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1127960 tn?1264563492
16year old, cannot walk stairs...MS? Peripheral Neuropathy? suggestions?
· I'm 16. July 2009, my body went extremely haywire.
· I’ve always been very sensitive to cold, but my EXTREME SENSITIVITY TO COLD intensified.
· When i stand, my LEGS TURN DARK PURPLE, red, blue and white....looking like lava lamps!
· I show signs of MUSCLE WASTING, and my fulltime gym excuse says something about POLYMYOSITIS/or MYOPATHY. I could only stand for short periods of time without leaning on something. I started having trouble getting up stairs, and when i did walk stairs, or even sit with my legs not elevated, i would receive LIGHTNING BOLT PAINS down my legs (especially in the calf).
· At the same time, ALL OF MY HAIR WAS FALLING OUT, but the symptoms as a conglomerate didn’t seem to connect. I now CANNOT WALK UP STAIRS, and have to crawl them if i must.
· My feet and hands TINGLE and go NUMB often. so does my jaw, eye, and neck. My hands often SHAKE.  I have LOSS OF SENSATION throughout the entire left side of my body.I get MUSCLE SPASMS in my thighs ans sometimes my legs.
· The CHANGE IN MY GAIT since July has been astonishing; my right knee and foot turn inward and my BALANCE IS NOT AT ALL WELL according to a physical therapist.
· My CIRCULATION IS TERRIBLE and i must wear stockings everyday.
· Some pains i have are RELIEVED BY PRESSURE.
· I have SEVERE JOINT PAIN and stiffness, along with slight swelling.
· i’ve had VISION CHANGES since the onset of my symptoms.
· i’ve seen a neurologist, he got me a scan of my lower spine only, looking for injuries to the spine (a girl who has never played a sport.).
When i saw my regular doctor, i told him of an article i read about PERIPHERAL NEUROPATHY that SOUNDS EXACTLY LIKE ME, i hadn’t brought up to the neurologists. He said that he didn’t know why the neurologist didn’t bring that up, and that he sent me over there to find out what he was suspicious of.
Also, MY SYMPTOMS MATCH MULTIPLE SCLEROSIS.  My symptoms match Lupus perfectly, but the blood tests have shown not so, same with rheumatoid arthritis. Could anyone help? Any experiences?
Thank you!
-Katlyn Constance
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Avatar universal
Have they checked your thyroid? Graves disease can cause alot of crazy things that match millions of conditions. Have you lost or gained any weight without doing it on purpose? Are there any dark circles or puffiness in your eyes? Does it hurt more than it should to have bowel movements you may have noticed they are more uncomfortable? The hair falling out sounds hyperthyroid but the cold sensitivity definately sounds hypothyroid. Low thyroid will fatigue you to crawl up the stairs. It did that to me for months until I got thyroid pills. Your doctor would know for sure if you have MS and would have sent you to MRI long ago if they suspected that so start with smaller stuff. Internet surfing can worry you sick so stick to trusted sites of expertise. It can make you sicker to worry of all the stuff you read and sick not to know too. Just stay focused ruling out one at a time. Talk to your parents and doctor about keeping you updated on your labwork and results so you dont get so much anxiety and I hope you find out soon sweetie!

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Also, have doc check your CK levels for wasting, its very important to catch that early. Its a simple blood test.
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1127960 tn?1264563492
Have they checked your thyroid? .....yes, and it is normal, but they are watching it because it is toward the hyper side.
Have you lost or gained any weight without doing it on purpose? ....lost weight from 110 to 85 during summer. now i'm at a nice in between 90s.
Are there any dark circles or puffiness in your eyes? .....they sunk in at one point, but look much better now that i'm not so sickly looking and gain a little weight. from quitting all meds to make sure meds were not the culpret.
Does it hurt more than it should to have bowel movements you may have noticed they are more uncomfortable? ....i have them much much less than i used to, takes more effort, and sometimes uncomfortable. never had been constipated before this started.

my trouble with stairs isn't fatigue, but muscle weakness, joint pain, and leg pains of various kinds. plus, i was using all my upper body strength to get me up the stairs before,,,but now i cannot grip because of my joints and electric pain shooting throughout my arms and hands.
oh no, internet stuff hasnt been worrying me more than the doctors. They ruled out all of the little stuff. Then they moved to rheumatoid arthritis, lupus, leukemia, lymphoma, lymes,..........etc.etc.
The big stuff IS what they are looking at, and my doctor wasnt even taking any notice to my constant numbness, change in vision, purple lava lamp legs, and inability to walk stairs, along with loss of sensation. He was very stuck on why i could have just lost all of my hair in conection with my past history. my family had to push him before he would pay most attension to pain, numbness, weakness, and joint pain.

I am only recently been a tad worried, and that is only with the onset of all the same symptoms in my arms and hands that may be crippling my grades in school. thats about the only thing i'm worried about. :) lol.

i found a very simple test that is used in people with raynaud's phenomenon to tell wether the Raynaud's is primary or secondary. Secondary Raynaud's is when the person has an accompanying connective tissue disease. i though this would be a good thing to bring up to the rheumatologist; it could help move us in the right dirrection:

· Nailfold capillaroscopy—drop of oil on the patient’s nailfolds. The doctor examines nailfolds under a microscope to look for problems in the capillaries. If capillaries are enlarged or malformed, the patient may have a connective tissue disease.

i wish i had a list of the progress my doctors have made, to show me what i do not have, what we are looking at, and the symptoms i have are (so that i can update them and they are not always acting like they dont know my symptoms)
do my symptoms sound neurologic to you, or rheumatologic, or....what do you think?

Thank you so much, you have been a big help!
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1127960 tn?1264563492
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How are you doing now?  I have the same symptoms!  What helped you?  I am devastated.
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