crazy symptoms
 

Hi, I'm Robin and I'm 30 years old. I started having problems about 9 months ago, when I worked at a daycare. I got hand,foot, and mouth(a coxsackie virus). Then I started getting pink eye about every 3 weeks. Then came the joint pain and headaches. My co-workers thought I was just being neurotic. One of them even made fun of me. I went to the ER after a sudden onset of not being able to taste or smell and some difficulty swallowing. Tests, tests, and more tests. They thought it was maybe Lupus, after a few doctor visits to a Rhuematologist and tests he said maybe early stages of the disease. Next came numbness and tingling in my left hand and back and more bouts of no smell/taste and tongue weakness. I also have severe facial pain and electric shock feelings in my eyes. My Rhuemy then sent me to a Neuro doc who said maybe MS, after MRI was negative both doctors decided that I didn't not have lupus or MS, but that I have a problem with overactive nerve endings, possibly caused by that virus I had. My neuro never specifically said PN, so I'm not sure what to say I have. He started me on Lexapro, he says in very low doses it helps to calm those nerve endings.

First of all i'm so sorry this happening to you,how awful. And that co-worker who laughed shame on them,but you will see that on many of these forums.
Just think there rude are parents forgot to teach them to care.Or there
:eek::eek: nitwits forget them..Do you know if your Neuro was one
who works with PN...Have you been on the med very long. In a lot of cases
with meds it can take 6 weeks to start working,and you will know a lot sooner
if there's a allergy..Itching,swollen tongue.bisters in mouth all over body.
Honest I wish I had a answer. There are wonderful very bright people on this
forum,they will be checking in..Good Luck,there are so many kinds of PN.
You must first learn to speak up,there are good Drs,please ask your's if
they think it's PN there are very many tests. Hugs to all sue

RE: Reply
 

Thank you for your reply, I know this is not in my head. Some people are so narrow minded, this same woman also made fun of another co-worker who was diagnosed with MS. The horrible part is that she works at a church!! Anyway, thanks again.

numb face etc..
 

Lexapro is an antidepresant as you probably know.. I did not know it was used for nerve problems. I have been through the MS, neuropathy TIA diagnoses.. The problem with me is my sinus' and they can't fix it. My face is numb to the point it affects my speech and taste. Lips also numb.

Hi. Welcome. I am sorry you are going through this. I relate because people are clueless. I hope you have some other supports to get you through. If you want an email buddy I am here too. I am 29 and I feel when you are young people just think you are fine with no issues. It can be frustrating and scary.I have been dealing with this for a year and have seen all different docs in and out of state. Anyhow I have pn but similar to rsd,possible fibro and auto immune. My issue started in the left inner/ankle foot and now is in both. I also have had constant infections. I have been dealing with a horrible eye issue for 2 months,had an ear,out of it often dizzy,now back. I have had so many tests and specialtists. A few thoughts have you had emg/nc,a complete set of bloodwork for other auto immune issues and deficiences,mri of your brain? I am no expert at all on tests or illness. Before this I had no clue what pn was. There are some people on this board smarter then the docs I saw at cleveland or ucla. So this is a great support. I have not heard of lexpro for pain but was on it years ago for depression. If you feel it is not helping you I would call your doc. I have had little success with meds but have been on them for this. I had heard topomax I think was good for head ache issues but many also start on neurontin or lyrica for the nerves too which I was on as well. Ok now sorry if this was too long. Many thoughts your way.

Keep pushing the doctors
 

I have found that she who screams the loudest gets the most attention! One of the biggest lessons I have learned here on this board is that we have to be our own advocates.

If you are not getting the answers you feel you need, keep pushing. Keep asking questions and keep trying until you feel you are being heard.

Lots of us have been told "its all in your head" and we know that if it was all in our heads, then why does it hurt so much?

Anyway, use this board as a resource, and ask as many questions as you can. Do a lot of research on your own and don't give up!

Keep us posted too, we learn from each others' successes.

I'd suggest
 

you get tested for herpes zoster. Shingles can activate and not have lesions per se. But it will show titres in the blood if active. Antiviral drugs can then be tried to squelch this after testing.

Did you have elevated immune markers?

If you think this is viral...and it might be, you can try 1 or 2 grams of the amino acid lysine daily. This sometimes puts viruses into remission.
My son is now using this following Mono... he has episodes of mono like symptoms after stressors. And it is really helping him.

The amino acid arginine if high in the diet stimulates old viruses to reactivate.
By increasing lysine, this can throw a damper on the activity.
Here is a food chart showing high arginine containing foods:
http://www.herpes.com/Nutrition.shtml

Loss of smell and taste can be related to zinc deficiency. Are you taking any medications? Some deplete zinc. If you PM me I'll look that up for you.
Low zinc also impairs immune response. And your whole post suggests an impaired reaction to an infectious assault.

Whenever people get these odd/extreme reactions that cannot be easily identified one should consider viruses.

Did you get the flu vaccine that is nasally introduced? This could also be a trigger for face pain.

Hmmm
 

My son just got over Shingles had the up up around forehead eye area.
he hurt..But the nerve pain went away,had to treat the eye on side
the slingles were on.

When I was in my 30's I checked in on a neighbor in her 70's she had
them all around her side,she eventually had all signs of what I have PN.
Try anything Mrs,d saids she had helped so many.

Dan your right sometimes we do have a habit of th inking ,juust cause your
young you will heal,maybe no one wants anyone so young to hurt.
Seems like my youngst 30,welll when he said at he had shingles I know
it's not but I'm thinking he's to young.. Who knows what's to young.Sorry

And seams, is right speak up yell but get yourself heard by the Drs..Hug's
Sue