Pramipexole and serious side effects

[jakesmom]

Thanks Corrie,

I checked on Mayo Clinic and it too, unfortunately causes slow heartbeats. Couple that with my currently augmenting and, it means I need to get off DA's.

Thank you !!!!!!

[jakesmom]

What should I take to new GP appt? I don't want to bombard her, but I want to take the most compelling item or items. I have my list of failed attempts, major side effects, and goals for the visit, but as far as supporting documentation, I have the following.

1. Email from Dr.B acknowledging my dose is too high and the changes he recommends.
2. His article entitled Strategies For The Treatment of RLS.
3. Mayo clinic printout of side effects with the relevant ones hi lighted.
4. The little green book.

If she is willing, I will give her Dr.B's contact info.

[Polar Bear]

Your supporting documentation sounds good.
But beware of overloading GP -= you may have to prioritize.
Consider your goal for this appointment.... help to get off the DAs.
What you have tried and has not worked.
What you are taking at present - with supporting documentation showing it is too high.
You want off it and you have Dr B's email stating it is too high and his recommended changes.

Take it from there as to how much she is willing to take on board on one visit.
I don't know how long your appointment is and can only speak from experience of the time allotted for a GP appointment in the UK.

[ViewsAskew]

Did your cardiologist write anything down?

Looks like a great list to me. Fingers crossed for you.

[jakesmom]

The search for a GP is over.

I explained my situation, showed her the chart on augmentation, showed her my medication list and she exceeded my expectations.

She knew about ferritin and Vitamin D and had both tested. She gave me a 1 month taper schedule for the pramipexole, and oxycodone to help with pain. I can't take a month off to go thru the DAWS, but her plan gets me off DA's in a month and gives my system 3 months to be free from it before I go back to cardiologist.

She said she had numerous patients with WED, but I was her only serious case.

She also already has a plan in mind for 3 months out on treatment options.

No more neuro.

[ViewsAskew]

I am SOOOOOO Happy for you! This is wonderful news! I can't imagine how you feel - what a relief!!!!!

You did a GREAT job taking care of yourself, being proactive and helping ensure you get the treatment you need. You deserve a big pat in the back.

[jakesmom]

It was a huge weight off my shoulders.

I offered her my copy of Clinical Management and she readily accepted it.

Thank you, and many others for all of your help and pointers.

[Polar Bear]

Congratulations, you should be very proud of yourself, feeling as poorly as you did you still got out there with determination.

[jakesmom]

I am still amazed that a small town GP gave me better treatment than a neurologist. I guess it boils down to taking the time to listen. She had never treated serious WED before, but she knew how to. She knew about ferritin, but my neuro never mentioned it.

She spent a good hour with me and never made me feel like a drug seeker or looked at me like I was mental.

Next time I see her, I am going to see how she feels about my giving her name out on here. There are a lot of people who could benefit from her knowledge and compassion.

[badnights]

OK, I done crying now.
OK, not quite.

I feel so relieved for you. Finally you get to see what true care looks like! Finally, you can heal (if that's the right word) with the support of a caring doctor.

Your new GP sounds perfect. All we need is a physician who is willing to learn! You wouldn't think that would be so hard to find...

Your struggle to get this doctor has been crazy. Not only could you not find something as simple as a doctor willing to learn, you were actually being put in harm's way by the very person who was supposed to be protecting your health. I still can't believe how bad she is, your ex-neuro. But I won't dwell on that....

I will dwell on how well you will be, with a doctor who cares and listens and learns, and the pramipexole taper in progress, and oxy to cover the symptoms, and a healthy future being mapped out.... !!!!! Like Ann said, you're to be admired for how you're dealing with it all. You educated yourself and kept fighting for what you needed, even when no one was lending you a hand and all the people around you were trying to tell you otherwise. You're amazing.

[jakesmom]

Beth,

Truthfully, I wouldn't have found her without this site. I never dreamed a young GP would be my best bet. I would have never known what augmentation was or what ferritin levels meant, or that there were others like me that "typical" treatments didnt work for. Not to mention Dr. B, who substantiated my claims and gave me a medical leg to stand on.

I must tell you, I feel a HUGE sense of relief because this DR. showed my mom and my friends that I knew what I was talking about and that I wasn't making the whole pain thing up; that I wasn't being fed false information from the big, bad Internet.

My finding her did make me breathe a sigh of relief and renewed my faith in doctors. I know not everyone is religious, but on Sunday, she joined the church I just started attending. Our Sunday school class was about listening and i shared some of my story about hoping to find a doctor who would listen and not judge me. As I was preparing my documents to bring to the appointment, I prayed that I would find the words to say and she would be receptive. I didn't know she was the same person from church until she walked in the exam room. When she did, I just relaxed and calmly presented my case. I resisted the urge to hug her as I left.

I hope this can be a mutually beneficial relationship. Surely I am not the only person in or near Arkansas who is having this problem. The wait to see her is 2 weeks, she is proactive, compassionate, doesn't watch a clock, and has a gentle demeanor. How many people's lives could she touch if she allows me to share her name here? She could put her town and herself on the map if she so chooses. I would love for that to be my way of giving back to the people on this site who carried me along, shared their doctor, asked their doctor questions about me, and who just let me rant and cry.

So, no PB, I'm not trying to pull a fake, beauty pageant wave and say I just want world peace, but this wasn't something I persevered through and won, I'm not trying to blow smoke up anyone's rear end when I say this was a victory of this site and its people and especially it's moderators, namely you and Ann.

[ViewsAskew]

jakesmom, it's easy for us to give advice and support. Sure, we listen and hopefully provide good, solid information. And I am so appreciative that anything we did was helpful. But, you're selling yourself short, my dear. You had to follow through. You had to keep going when it seemed there was no where to go. Ideas are a dime a dozen - I know, I have a lot of them! Action and follow through are in another class altogether.

What a great story about this doctor being in your church when you shared what you needed. It can be interpreted many ways - but I see, again, that YOU were standing up for yourself and asking for what you needed, even in the face of extreme adversity. I hope I have as much strength the next time it's needed in my house.

[rthom]

Woohoo Great news!!! I'm very pleased for you and wouldn't it be great when soon you are once again getting sleep and feeling yourself.
I agree holeheartedly about the moderators, I often wonder how they get the stregnth to moderate when they to are not getting sleep--in the bad times. Like angels I figure.
Your mom must be so pleased for you too.
Thamks for sharing the great news as well as you have--it helps encourage and touch those who brouse through the site. What a great happy ending to your story--(or at least for now-lol)
Prayer never hurts anyone I figure and if it helps, even just mentally--why the heck not--we all need the positive we can find in our lives.
Have a terrific day!

[jakesmom]

Thank you rthom,

Just the relief of having a working plan and the support to see it through is a huge relief. I didn't try any of the new meds last night since we had some touch and go moments with storms and tornados and I didn't want to sleep through it due to the pets.

Today is a new day. The new 1 month kick pramipexole plan is in action and mentally, I feel like a new person.

I look forward to seeing who I am when I am DA free. Hopefully the weight will come down and the short term memory will improve.

Good day to all !!!!

[debbluebird]

Wonderful news.