Update

[Betty/WV]

Hello everyone, haven't been around for a while. Everything has got worse for me. The neuro I went to left the area and I see a new one Monday. The Mirapex has helped the WED/RLS 80% but sleep is still just 2 or 3 hours at a time. But I am exhausted all the time. I feel like a zombie. Most days I don't even get dressedd. I didn't drive for over a year because I was falling a sleep driving. Depression is very bad. Gained about 30 lbs since starting the Mirapex. I am at my wits end (again). I need to get off the Mirapex but then what???? Or is it to late to get off of it, has the damage been done. I am 77 years old and had this "monster disease" for about 50 years.. No one understands what is wrong with me and if I try to explain they don't get it. I know this is just venting, and no one can do anything to help me. I feel so desperate. Sorry I can't sound more positive.

BETTY/WV

[Betty/WV]

Well, I went to my new neurologist today, he seemed very knowledgeable. He gave me a complete checkup, did blood work to check my ferritin levels. Gave me information on the neuro patch and horizant. I am now on Mirapex. So when I go back on Oct. 1st I will tell him if I chose to try one of the other drugs or stay on the Mirapex. As of now I think I will just stay with the Mirapex. He said he never heard of Mirapex causing weight gain. Well, reading posts here on the discussion board I have heard of many people with the complaint of weight gain on Mirapex. I guess, this is just something I will have to deal with, there is no magic pill, no miracle cure. I'm just trying to cope.

[Polar Bear]

Betty/WV - you sound pleased that your new neuro may be one of the ones that knows a bit about WED. Actually checked your ferritin levels.

With regard to Mirapex and weight gain I did a search on Bing and a few references came up.

I wonder does the drug itself cause any possible gain in weight (while we continue to eat the same as always)
or is it the possible side effect of compulsive eating i.e. we really do eat more.

[ViewsAskew]

I think it's the compulsive behavior that causes the weight gain.

Betty, I'd encourage you to try Horizant. It works well for many. The worse that can happen is that it does not help you. If it does not, then Neupro (which is the patch), may be a good option. You have not been happy on the Mirapex (pramipexole) for a long time. Why are you thinking of staying on it?

[Betty/WV]

I think it may be the compulsive behavior also of Mirapex that may cause the weight gain. I just know that I have had a big weight gain. But in reading about the Horizant and the Neupro patch they can also cause compulsive behavior. With Mirapex I have also had some sexual compulsive behavior. (Imagine a woman my age, 77) Plus there were some other serious side effects with the other two. I guess trying something different is a little scarey and I know what Mirapex does but dont' know how I will react to the Horizant and the Neupro. I am still in the debating stage about whether to change or not. I see the Doctor again on the 1st of Oct. Another problem I must check on is if the other 2 are covered on my insurance.

One more thing----on the papers I filled out for the doctor, I had written WED/RLS and he ask me what the WED was, I told him and he said , "Oh, you are using old terms for RLS". I said I thought that was new because the WED/RLS foundation had changed the name to Willis-Ekbom Disease. He knew all about who Willis and Ekbom were but diddn't know about the name change.

Thanks as usual for you input. It will help me make up my mind as to what to do about the meds change.
Thanks.
BETTY/WV

[Betty/WV]

Also, he wants to use the Horizant with the Mirapex, is that the usual procedure????????

[badnights]

It depends if you're augmenting and how severely, and if you're experiencing other dangerous side effects. A mild augmentation could be controlled by adding horizant, maybe, and if you're not augmenting at all, adding Horizant might help with the sleep issues and even enable you to lower your Mirapex dose. There is certainly nothing wrong with using both together, as far as people know.

If you're augmenting or experiencing compulsive behaviors, you should be taken off Mirapex completely. And you are experiencing compulsions. HAve you told your doctor this? Did you just vaguely complain about gaining weight? Because that's not good enough. He can't read your mind. You have to use that word "compulsion" in your speech when you tell him.

Tell him also you don't bother getting dressed some days. Are you taking an anti-depressant?

Third, tell him you don't sleep more than 2-3 hours at a time, and are chronically tired as a result; and you heard that awakeness is a part of the disease, and can he find out more about that for you?

You are absolutely right about the name, as you know.

[Betty/WV]

Thanks Beth: I am experiencing compulsive behaviors, and I think the weight gain may be due to compulsive overeating. I have taken neurontin before and after checking with my pharmacy, Horizant is a long acting neurontin and the neurontin didn't help when I took it. The co pay for the Neupro Patch is $70.00 and with all the other medical costs, co-pays, payments for my suppliment, etc. etc. etc., I don't know if I can afford it. I already take several other meds with co pays.

I have other health issues, arthritis, fibromyalgia,heart etc. and sometimes I don't know if the problem (especially pain) is from the WED/RLS or one of the others.
Of course being 77 doesn't help.

I know I had talked to DR. B by email and he said my case was so complex I needed a good doctor close to where I live. Easier said then done. I'm just getting very tired of trying to deal with all this.

I do appreciate so much the help, and kindness from you all. I go see the doctor on Oct. 1. I'm just trying to decide what to do before I see him,

Thank you.

BETTY/WV

[Polar Bear]

BETTY/WV - A good idea to be thinking ahead about your appointment on 1 October. I always have notes, condensed to a few words, to make sure I have mentioned all that is needed.

Also as badnights has said, please tell him how low this all makes you feel, about not bothering to get dressed some days. Highlight where necessary on the printed out links in each of the Moderators' signatures.

I know you have been feeling down this past while and it can be difficult to pick yourself up...... but hey... we can be feisty old birds if necessary.
I am standing/dancing as I type this. It's 6.20pm and I gotta go move. I hate this disease also, we all do.
Do you take anyone with you into your appointment with doctor for support and to confirm just how severe your symptoms are.

[Betty/WV]

No, I don't take anyone with me. My husband will take me but I don't want him to go into the examining room with me. I don't want him there when they weigh me. LOL as if he didn't know how fat I am. And he doesn't understand my condition anyway.

I alway make notes also, so I won't forget anything. Sorry, I didn't understand what you meant about "highlight where necessary on the printed out links in each of the Moderator's signatures". Are you saying to print the Moderator's comments and show them to the doctor? I have found that you have to be very careful with doctors, they aren't very humble and don't want to be given advice on how to treat a patient.

I have one friend who really understands how bad I feel. And I think that is because she has severe back pain and so she can relate somewhat. But she won't be here (on vacation) when I go to the doctor.

I know my atitude isn't very positive. I wish it were.

BETTY/WV Thanks-----



Thanks again.

[aveerik]

Betty please make sure to share the compulsion issue, the sexual compulsion as well as the eating. Please do not be too embarrassed because your doctor needs to know and the sexual compulsion may make more of an impression then the eating.
The moderators have given some great advice above so if you can afford to try a new med it seems it is worth a try. Always ask your doctor if they have samples. I worked in doctors offices for over 10 years and we always had a ton of samples. Some patients got their whole supply from us because they had no insurance or couldn't afford them. Even some of the mean doctors I worked with would gladly give out samples as the drug reps always gave them to us.
I know what you mean about doctors and their ego's and it is scary to tell/show them info but if you can highlight some very key issues and just ask what do you think about this? It may not work, they may say something like all info you get on the internet is crap, but it is worth a try.
I am sorry things are so rough right now, I wish you the best of luck at your October 1 appointment. Be confident that you can present information to your doctor without hurting their ego. Practice how you say it before hand. You deserve to be physically and mentally healthy but sometimes it is hard work to get there.
Hugs to you:)
Robin

[ViewsAskew]

It's really hard to be positive when it seems that we don't get much improvement, our doctors don't really get it, and there seems no place to go but down!

What do you want to happen at the appointment, Betty? If you can create a goal, maybe we can all work together to see how you can achieve that.

[Polar Bear]

Betty/WV - Yes, I was suggesting that you look at the links in our signatures, ViewsAskey, badnights, Polar Bear and see what is particularly relevant to yourself. You could then print it out and highlight the relevant section, saying that you think it seems pertinent to your situation.

Do you have Dr Bs book. I have sent for the new edition (lent my old one out) and it is pretty convenient to use a post-it to mark a relevant point in the book to discuss with GP.

Make your salient points, not to many because we don't want Dr to 'glaze over.
Compulsions -sexual and eating.
Not getting dressed every day.
Plus........ other points.

Perhaps even write down these notes and give them to him.
This could make an opening direct to the point without trying to 'lead up to it'.

[Betty/WV]

I'm so appreciative of your posts. Yes, I have 2 of Dr. B's books plus a couple other books on WED/RLS.

That was a good idea, Ann, about creating a goal for my Dr.'s appt. Really my problem isn't just the WED/RLS, since I have multiple ailments, arthritis, fibro., heart, high blood pressure, high cholestrol, hiatal hernia. So half the time I don't know what is bothering me the most. I have doctors for the other ailments. And I take so much medicine already, I don't want to add any more to it And sometimes I think some of the medicine I take is part of my problem. This neurololgist will only deal with my WED/RLS. So I guess my goal would be just to be able to cope with day to day life. I don't think there is a complete solution. If I just weren't so tired all the time, and felt like doing the ordinary things that I used too. But of course, to a limited degree. And since I have this apprehension about medicine, I have a fear of trying something else. Such as the Neupro Patch I think the Horizant is out, since it is just a long acting neurotin, and I have been on the neurontin and it didn't help at all.

I have written down the most important things I want to stress to the Dr.
The compulsions, sexual and eating.
Not getting dressed, being so tired and of course all this leads to depression.
I did mention these things to him But maybe I need to stress them more. When I mentioned the depression, he ask me if I ever thought of suicide I told him no, because I never have. So I think he was paying attention. And it was my first visit to this doctor. The second visit should give me a better idea of what he is like.

So I will apply some of the suggestions you all have offered. I will keep you updated. I thank you so much.

BETTY/WV

[Polar Bear]

On the subject of going to the doctor armed with information which can take up too much of the appointment time while doctor reads it.

I have been considering preparing an information sheet with regard to my WED symptoms (and what would be my goal at a dr appointment) together with the relevant attached supporting evidence.

I will soon have an appointment in another matter and had planned at that time to say something on the lines of ...... ''''I will soon have an appointment with you in regard to my WED/RLS and think that this information would be most useful for discussion and guidance and I would appreciate your views. I'm giving it to you now so that you have time to read and consider the content prior to my appointment.''''

I think we nearly have to go eyeball with the Dr.....'''' This needs sorted out'''''...... as opposed to just mentioning problems just as an aside.