continued........

byrd45 Mon Jan 05, 2009 7:43 pm

>From: "SIZZELIN_WIBBET3" <wibbet@sbcglobal.net>
>Reply-To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>Subject: Re: Weekly Discussion-RSD and the Face and Teeth
>Date: Fri, 3 Mar 2006 14:20:06 -0800
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> Weekly Discussion-RSD and the Face and Teeth
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> From:
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> I ALSO HAVE RSD IN R.UPPER SPREADING L.UPPER SPREADING TO
>LOWER NOW DOES IT END? I HAVE HAD A SPINALCORD STIMULATOR PUT IN IT HAS
>HELP SOME NOTHING ELES THEY TRIED DID. I SEE A DR. EVERY 4-6 WEEKS THAT
>REALLY HELPS TO. MY BODY RESPONDS GOOD IN THE WARM POOLS WITH THE
>STIMULATOR ANY ONE ELES HAVE THIS RESPONSE? DIANA
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Recommend Delete Message 3 of 3 in Discussion

From: byrd45 Sent: 3/20/2006 8:24 AM

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Recommend Delete Message 11 of 15 in Discussion

From: SIZZELIN_WIBBET3 Sent: 3/5/2006 7:40 PM
THANKS ROBYN
I GO WITH MY HUSBAND ONLY. THEY SEEM TO TREAT ME BETTER ( HUMAN) DIANA.

Reply
Recommend Delete Message 12 of 15 in Discussion

From: countrygalinpain Sent: 3/5/2006 8:50 PM
ROBYN,
YES, MY EYES BURN LIKE CRAZY AND ARE SENSITIVE TO LIGHT. I HAVE ALSO STARTED WEARING GLASSES FOR THE FIRST TIME IN MY LIFE. I HAVE AN ASTIGMATISM AND MY LEFT EYE BLURRS REAL BAD. SO IT HAS AFFECTED MY EYES BIG TIME. I HATE THAT ANYONE HAS TO SUFFER THIS WAY. THE EYE DOC GAVE ME SOME DROPS THAT ARE SUPPOSE TO RELIEVE THE BURNING BUT NOTHING WORKS SO FAR. I DOUSE THEM WITH VISINE BUT IT COOLS THEM DOWN FOR JUST MINUTES.
HUGS,
CHRISTY

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Recommend Delete Message 13 of 15 in Discussion

From: byrd45 Sent: 3/6/2006 7:42 AM
Hi Diana I am glad to hear that! It helps alot to take someone with you.
Love,
Robyn

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Recommend Delete Message 14 of 15 in Discussion

From: byrd45 Sent: 3/6/2006 7:49 AM
Hi Christy,
Mine burn alot too and I haven't found anything that has helped them either. I have some blurred vision at times comes and goes and I have worn glasses for years always was nearsighted. Now since the RSD my presciption has changed for the first time in close to ten years and my close up vision(far sighted) is affected now. Anyhow so I had to switch my lenses to progresive lenses which cover both problems.It really does stink! The sensitivity to light is a real problem for me lately. I am going to have to get a pair of prescription glasses that are real dark sunglasses for when I am outside. It is becoming a real big problem for me.
Love,
Robyn

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Recommend Delete Message 15 of 15 in Discussion

From: byrd45 Sent: 3/6/2006 8:01 AM
Hi Trudy,
You are so right that alot of the doctors just don't care anymore about their patients feelings. For them it is just about money. This is really sad that people are treated this way and all they want is a little compassion. I consider myself very lucky that I have found one of a vanishing breed of doctors. She listens to me and writes down changes at each visit, she is caring and understanding, she goes above and beyond the call of duty if I could clone her I would. Her only fault is she takes her time with each patient so sometimes you wait like 45-60 minutes before you are seen. I consider this a very small price to pay to be treated like a human being. She has done the most for me in getting my pain levels as under control as possible. She is very knowledgeable about RSD and also all the meds that are used to help the pain. I still see Dr. Swartzmann about once a year but I see her as needed once every 1-3 months.
Love,
Robyn

byrd45 Mon Jan 05, 2009 7:43 pm

Reply
Recommend Delete Message 1 of 3 in Discussion

From: byrd45 (Original Message) Sent: 3/20/2006 8:15 AM
Hi Everyone,

This week we will be discussing RSD and the Teeth and mouth. Some of you might be already saying huh!? what has that to do with RSD, or you might be thinking wait just one second does this have anything to do with the problems I am having with my oral health. Well it is a fact that RSD can spread as we all know. It is also a fact that RSD can spread to any part of the body even though there are members of the medical profession who would deny this fact until they are hoarse. When I was first diagnosed back in 2001, I never would have thought in a million years, that this disease could have an effect on where I was originally injured, but the rest of my body as well. Now I'm not trying to alarm or upset anybody. Some people don't spread as fast as I did and some not at all. We are all individuals, and as such have our very own individual experiences with how the disease acts. In my case it has spread from arms to right leg to face and then full body and internally. This may not be the case with you, but I feel it is real important to bring these things out there. That way if one of us is having problems and is scared and doesn't realize what is going on they can benefit from it. Anyhow, this is what has happened since the RSD has spread into my face. First the headaches, numbness, skin sensitivity, felt like bugs crawling on my scalp, and sharp pain in the right ear(RSD is also in my right inner ear I found that out later) and jaw. I also have burning in my mouth on my tongue at times, and in my eyes. I also have numbness in my mouth in places, so I have to be real careful with hot food. I have already burnt my tongue and mouth more times than I care to think about. Recently, I have two broken teeth. My doctor feels there is a pretty strong chance that these teeth broke because of the RSD especially since the have both happened within a few months of each other. Now these were both teeth that were weakened which is why the RSD settled there. If you have a weak spot (or injury) in your body than the RSD can be more likely to spread there. Here is what Dr. Hooshmand said on the subject:

RSD PUZZLE #3
RSD and TMJ Pain

"Your injury was to the right hand causing RSD. This is in no way related to the right TMJ pain or the loss of teeth that you have developed since".

As remote and unrelated as they may seem, RSD can and does result in cranio-cervical pain, muscle spasm, TMJ disease and deterioration of the teeth.

It is quite common for patients who have suffered from foot or hand injury to develop low back pain, neck pain and headache. One common manifestation of RSD in response to pain is muscle spasm, and motor dysfunction. This can be in the form of flexion deformity of the extremity, difficulty with walking, flexor withdrawal of the muscles of the extremity, and lumbar and cervical paraspinal spasm. As a result, the patient develops muscle tension headaches, as well as spread of the muscle spasm to the facial muscles with resultant stress on the temporomandibular joint (TMJ) and severe pain and spasm around the TMJ.

With passage of time, the same phenomenon results in chronic trauma to the TMJ as well as clinching of the teeth and trauma to the teeth. The patient develops severe pain in the distribution of trigeminal nerve (sensory nerve for the face) and develops moderate migrainous vascular headaches (trigeminal vascular headaches).

In later stages of RSD the immune system becomes disturbed, and the patient develops poor oral hygiene and dental deterioration.

Long-standing unilateral (one sided) spasm of cervical paraspinal muscles causes increased input of pain into the upper portion of the cervical spinal cord. As a result, a referred pain develops with resultant facial pain and secondary muscle spasm around the TMJ and the jaw. The same referred pain causes migraine headaches, TMJ pain and chronic stress on the teeth with dental deterioration.

H. Hooshmand, M.D.

Well that about sums it up. Do you have any problems with RSD spreading into your face and mouth? If you do and would like to share your experience with us or if you would like to share your comments on RSD and the Face and Teeth just add them to this post. As always I would love to hear from you!

Love,

Robyn

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0 recommendations Message 2 of 15 in Discussion

From: Merieca Sent: 3/2/2006 8:37 PM
This message has been deleted due to termination of membership.

Reply
Recommend Delete Message 3 of 15 in Discussion

From: countrygalinpain Sent: 3/2/2006 10:48 PM
I WAS DIAGNOSED WITH INFLAMATION OF TMJ ABOUT 6 MONTHS BEFORE I DEVELOPED RSD. THIS PAST JULY, MY EYE DOC TOLD ME IT HAD SPREAD TO MY EYES. THAT HAS TO BE THE WORST FOR ME. AS FAR AS PAIN GOES. THE RSD STARTED IN MY LEFT LEG AND IS NOW SPREADING TO MY RIGHT. I'M WANDERING WHERE DOES IT END.
HUGS,
CHRISTY

Reply
Recommend Delete Message 4 of 15 in Discussion

From: byrd45 Sent: 3/3/2006 8:58 AM
Hi Merieca,
I never even knew that they had a dentist like that! Thank you so much for posting about it! The booties sound so comforting mmm maybe I'll ask Santa next year lol. No really they look so comfy I would probably go to sleep except for being at the dentist. No, forget the sleeping part I hate the dentist! Hey, at least they are trying to make you at ease and more comfortable right. That is a plus. A massage now that is really something! Wow, they have thought of everything. Now if I just had dental insurance I think I would already be on the phone for an appointment. Well I book marked them anyhow who knows what the future will bring. They sound great!
Love,
Robyn

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Recommend Delete Message 5 of 15 in Discussion

From: byrd45 Sent: 3/3/2006 9:06 AM
Hi Christy,
I am so sorry it has spread to your eyes. That really does stink. Do you have the burning like me? Also I get real sensitive to light at times too. Has your vision been affected from it? I hope not. I know sometimes that can happen too. It is frustrating that it spreads like it does and I totally hear and understand your frustration. It is aggravating to not have control of what it does the only thing we can control is how we live. Keeping stress levels down help alot. I know it sounds like a simple thing but it has really helped me. It does slow the spread and I am so glad you come in and post and vent your frustrations the way you do because that is a real stress reliever. Keep on hanging in there and here's a hug for you. Love,
Robyn

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Recommend Delete Message 6 of 15 in Discussion

From: SIZZELIN_WIBBET3 Sent: 3/3/2006 5:13 PM
I HAVE BROKEN SEVERAL TEETH OFF DUE TO SPASMS THE RSD IS IN MY R.EAR ALSO,IT IS IN MY FACE I TOLD MY DR. WELL ONE OF THEM AND HE TOLD ME IT DOES NOT GO THERE WELL I NO IT IS I NO WHAT IT FEELS LIKE... AT ONE OF THE W.COMP
DR.S APPOINTMENTS I HAD A SPASMS AND BROKE A FRONT TOOTH OFF RIGHT IN FRONT OF HIM THE APPT. ENDDED THAT MOMENT. I DONT REMEMBER SEEING THAT METIONED IN THE PAPER WORK. THEY STILL SAAY THERE IS NOTHING WRONG WITH ME EVEN THOU MY WHOLE LIFE HAS BEEN NOT MUCH LIFE, ALOT OF PAIN AND HAS AFFECTED EVERY ONE IN MY FAMILY AND I KNOW MANY MORE ARE OUT THEIR JUST LIKE ME WAKE UP GO TO WORK AND POOOF THIS!!! SORRY I THINK THIS INSURANCE CO. NEEDS TO STAND UP AND TAKE RESPONSIBILITY IF IT WERE YOU OR I, WE WOULD HAVE ALL READY. IT WILL BE 4 YRS THIS YEAR I HURT WHY WOULD SOME ONE WANT TO BE THIS WAY FOR WHAT REASON? JUST VENTING SOME DIANA

Reply
Recommend Delete Message 7 of 15 in Discussion

From: SIZZELIN_WIBBET3 Sent: 3/3/2006 5:20 PM
I ALSO HAVE RSD IN R.UPPER SPREADING L.UPPER
SPREADING TO LOWER NOW DOES IT END? I HAVE HAD A SPINALCORD STIMULATOR PUT IN IT HAS HELP SOME NOTHING ELES THEY TRIED DID. I SEE A DR. EVERY 4-6 WEEKS THAT REALLY HELPS TO. MY BODY RESPONDS GOOD IN THE WARM POOLS WITH THE STIMULATOR ANY ONE ELES HAVE THIS RESPONSE? DIANA

 
 
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From: byrd45 Sent: 3/20/2006 8:23 AM

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From: byrd45 Sent: 3/4/2006 3:43 PM
Hi Diana,
Do you have an attorney yet? If you do ask if someone can go with to your next IME with you. That way you have a witness who can be there with pen and paper to take notes. Also look up under RSD in the news on the message boards there are at least one article about IME and what to expect and how to deal with them. IME exams stink I hate them myself. They purposely try to make you uncomfortable. Alot of them are paid by the insurance company to lie. The best thing to do is go and don't let them move any part of you in a way that will hurt you. They don't have the right to hurt you. They have the right to examine you but not injure you. I certainly understand your frustration and can relate to what you are saying.
Love,
Robyn

Reply
Recommend Delete Message 9 of 15 in Discussion

From: theMatrix777 Sent: 3/5/2006 12:58 PM
Diana:

You have every reason to vent. We all do from time to time. That's why this
list is for among other things. We all understand and have been there
ourselves.

My first pm dr said tremors are not caused by RSD as my hand was running
amok while I was sitting in his office with my hand on the table. He said he
had only seen 1 other person with rsd and tremors. I said, so what did you
do for her? He said , "nothing". I said, did they go away? He said, no. End
of conversation. We're wasting time, we're here to discuss your RSD, not
unrelated matters.

He also said it doesn't spread. So, I found another dr. The 1st one was an
anetheseologist that just wanted to operate. If he couldn't operated, he had
no other ideas. He wanted to do an SCS or pump or amputation since I'm late
stage 3 that's the only way I'll have a hand that works again. I wish on him
one day in my shoes. I'm sure treatment would improve tremendously!

Dr #2 is nice enough but he just writes the scripts I need and refers me to
other specialists as needed. He says RSD DOES NOT effect your memory. It's
just my age. I'm 55 and was sharp as a tack before this monster got ahold of
me. Now, some days I can't remember my telephone number. That's so
embarrassing. He says I have CRS. (can't remember sh**). That's actually
what he said. My husband was furious. He has seen my downward spiral and it
kills him because it bothers me so much.

But I agree, just as human beings, how can a person treat another person
with such lack of caring when they can see the pain we are in. Are all
doctors that jaded they just don't care about their patients anymore; just
making money and treating us like cattle. Trying to run as many as possible
in per day to make themselves rich, at our expense? What happened to
treating people like you want to be treated yourself? Did that go out of
style?

Hope you are having a low pain day,

Trudy

>From: "SIZZELIN_WIBBET3" <wibbet@sbcglobal.net>
>Reply-To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>Subject: Re: Weekly Discussion-RSD and the Face and Teeth
>Date: Fri, 3 Mar 2006 14:13:36 -0800
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> New Message on RSD Outreach
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> Weekly Discussion-RSD and the Face and Teeth
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> Recommend
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> Message 6 in Discussion
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> From:
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> I HAVE BROKEN SEVERAL TEETH OFF DUE TO SPASMS THE RSD IS IN
>MY R.EAR ALSO,IT IS IN MY FACE I TOLD MY DR. WELL ONE OF THEM AND HE TOLD
>ME IT DOES NOT GO THERE WELL I NO IT IS I NO WHAT IT FEELS LIKE... AT ONE
>OF THE W.COMP DR.S APPOINTMENTS I HAD A SPASMS AND BROKE A FRONT TOOTH OFF
>RIGHT IN FRONT OF HIM THE APPT. ENDDED THAT MOMENT. I DONT REMEMBER SEEING
>THAT METIONED IN THE PAPER WORK. THEY STILL SAAY THERE IS NOTHING WRONG
>WITH ME EVEN THOU MY WHOLE LIFE HAS BEEN NOT MUCH LIFE, ALOT OF PAIN AND
>HAS AFFECTED EVERY ONE IN MY FAMILY AND I KNOW MANY MORE ARE OUT THEIR JUST
>LIKE ME WAKE UP GO TO WORK AND POOOF THIS!!! SORRY I THINK THIS INSURANCE
>CO. NEEDS TO STAND UP AND TAKE RESPONSIBILITY IF IT WERE YOU OR I, WE WOULD
>HAVE ALL READY. IT WILL BE 4 YRS THIS YEAR I HURT WHY WOULD SOME ONE WANT
>TO BE THIS WAY FOR WHAT REASON? JUST VENTING SOME DIANA
>
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Recommend Delete Message 10 of 15 in Discussion

From: theMatrix777 Sent: 3/5/2006 1:13 PM
What does your dr do for you?

Hope your pain levels are low today,

Trudy