First Doc apt 2morow

[KJOYCE0003]

I have my first Doctor's apt tomorrow and I am so nervous. I have had RLS for many years undiagnosed and I am so worried that he may think I'm crazy. I have done a lot of research and the more I do the more I worry that he may just not understand my pain. I have tried every at home remedy you can imagine including some physic K which is for you sub conscious. NOTHING HELPS!!!!! I just don't want him to tell me I'm nervous. HELP!!!!!

[rthom]

Are you bringing in the information about it when you go? Have you seen the dr about anything else before? I assume not, wow that is a stressful one.

[KJOYCE0003]

I have taken notes. I really want to bring in some print outs but I want to feel him out first. No one likes a "know it all." I know a Doctor would not appreciate me thinking I have the answer before I even get his input. I just feel so lost. I am only 29 and I think I am a well rounded person and to even go ask for help, I would be letting my family down. I told my mom I may need to go and she told me that I need to try to overcome the issue and that no meds could help, but I have tried everything. I just want to be able to articulate how I really feel without him shutting down and not getting help. I started working for a major bank as a personal banker in August of last year and the job is just sitting all day. I love the job but the urge it causes in my legs is unbearable. I feel like I have just failed because I cant just overcome this on my own BUT I CAN"T!!! I just feel overwhelmed.

[KJOYCE0003]

I have learned so much from the information others have posted about the very intimate parts of their life's. I am having so many internal issues with my first appointment tomorrow. I was told as a child that my pain was from growing pains because I was tall like my Dad. I also know that my 84 yr old grandmother told me that she has had this her entire life and she never went to a doctor so I should be able to deal with it on my own. I CAN'T!!! I have tried. I wish I could because that would make it so much easier. Why would any person on this earth go to such extremes and deal with such push back if their is not truly an issue. I just need best practice tips for my first apt. I would ask family but they just don't understand.

[rthom]

I think you are absolutely right about both the notes and not taking print-outs if it's your first intro to the Dr. Nothing like making them feel you think they know nothing right off the bat--um, not good. Just my opinion though.

[rthom]

I'm sure you are right about the meds. nd probably about your family too, they can't understand. Not only because it varies in intensity but because our lifestyles can affect it so much. Maybe for instance, you grandma did a job or whatever daily that allowed her to mve around, she would nt have it bother her near as much as you. I'm glad you can be hear to hear the othr side of it--the one that seems more farmilliar. Just take what seems to apply to you most and do the best you can.

[rthom]

What best practice tips are you thinking of? Maybe list for yourself all the things you have tried and bring it to the appointment, when you are talking to the dr let them know what you've tried and it might help them understand how erious you take it, then they might be more likely to not ask if you could cut back on coffee etc...

[KJOYCE0003]

Thank you so much for your input because I need all the help I can get. I will make sure to tell him what I have done and hope he is educated enough to understand that with that I am really having an issue. I think tonight is going to be a restless night because I am so conflicted about what to say. My entire life I was told to keep my feelings in and I should be strong enough to deal with it on my own. I have to just go into this with an open mind and trust and hope that he gets it. I will keep you updated as to what happens and of course ask question after he gives his input.

[rthom]

You sure sound like you've got a good well thought out approach. Trust your judgement and hopefully he'll see what we see here. I'm likely going to be around--so If you are restless, I am always up for a chat.

[rthom]

Do you know which meds are for what? Or what you would be looking to try? Oh yah, don't forget the ferritin test--very crucial before starting any Da's. Do you know about that stuff?

[ViewsAskew]

Let's hope for the best.

First, what is your goal for the appointment? To be heard and understood? To get the best pharmaceutical way of dealing with it? To get a referral to a specialist? Something else? Whatever it is (or they are) , keep it in mind throughout the visit. If it's not being me, politely stop the visit and let the doctor know that you need something different from him or her.

Many doctors believe in the disease these days. That your grandmother has it is very helpful to your cause - it is hereditary! The glitch often comes when they aren't up to date on things like serum ferritin tests or what happens when the primary types of medications don't work.

Let's assume the doctor understands what it is and can correctly diagnose you. The next step is to make sure you get a serum ferritin test. If he/she doesn't mention it, what can you do? You might want to take just one handout with you - this one: http://www.rls.org/Document.Doc?id=2112

If he doesn't ask for the test, you can nicely reference is by saying something like, "Because this runs in my family and I've had it a long time, I went to the RLS Foundation for more information. I noticed that they suggest that everyone have this serum ferritin blood test. What do you think?" If the doctor says it's not important, now it gets tough. You either decide it's time for a new doctor or take a deep breath and see if a bit of a push can get you what you need. "I hear that you don't feel this will help my diagnosis or treatment (repeat what was said about why not). It's very important to me because of the strong link between iron and the disease. Would you be willing to do this for me? " or something like that.

If he does it, you're good! If not, you can dig in, but it may not work.

If you want medication, do you know what you want and why? Knowing what we know about the complications of using a dopamine agonist, such as ropinerole or pramipexole, when ferritin levels are low, I would not be willing to take one of these drugs without a serum ferritin test. And, if I had any worsening in symptoms before I got the test results back, I'd immediately stop it. I's also only accept a very low dose to stat.

I got a bit carried away....hope this helps.

[rthom]

Yah, what she said!! LOL Thanks Ann, now I don't have a lot of typing to do--and you put things so clearly and politely. That document was exactly what I had in mind and just found it--lot of trouble with the computer being eally slow today. Anyway you helped me out alot, hopelully she will find that too.

The only other comment is that the Dr might want to check vitamin levels like D, B 12, calcium with magnesium, etc. If the Dr, asks you to take them no worries, it does work for some folks.

[rthom]

It's 5:30 here, I hope you have a great dr's appointment. I'm off to get some work done, so I won't be checking in till later this am. Good luck.

[KJOYCE0003]

I had my appointment today and I think he is going to be very helpful. He did a blood test for b12,D and iron levels. He also did some x-rays of my lower back and seems to be very knowledgeable on RLS. He gave me clonazepam 0.5 mg to take a half a pill at night until the results of the blood test comes back. I am so grateful for all your help and support and I know this will be a long journey and I will for sure need more help when the doctor calls me back with the next step. I will just be happy when I find the right mixture for relief. My only question is what may you know in regards to the Clonazepam? Should this really help?? : ) He didn't seem very confident about it he almost was like, let me just give this to you so I did give you something, if that makes any sense.

[Polar Bear]

I am glad that you had a good feeling with your doctor at appointment.
When you say he did blood test for bt2.D and iron levels, did he arrange for a ferritin serum iron blood test?
I understand that you did not wish to appear like a 'know all' at your first appointment but did you have the opportunity to show him and discuss the document referred to in the link in Ann's post. This is a very good document with regard to the various lines of medication treatment available.

I have not used Clonazepam, but believe that it has a long half life and could cause next day drowsiness, also that it peaks at about 4 hours after ingestion.
Others who have used it will be better able to tell you how it worked for them.

Hopefully you will hear from him soon, that he has arranged for a ferritin serum test, and that he is RLS/WED treatment aware.

One thing is for sure, you deserve treatment. Don't believe that you should grin and bear this, no matter what friends or family may say. At 29 years old you have a lot of years ahead of you and deserve to live them in as much comfort as possible.