frustrating search

• By tditto
• Posted December 18, 2008 at 1:10 pm
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Dragonfly -

I have only read this one post - I'm wondering if scleroderma has even been discussed. I know Reynaud's syndrome is usually part of it. I will look back for more info but can you also tell me more about your symptoms?

God bless you.

t

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• By dragonfly44
• Posted December 19, 2008 at 8:58 pm
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Hi tditto
Firts i have myoclonos, specially in hands it is more notorius.....but i fell that how my muscles jump all over my body jump also....hiperhidrosis,in anckles and hands specially, when the muscles retract the contraction, the color of skin take a one purple color that maintein.......also many times can move the fingers or food, like paralized...that can during minutes or hours........even that the cardiologist told me that may be....the med that give to higth blood pressure.....may be cause that color of skin and if not raynaud syndrome...all may be......my muscles twisted, caused pain, i can sleep at nigth......if canot take med.....muscular relaxing.........EMG say :Myoquimia, report of doc ; Diagnosis Stiff Man , may be also.....she dont know who beleive......my husband insist in that i am recovering very well...specially with lyrica...that caused me again almost an cardiac infart....i have more taquicardiac....pulse normally up of 105 by minute......i am allergic, asmatic, an i have many illness relative that......dont have lupus, reuma, but i am an disorder of insuline production...over decharge of insuline...hight level, my father was diabetic.....insted me i treated like diabetic tipe 1 for a months many years ago.......insuline included....nobody understand that....my levels of sugar in blood all over 400....but have also hipo levels.......4 or 5 times with levels down of 20.....coma...i know.......now are more less normal.....rare...but .......my hands are usually so cold...very cold.....and knuckle color more purple that the rest of hand.....almost black....now the pain are in all arm.........i take gabapentin,fluoretin,lyrica,diazepan,almost all antiepilectic drugs, and dolotensodox,and not response, insted my husband insist in aswer by me to doc and try both to convince me and say them that i am better...but not...specially lyrica....vomits....and many complications....include my heart....are days that the pain is too much...
What do you think ?
EG is normal and RM is normal.6 years ago i was a epileptic attack without explanation by any test.
Andrea

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• By itzykitty
• Posted December 28, 2008 at 8:10 am
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Andrea:
Have they checked you ferritin levels? I was having some of the same symptoms with purple in my toes and hands. I had severe bruising. My heart rate was up to 149. I take mirapex and topamax, I have fibromyalgia, CHF, COPD, have had strokes with no warning and I have had my feet lock up with no reason for hours with severe pain so bad I would scream out. My mom and my friend would try to help with no way to solve it. They would try everything. Nothing worked. Pain killers did not work. Dr's ran blood work to show hemoglobin and it was fine. Then blood work to see what else could be done . It was still a mystery. My diagnosis for the original mirapex was restless leg syndrome. Which I still have. But I still was having the pain. Had an eeg...turned out normal. Had another blood work. They then found out I was low in ferritin. I am a 9 and I am supposed to be a 15-300. At 8.5 it is risky! So now I am taking iron supplements three times a day. Doctor ordered it. I am tired all the time, but so far the legs and feet have stopped bruising. They are still paining some. I hope that my iron is getting a bit better as I do not get the usual side affect from it. (constipation) I get the opposite! YAY (not fun) Andrea I hope that this helps at least a little.

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• By dragonfly44
• Posted December 31, 2008 at 2:52 pm
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Hi Itzykitty
Never Check it......one thing extrange are my levels soo higth in 19 from Hemoglobine......but ferritin levels really i dont know, I supposed that with all higth hemoglobine I am more Fe that I woman is specially too higth ...but thanks I will ask my doc for take that examen all can make a difference when You are walking in empty road ......My diagnosis are she dont......She is thinking i suppose ?....my doc is complety lost, that is real .....and me still I have pains and my shoulder and rigth arm jumping the musculs.....for that I looking extrange person with tics...I dont know was they thougth when note that..is really notorius......also feeling the jumpings ¨(myoclonus¨) on my legs...but using pants, there is not more notorius.....the problem are the pain and the sensation of had have more phisical exercises that caused me feeling tired.....only solution that give are more sleep......all time I am rest.....today I awake at 11 am!!......and them all begin again.....the simtopms dont go far away....only sleep with me....may be not...but for me is too much sleep.....I dont want sleep too much....
Affortunaly I am not constipated.....also one symtom relase to me....My heart condition like It probably better.....with too much sleep I dont know.......
I hope too you the same......Best wishes to You and Family...and thanks....
Regards
Andrea.

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• By Jlphillips57
• Posted February 24, 2009 at 2:42 pm
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Hi Andrea, my name is Jim,
I cannot tell you that I know what you are going through, because I don't. I can tell you how sorry I am for you. I have many problems myself, but not as bad as you. It sounds like you may have to contact Johns Hopkins Hospital and tell them what you are going through and they might bring you to the United States for thorough testing. To me, it sounds like you are having too many side effects to the drugs you are taking and they are giving you more drugs to hide the side effects. Sounds like one big circle of pain, drugs, reactions, pain, drugs, reactions and it keeps going and going with no end. I think you may have to come To the USA to get the proper treatment. Germany and Switzerland are also great places to go. They don't have to go along with FDA to give you medicine. They can do things we can not. Just have faith and pray. I will pray with you and for you. I know, it's no fun to be in pain every day of your life. I wish you the very best. You can always write me if you just want to talk because with pain comes depression and with depression comes more pain and suffering. I belong to a pain management center that helps me. Maybe there is one someplace that can help you. Good luck Andrea.

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• By dragonfly44
• Posted February 24, 2009 at 4:22 pm
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JIM
ITS REALLY SAD BE SICK, HAVE PAINS, BE DONT UNDERSTANDING BY OTHERS, MANY OF THEM MAY BE DONT BELIEVE YOU.....,MORE OF US ARE IN SPIQUIATRIC TREATMENT FOR WE ARE RARE DECEASES THAT ONLY A FEW DOCTORS ALL OVER THE WORLD KNOWS.....OR UNDERSTAND.......MANY OF THEM ALSO DONT KNOW THE NAMES OR WHAT ARE THE CONSECUENCES OF THAT ILLS....ONES DAYS FOR ME ARE GOODS BUT ANOTHERS ARE BAD, REALLY BAD, THE WORSE FOR ME ARE CANT SLEEP.......ALL DAY I AM IRRITAITED...FOR ONE FRUSTAITED SEARCH FOR ANYBODY WHO CAN HELP YOU....YOU ARE LUCKY, BECAUSE YOU KNOW EXACTLY THAT YOU HAVE, AND THE CONSECUENCES....IN MY CASE, SOMETHING CALLED DERIVATED FROM ISAAC'S SYNDROME, THE PROGNOSIS ARE INCIERTE....HOW CAN WILL WAIT FOR THAT...NOBODY KNOWS BECAUSE ALL OF US ARE DIFFERENTS SYMPTOMS......AND IS VERY DIFFICULTY DIAGNOSIS, ALSO THE PRINCIPAL TEST THAT WE ARE FOR THAT ONLY HAVE ONE 40% OF CERTENLY......AND MAKE IT ONLY IN 3 COUNTRYS.....REALLY I DONT KNOW WHO WILL BE MY FUTURE......IF MAY BE WALKING...OR NOT.......ALMOST TODAY, I AM BE SO GOOD, ALMOST WITHOUT PAINS....BUT NOW ALL BEGIN AGAIN......I LIVING WITH MY DAUGTHER , MY BABY, ALSO SHE MAKE THAT ME CANT GIVE UP......AND WAIT....WHAT....I DONT KNOW......
I PRAY FOR YOU TOO, YOU ARE IN MY CHANGE OF PRAYING FOR TO THE CHAPI VIRGEN , VERY MIRACLESS, I HOPE YOU THAT ALL OVER THE DAYS KNOWS MORE OF US, AND WILL TAKE WITH MUCH OF THEM AND WILL SAW INSIDE OURS HEARTS FULL OF PAIN, SAD, AND ANOTHER CONFLICTS. SURELY WHEN YOU READED HIS HISTORYS OF LIFES YOU WILL FEEL BETTER, AND MAY BE CAN FEEL THAT YOUR SUFFER IT IS NOT THAN HORRIBLE THAN ANOTHERS.....FOR ME BE SICK AND ALONE ARE THE WORSE.....BUT HERE YOU WILL FIND VERY VERY SAD CASES.........AND WILL CAN FIND MANY FRIENDS ALSO.
KIND REGARDS
ANDREA

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• By RobynHerself
• Posted May 17, 2009 at 12:43 am
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Hi Dragonfly,
Most of the pains and troubles you have can be caused by a slow thyroid. Fibromyalgia is probably caused by a slow thyroid. Ask your doctor to check and make sure you have a healthy thyroid hormone level. Ask to be tested for T3 and T4 thyroid hormones.

I have many of the symptoms you describe and when my thyroid is well treated, most of the other problems go away.

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• By dragonfly44
• Posted May 17, 2009 at 1:00 pm
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Thanks robiynherself
But i don't have any problem with my thyrodes. Never i had frybro....it was a mistake. my tyroids levels are perfects.
The symptoms will be look similars but it is not the same. In my case is an autoinmune trouble.
I take many, and many more, test for tyroid, but nothing anormal. only mistakes....
Thanks and God Bless you

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• By BravesLover
• Posted July 2, 2009 at 7:59 am
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Dragonfly, I went through much of the same things you are going through. I went from July of 2006 until Nov. of 2007 before I got a diagnosis of Stiff Person Syndrome. They can do this through a blood test that checks for antigad antibodies. I hope you have found some relief by now. I know what you mean about people not believing you. The first Dr. I went to told me it was just stress and put me on anti anxiety drugs which of course did nothing at all. Good Luck and God Bless You. Braveslover

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