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booth205
Posts: 10
Joined: Wed Sep 03, 2008 4:16 am

New To Site

Post by booth205 »

Okay guys and gals here is my story..
I am 27 will be 28 september 5th. I have had problems with my legs for a few years now but in the last 2 months it has been pure HELL!! I have not slept in my bed for 3 weeks and don't know how much more I can take. I have polycystic ovaries, hypothyroidism, infertility issues and now this. So, with all that being said my husband and I have been trying to have a baby for 6 long years. I have had 2 losses, the last one 3 years ago. But at the end of the month I am supposed to be back on the fertility meds. I went to a neurologist today. Because of my circumstances and wanting a child he said he was limited to what he could give me. I know this is true b/c I have done ALOT of research. I have to be very careful b/c my main desire is to have a child. So, he said he could only give me Klonopin. He said it was very strong and should help somewhat. Now I am stuck b/c of all I have read about withdrawals from this drug and the lack of evidence/studies taken during pregnancy.
I know most narcotics are safe during pregnancy b/c the fertility meds make me sick and the doc usually will give me oxycodone WHEN NEEDED. Now, I do NOT take this on a daily basis, in fact I have not taken it in months. We have not been able to start fertility treaments due to my thyroid level. That's why we have to wait until the end of the month.
So...this is my story and need help. I need a GOOD doctor, inputs on medicines and anything else.
By the way, my husband and I have 2 wonderful adopted little boys. So, even if the Lord doesn't see fit to bless me with a child naturally, HE already has in my heart!!
Please keep me in your prayers.
Also, the doc took my ferritin level today. Should know the results tomorrow, will respond as I know.
Now please..comment, comment comment and tell me what I should do!!
Thanks ALL and God Bless!!
Amy

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
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Post by SquirmingSusan »

Hi Amy, and welcome to the forum. Sorry to hear that you're suffering so much with this condition.

About the meds and pregnancy - I would seriously question using clonazepam when trying to get pregnant. As I recall, the benzos are some of the worst medications to use while pregnant. I think they're category D. You can look that up, though, yourself by going to drugs.com or another site that gives information on various medications. I think the dopamine agonists like Mirapex and Requip are also bad that way. I also think that you're right about certain narcotic painkillers being relatively safe during pregnancy. I know that methadone has been widely used during pregnancy for heroin addicts, and that it's relatively safe, although there is a risk of the baby being born addicted. (Again, always do your own research - I'm not a doctor!) I have a friend who took anticonvulsants when she was pregnant and things turned out OK, but there are risks with those and they don't always work well for RLS.

In this forum there is a "Special Populations" section which has discussions about pregnancy and RLS. You might also wish to look at http://www.rlshelp.org. Dr. Buchfuhrer runs the forum and you can probably find answers to your questions by searching the forum. You can also write to him directly, and he often answers questions the same day.

Best wishes with it all. I hope you can get some relief!
Susan

booth205
Posts: 10
Joined: Wed Sep 03, 2008 4:16 am

Talked to fertility doc

Post by booth205 »

To all who read my story.. I talked with my fertility doctor today and she said do NOT take Klonopin. She said it WAS a catagory D and would be very unsafe. So, I called the neurolgist I saw today to tell him b/c he said notify him of her decision. He NEVER called me back. So, another restless night is in the works, I guess.
I have did research and found a few painkillers that are in the B catagory and would be safe. However, it's getting the doc to agree.
I think I am back to square 1.. :cry:
I really need to find a good doc in Alabama!!! And, close to Birmingham!!

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

b, thanks for posting again. I think SS's idea about Dr. B's column is a good one. Also, I have very good friends, for whom we are godparents, who successfully conceived after 3 implants. So, I'm hoping you will be as lucky.

Best wishes,

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

b, From Dr. B's book:

".... the following Web sites can be searched for the most current information on medicines that are safe for use during pregnancy: www.motherisk.org; www.perinatology.com; and http://orpheus.ucsd.edu/ctis/.

Dr. Buchfurer's book "Restless Leg Syndrome" also has several pages discussing rls/medicines related to pregnancy. Page 128 has a table with the Risk Categories. Maybe you could find the book at your library and give it a glance. Cabergoline (Dostinex) was mentioned in the book as having some research regarding its use during pregancy (B).

Sorry, have no experience with doc's in Alabama. I often ask members to check with a University Hospital in an area as they often have an rls clinic or something of that nature. Does not necessarily mean that even in this setting you are getting the "best" or what you need but it may be another option for you to consider. Certainly think in your somewhat unique situation that communication between doc's would be crucial.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

booth205
Posts: 10
Joined: Wed Sep 03, 2008 4:16 am

update

Post by booth205 »

Okay..
First of all, thanks to all who responded and gave advice. It is ALL greatly appreciated!!
Now, the doc called today and my ferritin level was normal, I think he said it was 93. He also said b/c my fertility doc said no to Klonopin that there was nothing else he could do for me or give me. I literally started crying on the phone. I am so exhausted and sleep deprived and begged him to do something. So, he finally gave in and called me in Ultram. I have done research on this drug and it doesn't seem strong but who knows maybe it will help!! However, if it doesn't work he will not do anything else for me.
I don't know what to do. There are not any doctors that want to help me. He will be the 3rd to turn me away.
And, my husband and I talked about putting pregnancy on hold. But, no matter what RLS is still going to be here so why should we put it on hold. I guess docs in Alabama are all scared to give narcotics b/c of all the people who abuse them.Although, they should know if I want to have a baby, have been trying for 6 years and continue with treatments I would not abuse it.
So, who knows. Maybe Ultram will atleast let me rest for more than 2 hours tonight.
I will update later tonight if I can't sleep or tomorrow if I can sleep.
Blessings to ALL!!

booth205
Posts: 10
Joined: Wed Sep 03, 2008 4:16 am

update

Post by booth205 »

Hello All,
Well, Ultram was no good. I am about to go nuts and don't know what to do. Maybe I need to just go to a pain clinic like someone suggested.
UGHHHH!!!!

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

b, don't dismiss the pain clinic or that it may be necessary. If you will get treatment that will help get things under control, even for the short term, that will be good. Then, you may have time to look at developing a long term plan be that a new rls primary care or whatever.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

booth205
Posts: 10
Joined: Wed Sep 03, 2008 4:16 am

Still bummed

Post by booth205 »

Hello,
Just an update.. My doc increaes the Ultram to 2 daily. It has still not helped. I called this morning and left a message with his nurse. She called back and said she would tell him but she didn't think there was anything else he could do. I have serched the internet non-stop for a specialist in Alabama and even pain clinics but everyone needs my medical records for the last year and a physician referal and my docs don't want to refer me. :cry:
If I could even find a doc in Georgia or Mississippi I would travel there. That's how desperate I am at this point. I just need relief!!
Any suggestions on docs near Alabama??
Thanks,

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

b, I believe Dr. B suggests possibly 1 to 2 50 mg tablets every 6 hours as a max or upper limit. So, you may have some room to up the dose. But, believe the seizure risk is something to consider at higher levels (perhaps 400 mg) There is also an Ultram CR I believe which Dr. B recommends a 100 mg to 300 mg range. Don't take this the wrong way, and perhaps it speaks to how "people" are treated, but one of our canines is prescribed 100 mg daily for pain. Now, are we worth any less consideration.

Also, don't let the nurse make any decision and demand a face to face with the doc.

Can't help you on the docs in that location but perhaps others will have a suggestion.

Best wishes,

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Why don't your doctors want to refer you to a pain clinic? That's just absurd if they won't treat you. You could try going to the emergency room if things get too bad. That's a big hassle and you may get a doctor who is clueless, but you may get one who will help.

About your medical records - those are yours and you should be able to get them for free or for a small copying charge.

It's just so frustrating when you can't get a doctor to prescribe the medication you need. I know. I've been there. I go to a pain clinic, but it took a while to get in there.

It might be worth flying to see one of the doctors who WILL treat you.
Susan

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