Newly Diagnosed.

For everything and anything else not covered in the other RLS sections.
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tinamarie
Posts: 1
Joined: Wed Jun 16, 2004 2:23 am
Location: Boston MAssachusetts
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Newly Diagnosed.

Post by tinamarie »

I'm only 17 years old, but since I was about 12 I've been telling my doctors there was something wrong with me. I was always tired, I wake up at least 4-5 times a night, any little thing I did made me exhausted, and at night while trying to fall asleep I found myself trying to just get comfortable. My doctors kept saying it was all in my head and I was just depressed and needed more sleep.. completely ignoring the fact that my father has sleep apnea.. which runs in my family. I did the sleep study in April and two weeks ago I got the results that I have RLS.. but I've really never heard of it and that's why I've come here to find people who also have it. I havent seen a specialist yet because they're backed up for months.. but is there ANYTHING I can do for temporary relief?
____________________________
xo Tina Marie

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Welcome Tina

Post by becat »

Hi Tiny,
Welcome to our ever growing club. You've done the hard part already my dear, you had enough fight to make them listen. BIG ROUND OF APPLAUSE. Some of us are......older than you......by far and are still fighting to find someone to listen.
NOW, your work begins in here. Educate yourself on this site, there are others out there as well. Start reading the medical and sci. just above here. Read the different post in all the forums. You'll not only learn from others, but maybe you will teach us as well. You can even come in to vent if you want to.
Great people to listen, question with you, and always support. You may want to start in the non-pharm forum. But here's a few yips for now.

*Hot baths just before bed, or even if you wake up and can't fall back to sleep.
*Calcium is one of natures relaxers, it's not just for strong bones. You'll need Vitamin C for the calcium to work.
*The B vitamins also work in soothing the nervous system, the also help repair.
****You may need an iron suppliment. Although, I think I read that it may be the way our bodies use or NOT USE iron......However, the facts are that low iron is an issue.
***I think most of us take different "RLS cocktails" of medicine, vitamins, whatever else we find that works. Massage helps some, do something mentally involving, i.e. the puter, paint, read, tear out a kitchen.......It helps to be mentally busy.
Tina, I'm so sorry you have to be here with us a such a young age. I can't tell you how proud I am of you. Your smart and willing to fight a good fight. I like that.
You keep us posted, ok?
Have a great day.

Minou

Hi, Tina

Post by Minou »

Hi, Tina!
All of us on this site have had to deal with people who don't take us seriously, are sure they have the solution ("just some nice warm milk before bed", for example) and doctors who have no clue as to the discomfort this syndrome can cause. It sounds to me that you have already come through a frustrating part of it! Good for you!

Now you need to find not only a really good doctor but one whom you can contact if you find something isn't working. You shouldn't have to wait a month or two to tell him if a medecine is causing side effects or has lost effectiveness. Be sure you can talk to him and that he explains things in a way that you are sure you understand. Ask him specifically how you can contact him if you need to speak to him quickly. ( I found myself once on a vacation in a different state, didn't have part of my medication, and it was impossible to get in touch with my doctor to give permission to the pharmacy to give me some! Never again! Fortunately, my husband fedexed my medecine to me. After not sleeping I couldn't even come up with that obvious solution!)

I'm surprised that there isn't a specialist in sleep disorders who can see you more quickly in the Boston area. Keep knocking at those doors. Tell them to contact you if there are any cancellations. You could even try calling them from time to time to check.

Finally, despite all the problems you may hear us express, you can deal with this if you just take one day at a time. Be good to yourself and do whatever you can to be healthy: exercise, good food, "play"time, etc.,. Read whatever you can about RLS, and write down questions. Hang on until you see the doctor. I have no doubt that you will find relief! Keep us up to date on how you are doing!
:)

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Boston Healthcare Providers

Post by sardsy75 »

Hi Tina :)

Welcome to the group! I'm Nadia, 28yo, a lil "quirky" and reside in the upside-down land of Aus. My "life story" is under the thread "Prescription Drug Side Effects" in the "New to RLS" section.

Enough of me! I did a search on Boston for you in the Healthcare Provider directory on this site and have come up with the list below. Even if specialists are backed up for a long time, take whatever appointments you can get and also, ask if your name can be put on the "cancellation list" so you might have a chance of getting in sooner if someone else cancels their appointment.

http://beta.restlesslegs.org/provider_d ... ctory.html

Nancy Huggins
Wang Acc 830
15 Parkman St
Boston MA 2114
617-726-1884
Nursing Education

Samuel Ellias MD
720 Harrison Ave Ste 707
Boston MA 02118-2334
Neurology

Brigham and Women's Hospital
David P. White MD
Sleep Center
Division of Endocrinology
221 Longwood Ave
Boston MA 02115-5804
617-527-2227
Sleep Medicine

Boston Medical Center
Sanford H Auerbach MD
720 Harrison Ave Ste 707
Boston MA 02118-2334
617-638-8456
Neurology
Sleep Medicine

Boston Univ School of Medicine
J Stephen Fink MD, PhD
Department of Neurology
220 Harrison Ave, Suite 707
Boston MA 2118
617-638-8456
Neurology

Boston Medical Center
Sanford H Auerbach MD
720 Harrison Ave Ste 707
Boston MA 02118-2334
617-638-8456
Neurology
Sleep Medicine

Daniel Tarsy MD
330 Brookline Avenue
Boston MA 2215
(617) 667-0519
Neurology

In the meantime, go and take a look at Jill Gunzel's RLS Rebel website at http://www.rlsrebel.com - a site which has some fantastic advice about how to combat RLS when you don't have (or have chosen not to have) any drugs to rely on. I have tried a lot of the techniques suggested and they DO work!

My own personal "top four" non-drug therapies for RLS are Massage, CranioSacral Therapy, long hot spa baths, and doing gentle leg stretches (just watch the stretching, there's a fine line between stretched and over-stretched!!). This may sound strange, but if you have a hobby that requires a lot of concentration this can also help when you are having a bad attack. Doing cross-stitch, drawing/painting, scrapbooking, reading a really gripping novel, basically anything that requires you to concentrate will help stop you "thinking" about your legs.

If you are unable to get any co-operation from your GP, find another one. There is no law that says you have to stick with one GP. If you do already have a good relationship with your GP, one of the first things you should do is get a complete blood workup done on the following things: iron levels, ferritin levels, magnesium levels, immuno levels, etc. Your ferritin level is the most important one as if it is below the normal range this could be a major contributor to your RLS. Your GP and/or specialist may also benefit from reading the RLS Medical Bulletin put out by the Foundation... the link is here (you will need access to adobe reader) http://beta.restlesslegs.org/pdf/2003_m ... lletin.pdf

Iron and Magnesium supplements may be helpful for you, but you should check with your GP as it is possible to over-supplement.

To help with your sleep at night try Valerian. It is a herb which helps the body to relax. It is Not a Sedative, but does help your system to wind down. Valerian comes in many different strengths, 100mg - 2000mg and from my own experiences, I have found the stronger the better.

Finally, we are all here for you! Feel free to get in here and vent away at any time. Someone's ears will always be available for "gnawing" on! We know what you are going through. Keep us posted on your "journey" as we are all more than happy to offer advice and sympathy.

You have come this far already and I know you can beat it! Take it one step at a time, one day at a time and most importantly STAY POSITIVE!!!

Lots of ((((((HUGS)))))) for you.

Nadia

PS - Jumpy...i know i've skimmed over a few things in the ferritin/magnesium area...you probably know more about this than I do!
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

I agree!

Post by jumpyowl »

You did just fine, Nadia. Better than I could for sure. Probably overwhelmed the patient. :) Tina, are you borderline anemic? When did you have a blood test last?

Are you sure the sleep study suggested that you have RLS? It can only tell whether you have PLMD which stands for periodic leg movement disorder. It can chck on leg movements and near arousals.

Only you can diagnose yourself for RLS. Do you have creepy sensation along your legs (paresthesia) especially when resting? Does it go away with moving your legs? Do you mostly have it at night? You see all the signs are subjective. This is why you have to make the diagnosis! :)

Inform us what is happening so we can help you better!
Jumpy Owl

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