Sometimes not knowing is harder to deal with than knowing. Sounds like all the right tests are being done, just a matter of getting to the root cause. Still sounds like it is something at the nerve/cellular level. Hope you get it resolved soon. I can onlu imagine how you both must feel.

i sure hope they find the cause soon it sucks when our kids are not feeling right and the places we go for help can not help us

I so wish somebody had the answer for her. :(

Just don't give up. When I had a tachycardia issue going on as a teen, two general practictioners, two ER trips, two cardiologists, and one endocrinologist were completely clueless. Four years later I went to a different GP and she sent me to two more cardios. The last one figured out the problem (we had a big clue what it was, but wanted the confirmation). So that's, what, 9 doctors for the answer? Get a third, fourth, fifth, sixth opinion if you have to. Drive them crazy. Insist that they figure it out.

BTW, I was finally dx at the Detroit Medical Center. If you don't get an answer soon, don't hesitate to go to a medical school or major medical center. They see a lot of things...

Thanks guys. The support here really means alot. I feel she is kind of getting depressed about this. I have to watch her like a hawk. I'm a wreck. She just keeps saying that people just think she's crazy. Unfortunately is is very difficult for her to describe the "numbness". I took her to a University Hospital. There are tons of doctors and professors there so I'm sure we will get an answer. If not I will take her into New York City and get her to one of those hospitals. I am right here on Long Island so the "city" is only about 45min away. My older daughter had her leg surgery in Hospital for Special Surgery and subsequently at New York Presbyterian Hospital so I am not afraid to go there to get the help she needs. It is just so frustrating seeing her this way. My husband and I are just wanting to help her "get back to normal"

I will pray your daughter gets answers soon. Please let her know she has our thoughts and prayers. I can't imagine how frustrating this is for her and you. give your daughter ((hugs)) from me. :)

Just seeing this thread - so sorry your daughter and you are going thru this! I'm sure this is causing both of you tremendous anxiety.

I can't agree more w Crystal about getting your daughter to a large university hospital. There are some very smart ppl in the NYC area in the teaching hospitals. They are much better equipped in diagnostics and trained in rare presentations of illnesses.

Just a thought, you may have already done this, but a journal of when this started, how started, which parts went numb first, progression of numbness, would probably be appreciated by the drs.

Will be keeping the two of you in our prayers.

It sounds like you're on the right track.

If you don't get answers from one uni hospital, move to another, etc.

I actually was told by a dr. at UofM that I didn't have something that I and my GP are quite certain I do have. So, sometimes you do have to move around to get the answers that you need.

You sound like a fabulous mom. I know when I was going through my thing, I waned my mom there but not visibly panicky.

That is the most frustrating part of having something that can't be easily diagnosed. I was told I was crazy and that I needed to be treated for an eating disorder. Your daughter is fortunate to have you at her side. Keep hammering away at the doctors. I pray the mystery is solved soon so that your daughter can get some relief.

I think the fact that I am trying to keep calm on the outside is making her believe that I don't care. I told her I will do everything I need to do to get an answer. I also told her that we believe her. My friend has MS so she can relate to the "nummy feeling". It makes my daughter feel better that someone else believes her also. It's harder when stuff happens on the weekend because you have to wait until Monday. This is the hardest part about being a Mom. It's not the fun part. I went from being so high and proud of my son for graduating from college on Tuesday...to this on Wednesday. She will be fine I am sure of it. Just wish we knew so we could treat it and get rid of it already

I feel so bad for you all. It is so scary to have symptoms and no answers. I know they don't like to prescribe meds without a diagnosis but could they give your daughter a mild anti anxiety medicine to see if that helps. I have an anxiety condition and it can manifest in many physical ways. Now a days teens are under so much pressure. Just a thought. I will keep her in my prayers.

Keeping your daughter in my prayers.. Maybe soon you will get a answer or at least they will send you to the right place for diagnosis! HaNG IN THERE

Wow...just seeing this thread. I am so sorry. What a concerning thing to be going through...and definitely hard on a teen. I hope you soon find out what this is.
Prayers for you and your daughter.

Saying prayers for you, hoping you find an answer soon and it is something easily treatable. I understand the numb feeling, I lived with a father who had multiple sclerosis my whole life...Hang in there, have hope.

I am so angry right now. My friend who has MS went to this neurologist for her, I guess, annual appointment and they thought it was appropriate to discuss my daughters condition. The doctor told my friend that we may never know what it is and it might just go away. She told her about my daughters bloodwork and everything. That she checked for lyme and everything. WTF I am fuming!!! Why is my daughters doctor discussing my daughter with another patient. I mean my friend knows everything but who the heck is she to talk about my daughter anything!!! I have to go there later at 4pm for another appointment with my daughter. I thought I would go at least to hear about the bloodwork and to get a copy of it and the cd of the MRI. Maybe I should ask her about my friends MS and what is going on with that!!! I think anyone who gets in my way will feel the wrath of this sicilian mother!! I have to calm down. Oh maybe we should just sit around and wait for it to go away! yeah right. When my daughter looks down at her arm in class and sees a drop if blood and has a scratch that she didn't even feel I am not waiting for anyhting to go away!! Sorry for the rant. I will let you know what this idiot doctor has to say about the next step we take.

If this is true - and I'm not doubting you, I'm questioning this "friend" and how truthful she is - this is a violation of HIPPA. The dr should know this is a big NO NO. Charges can be brought against him for discussing another pt to someone else (not dealing w her medical care and info necessary for the other person to treat your daughter). This is a federal offense that carries fines. This is serious business in the medical world if this friend is telling you the truth.

Is this dr affiliated w a hospital, university, or is this his own practice?

I think it is about time for a new dr, especially if this is true.

I've worked in healthcare for years, practice in clinical care, and HIPPA is a very serious violation.