Hello everyone! my name is Victoria and I am from/currently live in Philly. I am 27 and have been dealing with an undiagnosed neuro problem for the past 2 years. You all seem to have a combined knowledge on these things so I hope you don't mind the barrage of info and questions. As fellow sufferers, I'm sure you can also understand the extreme frustration and despair that comes from constant pain and no answers.

OK...so here goes;
About 3 years ago I started suffering from intense and debilitating head pain. At the same time, I was having joint pain that was sever to the point of not being able to hold my coffee cup. It was in my hands, hips, and knees. I was working a very stressful and physically demanding job. I was fired for not being able to do the job, and my joint pain went away so we all assumed it was stress. I did not and still don't have health insurance so I am guilty of letting things go farther than they probably should. anyways, the head pain did not go away. I also noticed a dime sized hard, unmoving lump on the back of my head. For a year and a half, the pain got worse and more frequent. I also started touching my head everyday - eventually more lumps appeared. Currently there are 6 of them - all hard and unmoving...sometimes they get more pronounced. So, cut to a year ago and I went to a doctor that has low fees for people without insurance. He did a base checkup and noticed that my reflexes were strange - hyperreflexia as he called it. That with the pain and lumps and he sent me to a neuro. I went to one affiliated with Cooper Hospital because they were the cheapest. I saw her three times. The first time she ordered blood and an MRI. Now, I don't know if this is sop but on the 2nd visit, she didn't even look at the MRI - she read the radiologists report which said all clear. She gave me a script for neurontin and a nerve blocker in my head for occipital neuralgia. I went back, told her neither did anything and that I was experiencing balance and vision issues (seeing black spots, double vision, and they shake) and all she did was double the neurontin and schedule a new appt. Needless to say I am not seeing her again. That was quite a few months ago and things are getting worse. Symptoms are; near constant pain in my head of all different kinds...small areas that pulse in intensity, stabbing in the back of my head, dull building pain all over. I get very dizzy, I am not sleeping, I have balance issues, noises and the slightest touch (if someone put their hand on my shoulder) makes me jump, my legs and arms feel like the muscles contract and twitch, I am dropping things, my hands shake and I still have the vision problems. Also, I am having crazy mood swings - it changes ten times a day like a light switch going off. I don't have any family...it is just me and you know, I'm scared. I am really unable to work, but I have to to try and see these doctors. I have an appt here in Philly with a u Penn neuro but the receptionist said it's at least 400! oy vey....so basically, does anyone have any ideas or does this seem similar to anything you've seen or are going through? also, what's with the MRI? Can it miss things? and why didn't she even bother to read it?

I am sorry this is so crazy long and rambling! i'm just so nervous and scared and in the dark. thank you for reading this and any responses. I wish you all the best!

-V

Victoria,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Glad you found this site. There are a lot of people here that have a wealth of knowledge and as you progress in your quest for an answer they will be here to help. I just joined in November also. I have yet to get a diagnosis.

Not surprised the doctor didn't actually look at your mri. I believe most rely on the radiologist to tell them what's there since that is their speciality. Possibly she didn't have program to open the disc. That is what happened when I gave my mri disc to the neurologist.

Stay strong you have wealth of knowledge to draw from here and lots of people to just talk with

I'm glad you found us here. I myself found this place a couple of months ago and I can tell you the people here are full of knowledge and very helpful. I myself just had a scs device put in for my spine and they were so helpful with everything I was going through. Enough about my problems.
I was wondering maybe if you have been tested for fibromyalgia or possibly MS I know some of the things you have described are tell tale signs of both. My wife suffers from fibro and the joint pains you have explained are very common with fibro and she also has days that just touching her can be very painful for her. I hope you are able to find out what's going on and I will be following your journey to find some answers. Let us know if you have any questions there are some very knowledgeable people here and willing to lend you that at anytime you just need to put it out their.
take care and glad you found us here.

Welcome Victoria,

I hope you find some help here. It seems like a scary thing you are going through, especially for someone as young as you. Most neuro-issues seem to be pretty scary. Please have courage and follow your intuition as much as possible.

I accidentally titled my introduction the same as yours. Please forgive.

Thank you everyone for the warm wishes and welcomes!

I don't have any family, and my husband is so incredibly frustrated by what is going on (and he's italian and has a temper so he just yells alot heh) so I really have no one to talk to....so finding this place is just great.

No one else understands the despair of being in constant pain and also not having any answers. I go through feelings of guilt for being "lazy" and for feeling like a "burden" you know? There are the times where all you want is a freakin answer or the times where you have an ER doc suspiciously eyeing you and assuming you're looking for drugs that just make you feel like dirt.

The feeling like I'm lazy thing really gets me depressed...as if being on a constant roller coaster of "am I going to be in pain today?" isn't enough, you know? Like I said, I don't have family and I've been on my own since about 17 so I've always worked very hard to take care of myself...so I just feel so helpless and guilty that sometimes I push myself a little too hard and that makes it worse!

Anyways, it's nice to have a community of understanding, kind and knowledgeable people - thank you again for the warm welcome. Also, thanks for the info about the mri (neuro not looking at it)

I have an appt in January with a U of Penn neuro so we'll see...it's 400 bucks!! lol I'll probably just walk out of there without answers and another freakin neurontin script...grumble

Owlish - you know what they say about great minds....

Happy Thanksgiving All!!

-Victoria
(sorry I always write so much heh I...ramble)

To NeuroTalk!

huzzah and hurray all around!

I am so glad you joined us..It is great to have new friends from all over the world.
I think you should check into medicade..These bills will overwhelm you ,and then you will have more pain from the stress..Good Luck,GOD BLESS YOU