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-   -   i am just a mystery... (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/9807-am-mystery.html)

moonstar 12-27-2006 08:53 PM

i am just a mystery...
 
to almost every doctor i see...went today for further testing for my vertigo.. they can't find anything wrong as usual...all the blood work shows nothing,,the hearing tests show nothing..yet i still can't walk a straight line..am extremely dizzy,and vomiting..feels like i am on a boat as well as a rollercoaster at the same time..going back to the ent and the neurologist in 2 weeks..all i am doing is spending alot of $$$ and having the doctors look at me and say i know that something isn't right but don't know what it is??? at least they are not saying that i am making it up..this is real...as real as it gets!!!!!

jcherry 12-27-2006 09:27 PM

I wish I could help you but just wanted to let you know I was thinking of you and hope and Pray they find out what is causing the problem. Please keep me posted if you find out anything and if I talk to my Dr I'll see if she has any suggestions. What meds are you on? Have they considered maybe one of your meds making these things happen?

Hang in there..

Hugs,
Janet

debbiehub 12-27-2006 09:35 PM

HI
 
What doctors are you seeing- My PCP is Dr Seriritella in Bayshore- My pain mgt doctor is in Smithtown- Who is your neurologist?

Debbie

moonstar 12-27-2006 09:42 PM

thanks janet...i stop taking all my meds periodicly to clean out my system and to see if i go thru withdrawal...i am just in more pain and get a slight headache...i am on vicoden es, skelaxin,oxycontin,prozac,lyrica,xanex,crestor for high colesterol,and detrol la...seems like i spend most of my time in the bathroom and barely making it..have to go at least 20x's a day...i stopped taking the oxycontin for awhile so i would not get a build up and need a higher dosage(currently 20 mg 3x's a day) none of the meds take away the pain..i use lidoderm patches to cover the exposed nerves on my elbow,skelaxin for the muscle spasms..and mostly everything else for pain ,anxiety and depression.... damned if i do...damned if i don't... thanks for help.. linda

jcherry 12-27-2006 09:48 PM

Linda,

I was on almost every med that you listed at one time or another, just like so many others here were too. I didn't get good pain relief from any of them, and I finally let my Dr put me on Methadone and have had better pain relief that ever before. If it wasn't for the Methadone I still wouldn't be able to wear a sock or shoe on my RSD foot.

I hope they find the culprit soon because I know when you go through something like that knowing something has to be causing it but can't find it, it is so frustrating. How long have you been having the problems?

Good luck..

Janet

moonstar 12-27-2006 09:52 PM

hey deb.... my neurologist is dr. antos in hauppauge..i also see a orthopedist in levittown(he is the one who did my 3 surgeries to my elbow) my ent is in bayshore..and i was injured at work and the dept of labor refuses to have me see pain management...as i went to 2 and they treated me as if i was a piece of sh-- in the street and refused to see them again... my pcp is in brentwood... they all just look at me and shrug their shoulders...i am limited as to what drs i can see...due to worker's comp bullsh--.....tired of doing what i can do and getting nowhere..except worse...

moonstar 12-27-2006 10:58 PM

janet----- i was injured at work (a day i will never forget) march 28,1994 at 5:45pm....it has been 13 yrs of surgery,pain and fighting for my rights...i was diagnosed with the fibro and started having mini-strokes last year the vertigo just started dec1.. been such a long time..

jcherry 12-28-2006 11:04 AM

Linda,

I really hope they can figure something out soon. It seems like we don't ever just have one thing to deal with but a lot more than we should. I have talked to very few people that just have RSD and nothing else. I know a lot of people with RSD that also have fibromyalgia, TOS, and the list goes one. The pain from one of them is enough to deal with but then it is compounded by everything else.

I'll be thinking about you and if I come across something that might help you, I'll pass it your way.

Hugs,
Janet

Debby 12-28-2006 01:25 PM

Try a NUCCA or Atlas Orthogonal Chiro
 
Since MD's can't seem to find out what is causing your vertigo so badly I have provided 2 links to 2 types of chiropracters who just might be able to help you. Actually I have provided an extra link that has a video right on it's Home Page showing exactly pretty much what a NUCCA Chiro does to adjust the Atlas. Anything can cause the Atlas to not be completely level. And this bone is what our heads sit on. And when the Atlas is out of adjustment horrible vertigo can happen. There is a place on both of these websites where you can look for a doctor in your area. DO NOT be fooled. MOST chiro's do not have the slightest idea of how to adjust the Atlas. It takes a definite technique to do so. And any Chiro who says "sure I can adjust your Atlas" & cannot show you his certificate of having futhered their education by going on to school to become a NUCCA or an Atlas-Orthogonal Chiroprater then they absolutely CAN NOT adjust the Atlas. To find out if they have the credentials just ask them if they can show you them. They cannot cure RSD, but they sure can help with lots of other problems. They will not touch you without taking X-rays. And they defintely do not take hold of your head & twist it abruptly or by popping or snapping it. In fact after a few treatments by one of these types of chiro's you will NEVER go back to the other type again ever. I have been treated by both types. They both did for me what the other one did only they use a bit different techniques. But they both adjust the Atals, the top bone to our spines upon which our head sit.
They would be worth a try if you can find one near enough to you since the other doctors you have been seeing are not helping at all. Vertigo is horrible.

The frist link is to the NUCCA website:
http://www.nucca.com/default.asp
The 2nd one is to the website with the video of a NUCCA in action:
http://www.nucca.org/
This 3rd one is too the Atlas-Orthogonal
http://www.atlasorthogonality.com/introduction.htm

RSD_Angel 12-28-2006 07:00 PM

Moonstar!!

OMG>. you sound just like i did for the past month and 1/2!! Since the begining of November, i have been having bad vertigo spells that would last weeks and then when it went back to normal , something like moving my head just right or looking at flashin lights would trip it off. I would hold my head at an angle and not move it and i was able to walk around the house to a point that i could get to the bath room and something to drink. I have Meniers dz and the vertigo was differrent from my menieres vertigo.. and i told that to my primary doc.. just gave me and antibiotic and said this should fix it. well nope.. didnt at all.. i have been poping meclizine like its freekin candy in hopes that it might help. So my pcp sent me to my ENT.. he thought it was Benign Postional Vertigo and gave me positions to do when it happens.. well.. he just didnt get it that it doesnt go away when it hits.. so my PCP sent me to a nurologist and he did a CT and said maybe its migraine related.. although i never had head aches?? But he doesnt know what it and said good luck and if it gets worse then maybe he could figure it out.. hahah thanks right.. so i go back to my PCP and siad listen, can it be sugar or my thyroid being out of wack again, and so he did bld work... I had a high sugar level and it was in my urine also.. sooo he did more indepth and figured out that i dont have sugar (well not as of yet) that my thyroid was way out of wack and the one main level that they normally ck didnt catch it and that being out of wack could cause my veritgo and the "different" feeling i was getting with them. I thought i had a brain tumor or somthing bc no doc would believe me and just told me that i had to live with it , and deal with them when they hit. Thank god i dont work or else i wouldnt ahve a job right now!! At least i got my PCP to listen and i have been on the increased dose of my thyroid meds adn , knock on wood.. havnet had a spell yet!!! I sooo know where you are comming from... But something else that helped me to get the attacks to stop for a little bit and i think over all helped me get so i could drive and then coudl feel the attacks come on.. was going to a Chiropracter that deals with Vertigo.. they do manipulations in the neck and puts every thing back in alignment and it did wonders.. i went in with having vertigo and walked out with out one@!! it lasted about a day.. and kept on getting longer.. so something else you might want to try.

Have your doc do a FULL thyroid panel. TSH , T3, T4, and a free T4!! thats what caught mine and not even my neurolgist caught that!!

Hope i have helped and let me know if I can help ya anymore!!

:)

Amber


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