[anon1028]

I would say with some degree of certainty that a number of us has a symptoms that is unique to us. I was just wondering aloud, what if we posted that symptom that your doctor can't seem to find an answer to, and we each mention in passing at the end of our doctor visit "by the way, my friends has This symptom that no one can figure out, any suggestions off the top of your head?

Maybe it's crazy, maybe its not. Let me know what you think

Mine of course is waking up to vivid dreams and burning, gripping pain in head legs and arms, and some chemical is being released that makes it terrifying for 20 minutes at least. Worst symptom I have, day would start pretty normal without it not sugar issue. not med issue.

Anyway it was just a thought. I know others on here looking for answers to that one really vexing symptom.

I'm going to NYU, one of the best in the country soon. Could throw them a question or two for a friend.

Let me know what you think. Thanks.

PS if a doctor hears that no one has been able to figure it out his pride will kick in and he will think about it a little longer

[RAllen82]

Good idea. Mine is having these mini panic attacks while trying to fall asleep and I guess just sleep disturbances in general. Granted, they have gotten better when I stay on the Mirt. But even in therapy today, the therapist said well go see a neurologist!! Ugh. I didn't even try to explain.

I sure hope you get some answers. I wish there was a cure all pill for this. The toll PCS has taken on my mental state is something that will last for the rest of my life. I'm afraid.

[anon1028]

Originally Posted by RAllen82

Good idea. Mine is having these mini panic attacks while trying to fall asleep and I guess just sleep disturbances in general. Granted, they have gotten better when I stay on the Mirt. But even in therapy today, the therapist said well go see a neurologist!! Ugh. I didn't even try to explain.

I sure hope you get some answers. I wish there was a cure all pill for this. The toll PCS has taken on my mental state is something that will last for the rest of my life. I'm afraid.

Well, I get scared too sometimes. But it doesn't do any good. And there's always this board to get us through. Let's hope it doesn't last with us the rest of our lives, but it definitely makes an impression Like your worst boyfriend/girlfriend ever.

I will mention the mini panic attacks while trying to fall asleep when I go to NYU. I promise.

[SarahSmile0205]

I think my doctor would be receptive... at least the one in IN

My issue is my stabbing/burning headache that is right above and a little back from my temple... I think that is the headache that is causing the dizziness and nausea and all my other headaches...

[anon1028]

I will jot them both down and throw them at each neuro (I see two this coming week) I see

It can't hurt and you never know. I have brother asking father in law who is a doctor. and brother in law who if pharmacist.
My aunt has a medical team she is in constant contact with because her daughter has thalassemia and she is in charge of the foundation, and my sister and cousin are doctors, who know neurologists. So I sent out my worst symptom to all of them via email
Like I said, you never know who might have an idea
I am NOT living the rest of my life on this couch.

[dawneve]

Sometimes when I chew food, the inside of my head gets very weak...I can hardly chew or swallow.

[dawneve]

Sometimes when I chew food, the inside of my head gets very weak...I can hardly chew or swallow. Sometimes my balance and vision goes bad. I wish I could sleep.

[anon1028]

Originally Posted by dawneve

Sometimes when I chew food, the inside of my head gets very weak...I can hardly chew or swallow.

You should put this out there as a new thread. You might get some helpful answers. Have you mentioned this to a doctor yet, as well as your other symptoms. I promise I will throw it out there in one of my appointments, but it could never substitute for a hands on exam.