OK, so what's next?

Anything on your mind that isn't about WED/RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
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HeatherB
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OK, so what's next?

Postby HeatherB » Thu Jun 11, 2009 4:03 am

I have had chronic pain in my head for 7 years. 2 months ago I found out I have chronic sinusitis, which in turn is causing the chronic pain in my head.

So I took a course of antibiotics, told to take my Clairitan every day, and was given Fioricet for the pain. The Fioricet didn't work so well, so I was put on Midrin. That didn't work either. So I was put on Inderal, a beta blocker, which causes RLS. I have primary RLS so you can imagine what it did to me. So I started taking Flexeril every night so I could sleep. Now all of this is with the Klonopin I take for the RLS.

I have a heart murmur, which causes palpitations. The Klonopin causes palpitations, the Flexeril causes increased heart rate, the Inderal slows my heart rate. The Inderal evens everything out, and is taking care of the pain in my head. Not to mention the migraines I have been having for 19 years. Cool.

So last night I start having bad chest pains. I told my mom if I could just belch I would be fine. She had to remind me that is a symptom of a heart attack for a woman. By 10 pm I couldn't take it any more and went to the Emergency Room at the hospital. They ran all their tests. I was there for 5 hours. :roll: So much fun.

Well, come to find out, I have GERD. Basically it is really bad acid reflux. So now I'm on Zantac as well.

That makes 7 and 1/2 pills I take every day. (I take 1 and 1/2 Klonopin every night.)

So I wonder now......OK, so what's next?

I am only 34 years old! I'm to young for all this!

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Postby ViewsAskew » Thu Jun 11, 2009 7:00 am

Oh, my. I imagine this is a bit difficult to handle.

Heather, please take this with several grains of salt....my family is riddled with autoimmune diseases, so I see them everywhere. From Hashimotos to celiac to lupus to alopecia to Graves, with have a bunch.

RLS is common with some autoimmune diseases, which I why I think I tend to make this association when anyone here mentions certain key words. Now, just because there is an association doesn't mean you have one of them....it just means that I see an association and it might be worth following up.

I immediately thought of my SIL, my hubby, and my best friend when I read your list. SIL has GERD, migraines, constant sinus infections....she has celiac. My husband does, too. While sinus infections are not common on a celiac list, we know at least 4 celiacs who had this happen....and the infections STOPPED as soon as they were gluten free. Weird. My hubby had GERD, RLS, and many other weird things going on. He also had severe chest pains on occasion (has been rushed to hospital several times), but he was always fine. They never could find a cause...until he was diagnosed with celiac. And, migraines are also a common celiac problem. Then again, over 200 things are common to celiac, meaning that you could have a lot of things that weren't celiac and it would sound like celiac! This is why it takes on average 8-12 years to get a diagnosis of celiac. It can sound like many things or nothing at all.

My best friend had chest pains, GERD, palpitations, and allergies (which seem not to be related, but do cause her many sinus infections), and she has lupus. Your symptoms don't sound like lupus in any way, but it's more the point that when a bunch of stuff is going on that seems unrelated....maybe it's not.

A 34 year old isn't normally suffering from all these things without some common cause. I don't want you to have anything at all! But, if it were me, it would be much better to understand why things happen and how they fit together, if there was a common cause. So, for me, it would help to think this might not be random and that finding a cause might actually improve things. But, I surely know that some people would find it terrifying to think about. My apologies if you are in the later group. Put hands over ears, close eyes, and say NAH NAH NAH NAH until you forget
:wink:
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HeatherB
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Postby HeatherB » Thu Jun 11, 2009 6:18 pm

I looked up celiac. I only have one of the things listed on there. Who knows though. I know my doctor is very good and maybe she can figure out if there is some kind of connection with all of this.

I know the RLS, and migraines are hereditary. My mom has them both.

I think I have had the gerd for some time now that I think about it, and I just never put two and two together.

As for the sinusitis, the sinus between the ones in the front of the face and the brain plus the one at the base of the scull are the ones that give me problems. It is never the ones in the front of the face. Go figure. That is why I never knew I had the sinusitis until I had the MRI 2 months ago.

I will mention the celiac to my doctor when I go the 17th of this month. See what she thinks.

Thanks for the information!

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Postby ViewsAskew » Thu Jun 11, 2009 6:26 pm

Heather, the problem with celiac is simply that no two people have the same symptoms. The sites list the most common ten or 15 things. But there are over 200! You have several that my in-laws have.

Again, that's not to say it's celiac. And, without GI involvment, few if any docs would even run a test for you. Research shows that GI involvement is not as common as once thought, but the doctors didn't get the memo, lol.

And, again, I'm not saying it's celiac, either. Just that this is a LOT of stuff for one 34 year old to be dealing with without some systemic cause. It could be just chance....but it could be related to something. I don't know what they thing is. I just mentioned celiac because this is what my in-laws have and your symptoms happen to be similar. My SIL's main symptom is constant ear and sinus infections. That's not common to celiac, but other celiacs have had it as their main symptom, too.
Ann - Take what you need, leave the rest



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Postby HeatherB » Fri Jun 12, 2009 4:35 am

You are right. I will check with the doctor and see if she will do whatever tests need to be done to see if celiac is the cause.

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HeatherB
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Postby HeatherB » Thu Jun 18, 2009 3:18 am

So I asked the doctor today if she thought it could be celiac, and she said no she didn't. I trust he judgment. She has done right by me the whole time I have been seeing her.

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Neco
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Postby Neco » Thu Jun 18, 2009 3:43 pm

Well, my doctor told me I wasn't lactose intolerant, when I clearly was and I finally broke down and bought some Lactaid and marched into his office next visit to say "Told ya so".. I trust him with my life as much as anyone could, too.

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Aiken
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Postby Aiken » Thu Jun 18, 2009 8:12 pm

Testing for celiac isn't that hard. I've been tested (and don't have it). Might as well get the test... worst that happens is you don't learn anything new. Best that happens is you find out what you need to do.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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Postby ViewsAskew » Thu Jun 18, 2009 9:14 pm

And, my point really isn't that is MUST be celiac. Just that this is a LOT of things and it's easy for a doctor to miss subtle things that may go together. If it were me and I was worried that this was a lot going on, I'd want to know what could potentially be causing it. Maybe it's not related....but maybe it is.

Doctors make about 15-20% mistakes in judgment related to stuff just like this. Good doctors do this, too, not just crappy ones! It's easy to make errors because we see what we want to see and we lose some objectivitiy. Maybe they don't want their patient to have a bad thing. Maybe they think the patient is too young, too healthy, to thin. Maybe they ascribe it all to the patient being fat or diabetic.

The point is simply that when it doesn't seem right or when you really thing it could be something else....it could be.
Ann - Take what you need, leave the rest



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Postby Neco » Fri Jun 19, 2009 2:07 pm

I think the important thing is to ask your doctor why they believe it could not possibly be celiac.. Often we get answers from doctors and just say "oh, ok"... Instead of saying "Well, why not?" Also ask them, "well I have a lot of problems and if they are not caused by this, then what do you think is causing them?" And the funny thing is, if they say "I don't know", that leaves you open to respond "You DON'T know? But you just said it WASN'T celiac? How can you say that if you don't know?"



If you really want to take this test,
I would suggest just telling him you want the test, and if he won't have it done, then to please give you a referral to a specialist who will.

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HeatherB
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Postby HeatherB » Fri Jun 19, 2009 2:48 pm

I see everyone's points. I didn't question her. She has always been willing to do whatever tests I have asked for. It was my idea to do the MRI that found I have the chronic sinusitis. I can't get back in till next month, but I will insist on getting tested.


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