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Old 01-05-2012, 04:31 PM   #16
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Re: Undiagnosed auto-immune

Hello to you and hope New Year brings you better news!

I am not a DR and dont want to play one, but just based on my own experience, on my own research and experience of people I know and love.

I wouldn't worry about muscle burning after mild exercise: if you would exercise regularly, this muscle burning sensation would disappear. It happens in people whose muscles not worked out well.

Stubbing pain in your lower back in kidney area could be due to small stone. I had kidney stone attack twice in my life, so I done a lot of research on this matter. My husband has some sand/ small stones and experiences once in a while this stubbing short time pain as well. Simple ultrasound will revile if you have any problems there.

One thing I can recommend for sure: living near NYC, we exposed to the best of the best and its a shame not to use this opportunity. I travel to NYC myself after having very sad experiences locally. If you know you are not well, don't let anyone telling you are OK or it's in your head. When they say this to a patient, they say that they dont have enough knowledge and experience, so leave them and knock to another door until you get your answers.

All the best to you,
Moldova

 
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Old 01-05-2012, 08:25 PM   #17
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Re: Undiagnosed auto-immune

Wow, I know how frustrated you must be. Do you have any other symptoms that are odd
? What about your skin, any weird sores? Does sunlight make you feel ill? To catch lupus you almost have to have a blood test every month for several months, at least that's what my Dr. told me. You can be very ill from autoimmune disease and your bloodwork still can look normal.

 
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Old 01-06-2012, 05:54 AM   #18
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Re: Undiagnosed auto-immune

Hi Missy,

I dont have odd things, just "normal" thing which characterizes disease. Like lymph nodules enlarged on my lungs and fluid due to RA and Lupus, damaged heart due to same thing, many different skin conditions like Lichen Planus, 2 types dermatitis, Psoriasis. I do have very typical for Lupus (and usually this is the first signs of Lupus) red little "stars", flat too, on the inside palms of my hands and the bridge of my nose.
I dont even start talking about damages done to each joint/ligament/muscles/tendons/cartridge. This is combination of OA (bones) and other conditions I live with.

I dont get sick from sun; many people have reaction/sun poison and this is just how their bodies react to the sun, nothing to do with the disease. I have very fair skin and burn fast if I am not careful. Had many times burned myself badly when young and paid for it with 2 skin cancers by now.
I was tested for RA and one day my RA called me to say bad news saying that I also tested positive for Lupus and my numbers too high to ignore it, and that I must start treatments right the way.

Reading yours and some other people's posts, I sympathize with you. I went through many RA with big names who dismissed me. I have damaged spinal cord after spinal surgeries, live in severe pain and they all told me that I have my symptoms b/c I am chronic pain patient. Despite the fact that I was diagnosed with Juvenile RA at age 12!!! One DR told me this was than, now I don't have it! He never ordered blood work, would you believe it? And yes, they were young too, this is to your statement about old versus young doctors.
Personally, I love older doctors, they more conservative, they are the ones who are not "knife happy" and send you for surgery when it can be avoided. Young, ambitions dr could kill my diabetic husband, who insisted he needs surgery. Smart and careful me, took him for second and third opinion to more experienced doctors and guess what? He never needed any surgery. I went through same thing, they told me I need open heart surgery 14 years ago after I had cauterization. I left the hospital, went to see someone else at NYC; I never needed any bypass surgery, my problem cant be fix with surgery!

Why I tell you all this? Doesn't matter what age of the dr is, you look for one who has excellent back ground, great schooling (thank God for Internet), experience at good hospitals. Unfortunately many good doctors do not participate in any insurances or some of them, but I would rather go to him/her, pay out of my pocket just to hear his independent opinion. Don't stop searching if you know something is wrong; don't get discouraged just because someone treated you poorly. You will find a good doctor and you will get to the root of the problem, I promise you dear heart!

Finally, when I found a great team of Doctors who work together on my health issues although they all from different fields, I know what good and knowledgeable doctors means. I took time and wrote to each of my previous RA Doctors who dismissed me, what my situation is now, my diagnoses. I told them in these letters that I take my time to write only for one reason: for the sake of other sufferers who come to them seeking help. That maybe after these letters they will be more careful in dismissing people or maybe they need more schooling to know more about the disease. I really did!!! I hope other people will benefit from it.

OK, all the best to you once again.
Moldova

 
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Old 01-06-2012, 08:59 AM   #19
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Re: Undiagnosed auto-immune

I am new here, so I think I posted to the wrong thread. I was posting an answer to Leabeans question. Thank you for posting a reply though Moldova. You and I have a lot in common. I am very fortunate to have a rheumatologist near my home that is one of the top guys on the east coast. I've been going to him literally every 4 weeks for 8 yrs. I have Bechets with brain involvement and have been seriously ill about 12 years and had the classic skins sores at age 11. I was also diagnosed with Lupus(lucky me) Anyway I actually came to the site because I am 100% disabled from severe neuropathy right now and was looking for help. I saw the autoimmune board because I remember how it felt to not have a DX and my heart went out to everybody.

 
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Old 01-06-2012, 10:45 AM   #20
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Re: Undiagnosed auto-immune

yea it's really rough not getting a diagnosis. I had to schedule an appointment with a rheumatologist about an hour away, a month and a half in advance. I'm hoping this doctor helps me but, Two of my doctors diagnosed me with Lupus, but one of them doesn't want to start me on plaquenil yet she wants to wait to see what the new rheumatologist says. Honestly, it's difficult not giving up altogether. Especially coming close to a definitive diagnosis and then getting told you need a third opinion. I thought one would be enough let alone two but, I guess I was wrong. The city does have the best doctors that's for sure but, I'm hoping they can give me meds for how I am feeling. I am tired of being tired all the time, and sick of being sick. I'm sure we can all pretty much agree on that. It's hard to for anyone to really empathize with me and understand what I am going through. Sometimes I feel like my friends and family think I'm just being a big baby about my health but, I'm not, I'm scared of it getting worse. Anyway I hope it works out for you all.

 
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Old 01-06-2012, 10:56 AM   #21
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Re: Undiagnosed auto-immune

I usually post on the spinal cord disorder board, but I have an odd symptom that I have told to my doctors over the years and they pretty much ignore me because all of the test and bloodwork usually come up with a diagnosis
I have a lot lot of nerve damage which causes a lot weird sensations, crawling things all over my body, numbness, tingling spastisity , this one is one I have not read about on these boards, sometimes I get a heat sensation in and around my ears ,today it is just the right ear, it feels like someone is holding a bic lighter next to my ear , sometimes it last from 30 minutes to 3 hours , I eat spicy foods I get a stabbing pain in my tongue with some numbness and throbbing, ever since I was 15 years old I have had a crawling feeling on my scalp , I am now 59 years old , please has anybody heard of this, thanks

 
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Old 01-06-2012, 02:43 PM   #22
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Re: Undiagnosed auto-immune

Quote:
Originally Posted by LeaBeans View Post
yea it's really rough not getting a diagnosis. I had to schedule an appointment with a rheumatologist about an hour away, a month and a half in advance. I'm hoping this doctor helps me but, Two of my doctors diagnosed me with Lupus, but one of them doesn't want to start me on plaquenil yet she wants to wait to see what the new rheumatologist says. Honestly, it's difficult not giving up altogether. Especially coming close to a definitive diagnosis and then getting told you need a third opinion. I thought one would be enough let alone two but, I guess I was wrong. The city does have the best doctors that's for sure but, I'm hoping they can give me meds for how I am feeling. I am tired of being tired all the time, and sick of being sick. I'm sure we can all pretty much agree on that. It's hard to for anyone to really empathize with me and understand what I am going through. Sometimes I feel like my friends and family think I'm just being a big baby about my health but, I'm not, I'm scared of it getting worse. Anyway I hope it works out for you all.
I feel the greatest compassion for you. It is so hard to know you are really sick and have no medical validation. Especially with autoimmune disease because you don't "look sick". I knew by my mid 20's I had to have some sort of illness. I had mouth, skin and genital sores. I was utterly exhausted. Sunlight made me sicker. Migraines , abdominal pain, sore organs, joint pain. ankle and wrist pain. I would have anaphylaxis symptoms and swell up. Every doctor I went to told me it was all in my head or I had mono. By age 32 I really wanted to give up. I could barely take care of our 4 kids. Finally I was in an ER and the Doc asked me if I had been tested for autoimmune diseases and I said yes, but they were always negative. He said he was certain I had a autoimmune disease and told me to go to a rheumatologist. I went to that appt. and he diagnosed me that day! Just by my symptoms! My rheumie told me that I was in the tail end of the disease and probably would have died soon. So you can be very ill and have no idea, so don't give up!

 
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Old 01-07-2012, 10:11 AM   #23
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Re: Undiagnosed auto-immune

Missy, LeaBEans,

I hear you! I know how hard this is, not only to be exhausted all the time and in so much pain, but also to run from Dr to a Dr unless you are the lucky one and found a good and knowledgeable Dr from the first time.

I wish you to finally get to the root of it, get help ASAP and to live new year with less health issues... God Bless you!

Missy,
I do have neuropathy as well; I still can walk on most days, but very little, with a lot of pain and for a very short time. I was on Neurontin, Keppra, LUrica, you name it, but it really didn't help much, and side effects were worse than symptoms sometimes so I quit taking them.
Sorry for all what you all going through. I feel very bad and hope I could help you all, dear people.

Moldova

 
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Old 05-22-2012, 05:36 PM   #24
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Smile Re: Undiagnosed auto-immune

Thinking of you. My sister has an undiagnosed auto-immune disease and I was researching her symptoms and found your post. You are not crazy. You are a strong woman. I wish modern medicine has caught up with you. Take one day at a time. Know that there are people out there that believe and know you are going through more than they can handle. Don't give up hope. You are loved.

 
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Old 02-06-2013, 04:48 PM   #25
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Re: Undiagnosed auto-immune

Hi, I'm sorry you're having such a difficult time. I have a number of those symptoms in addition to a few more. Have you been tested to see if you're HLA B27 positive? If not, you may want to be tested. Blessings to you.

 
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Old 02-06-2013, 07:38 PM   #26
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Re: Undiagnosed auto-immune

capatga:
Have you ever been tested for Lyme disease. If you have it, it would be chronic and old lyme. There is a special lab in california that is the best lab to test for lyme. It is called Igenix. Just a thought. LaLa

 
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Old 02-07-2013, 04:36 AM   #27
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Re: Undiagnosed auto-immune

It's been a while since I posted {over a year} but I just wanted to report that although I never got any answers, I made major lifestyle changes and am now almost 100% free of every single symptom I used to suffer from! I am a firm believer that my symptoms are/were allergy or environmentally related so I have been taking Zyrtec daily for a year. I have not had one breakout of hives, no more foggy brain, no more fatigue etc etc etc! The biggest change I have made is my DIET. I have been eating clean for a year now and I truly believe this has helped cure me. I have cut out all processed foods, sugar and most alcohol. Whatever it is out there that was "poisoning" my body is now gone and I am a new person! I have all of my energy back without the help of stimulants and workout 5-6 days a week. Good luck to all of you xoxo

 
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Old 02-07-2013, 05:07 AM   #28
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Re: Undiagnosed auto-immune

To all of you who have autoimmune symptoms, struggling to get diagnosed: There is a new test called AVISE SLE that is a more sensitive blood test than the standard ANA test for lupus. You can research it online and request the test from your Dr, who may have to order the kit from the manufacturer. Also, if you have muscle pain, burning, weakness, make sure you get CK, a muscle enzyme checked. As previously mentioned, Smith antibody, anti-DNA DS antibody, anti RNP, anti ribosomal, SSA, SSB, RA factor are all good tests, as well as anti-thyroid antibodies. Complement levels are often low in lupus. It is best to be tested during a flare of your symtpoms. I had symptoms of lupus for 10 years before my ANA was positive, and then only at 1:40. So I wouldn't dismiss that when you have so many symptoms suggestive of it. Some Drs will treat you even without a definitive diagnosis if they suspect an autoimmune disease, so I would discuss that possibility with your Drs that seem to care and realize something is wrong.

 
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Old 02-07-2013, 08:28 AM   #29
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Re: Undiagnosed auto-immune

Quote:
Originally Posted by bella8286 View Post
It's been a while since I posted {over a year} but I just wanted to report that although I never got any answers, I made major lifestyle changes and am now almost 100% free of every single symptom I used to suffer from! I am a firm believer that my symptoms are/were allergy or environmentally related so I have been taking Zyrtec daily for a year. I have not had one breakout of hives, no more foggy brain, no more fatigue etc etc etc! The biggest change I have made is my DIET. I have been eating clean for a year now and I truly believe this has helped cure me. I have cut out all processed foods, sugar and most alcohol. Whatever it is out there that was "poisoning" my body is now gone and I am a new person! I have all of my energy back without the help of stimulants and workout 5-6 days a week. Good luck to all of you xoxo
Dear Bella8286,
I am so proud of you, so very happy; just by changing your diet and life style you are a healthy person now. I am a strong believer in active life style in choosing right what we put in our mouth. Good for you! You should share your experience with others now who may follow your foot steps and get healthy.
Ancient people, thousands years ago, always taught that without healthy guts - no healthy body. To get guts healthy, means eat right. As simple as that. They have now so much information on bad foods, on what we should avoid we just have to read and learn...

I am glad that all your symptoms were not b/c of any serious health issues. Unfortunately for so many of us who have serious health conditions, diet and active life is not the answer. Never hurts to live right and do the right things (I believe everyone should follow healthy life style) but in many cases this is not an answer.
You keep up with good job and enjoy your healthy life!

Moldova

 
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Old 02-07-2013, 09:14 PM   #30
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Re: Undiagnosed auto-immune

Quote:
Originally Posted by lala52 View Post
capatga:
Have you ever been tested for Lyme disease. If you have it, it would be chronic and old lyme. There is a special lab in california that is the best lab to test for lyme. It is called Igenix. Just a thought. LaLa
No I have not been tested , my doctors don't really know what I have, I've had veep, emg,ct scans MRI with and without contrast, balance test , I do have scarring from some mini-strokes ........they are not sure all of the scarring is from strokes because they are old , my doc won't test me for Lyme, I'm not a hiker or been on a vacation in the woods so maybe that's why they won't test me, I have very extensive nerve damage from cervical and lumbar stenosis , myclonus jerking ,tremors ,numbness below the waist ,peripheral neuropathy
tinnitus ,vertigo , splasticity ,restless leg,double vision,anxiety,depression

 
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