm

rlsgirl wrote:The good thing for me is that I don't need meds for sleep as long as I'm taking something that controls the RLS. I have no issues sleeping as long as my legs are under control. Subutex keeps them under control in EVERY way. I would just go out of my mind if they stopped allowing me to have it I really would.

I don't want to go back to the point of flopping from one medication to another to find something or a combo that will work properly for me. It costs alot of money and it wears my body and mind slam out!

Sounds like you have found the silver bullet. Good for you.

I can certainly relate about all the different medications wearing out my body for very little return. I'm about to give up on the Neurontin because it's not offering any relief anymore (it did at first). The side effects, (especially the decreased libido) without any relief of symptoms are just a burden I can do without.

rlsgirl · Post by **rlsgirl** » Fri Oct 23, 2009 3:35 pm

Zach.....I thought about the same thing regarding Emailing Dr. B to see if he would consult over the phone without meeting me and only going on what is told to him and maybe having my medical records in hand. I have started a letter to him and hope to complete it this weekend so I can get it emailed to him.

I will let all of you know the outcome of it. Hopefully the email address is a good one. Knowing my luck I will send it and he will have a different email now! LOL :wink: