Undiagnosed Symptoms Community
So many symptoms!
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So many symptoms!

Hello. I am 25 years old, female and have so many symptoms and no doctor has yet to diagnos me. I am curious if anyone can help me out here. It all started about two years ago with these tiny little bumps showing up on my arms that where itchy, and after being out in the sun during the summer. My PCP at the time just gave me some steroid cream to get rid of them and wasn't really sure what it was. After that I had muscle pain in my legs and joints, so bad it hurt going up stairs or doing anything active. This would come and go but never lasted too long. Over the past two years i've experienced night sweats, shortness of breath, nausea, muscle weakness the worst in my legs, general weakness all over, extremley tired but cant seem to sleep well at night or ever feel rested. The past few months I have felt my worst here are the symptoms I have been having. Muscle twitching/spasms all over-mostly in legs, leg muscles are sore, tight feeling sometimes have a burning sensation. headaches, light sensitive, no appetie, horse voice, irritablitity, anxiety, random heart fluttering, dizziness, light headed, dry mouth, nauseas, stiff legs and hips, pain in hips and lower back,. itchy red bumps that show up randomly and rashes. The left side of my body is also weaker than the right. I have scoliosis and have had endometriosis.
16 Comments
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Avatar_m_tn
have you consulted a neurologist?
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Avatar_f_tn
yes he did a bunch of tests and said everything was fine.
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4173379_tn?1355360151
You could benefit from getting a dr who really understands thyroid issues...maybe you've had that tested but really worth researching this for yourself as drs have the tendency to only look at one number, when there are others that are much more important when it comes to measuring thyroid function.

You can research underactive thyroid, which is hypothyroidism, and compare your symptoms.
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Avatar_f_tn
thank you I will look that up, I have had that looked at by two PCP's.
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4173379_tn?1355360151
So had I...they never went past the TSH...which is a big error on their part. The reference ranges they use to "diagnose" thyroid issues are too broad...10 years ago it was recommended the medical community change their lab references so as to make sure the patients that were having thyroid damage for various reasons are actually getting diagnosed. The reference range many labs use is too broad...not sensitive enough to catch the problem early enough.

So, if you get your lab results, if they have not done a free T3 and free T4 test, and have only done a TSH, then they could be missing something very important, if you fall within the out-dated reference range.

Take care. There are not many drs who are willing to be openminded about the the new recommendations or looking beyond the TSH. It is a fight, let me tell you. Naturepath is my next step.
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361311_tn?1372016002
Hi summergirl12, I have had most of your symptoms starting two years ago. Have you been tested for EBV and or CMV? I believe that EBV is the cause of what is going on with me. Unfortunately you will have to investigate on your own, push doctors for testing and not have much support. Hopefully your support is different from mine but I have been told and even yelled at that it is all in my head, to get over it, that it's stress, that I am making it up. That is why it is so important to find other like yourself that can give you support.

The problem I am discovering with EBV and CMV that mainstream doctors don't really understand or recognize that either of these two conditions can be a chronic issue. It really has destroyed my life and I am struggling to find answers. I want my life back. So, in your investigation what is wrong with you I highly suggest getting tested.
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Avatar_f_tn
I have been tested for mono, I don't think that is what is going on with me but I will look into both. It is so hard to explain becuase every day my symptoms are different. Lately I have had a lot of muscle spasms whenever I am not standing my legs are going crazy with twitching/spasms. Also lots of headaches, tiredness, muscle and joint pain and weakness.
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Avatar_f_tn
I have been tested for mono, I don't think that is what is going on with me but I will look into both. It is so hard to explain becuase every day my symptoms are different. Lately I have had a lot of muscle spasms whenever I am not standing my legs are going crazy with twitching/spasms. Also lots of headaches, tiredness, muscle and joint pain and weakness.
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4173379_tn?1355360151
Again...all symptoms of thyroid malfunction...if you would like to see a complete list you can punch in symptoms for hypothryoidism. There is also hyperthyroidism, and Hashimoto's which is a combination of hyper and hypo, fluctuating back and forth. Bottom line, thyroid is the culprit in all these disorders that affect the hormones made by the adrenals. You can see for yourself if it fits for you..."Stop the thyroid madness" is a good place to start.

The twitching spasms in legs is/could be Restless Leg Syndrome (also symptom of thyroid. I have this syndrome for many years, as does my brother. He moves so much especially at night, I have every symptom you mentioned, in combinations and various severity.

Cheerz, C
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Avatar_f_tn
Thank you so much for all of the information, I will continue to look into this. I read so much online! The symptoms I have are symptoms of so many things. I will mention this to my doctor at my next appointment and see what she thinks. Hopefully we can get something figured out!
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4173379_tn?1355360151
I know the feeling about that! And every time you go to dr with a new thing you want looked at they roll their eyes and ask what have you been reading about now?! Maybe not out loud, but I can just imagine. A dr actually told me that reading on the internet about something is just a bunch of nay-sayers...

Well, I learned a lot more about my problem there than I ever did from a dr!

I had been told for so many years that my thyroid (just one example) was "fine" and that I was "in range". NOT TRUE! Thyroid testing is one of the biggest mistakes ever made to millions of people. The wrong test and the wrong reference ranges means that millions are undiagnosed and misdiagnosed and mis-treated even if they are found to have malfunctioning thyroid.

So, knowledge is power, and it can mean the difference, which is why we come here looking for people to help, eh? Sometimes it clicks, sometimes it doesn't, but somewhere along the way we can all help someone someday, maybe.

Keep in touch if you find out anything. Good to know how things work out, or don't.

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Avatar_f_tn
I will let you know how things work out. Thanks for all of the advice! I continue to read on the internet and will keep everything in mind for my next appointment.
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Avatar_f_tn
I have had some blood work done and found out my cardiolipin antibodies test was slightly abnormal, I am not too sure what that could mean. Also had autonomic testing done and still waiting on results.
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Avatar_f_tn
Have you considered common old garden anxiety/depression? Most of your symptoms can be due to depression. I suffered for years with anxiety and it is amazing how much it can affect you physically. If your investigations with your doctor come to nothing then consider the best self treatment I have found. Exercise, never sleep during the day, exercise more, accept all social invitations, do things for others, and if life is getting unbearable (affecting sleeping, eating, relationships, job) then consider medication. They are pretty good these days.
Take care and good wishes for the new year.
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4196580_tn?1356874955
maybe MS
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Avatar_f_tn
I agree with panda.  I have Hashimotos and it took a internal medicine doc to diagnose it.  Most GP's won't run more than a TSH. A good endocrine doctor will run the right tests.  Apparently, my type of thyroid problem required a blood test of my "thyroid ANTIBODIES".  Its an autoimmune disease which means the thyroid is attacking itself.  This blood test can diagnose Hashimotos before it shows up on TSH.  hopefully this helps!
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