I am so scared.. is it ms? fibromyalgia? lupus?

Hello.  I am a 27 year old female.  I had a baby 18  months ago and since then have had on and off symptoms.  
I have been to a neurologist several times, but they have yet to give me any clues as to what is going on.  These are my symptoms
-neck hurts on left side almost always
-right side nerve pain.. i feel it in my shoulder and hip and even down my leg and back.. sometimes tingles too
-right eye hurts
-joint pain in both hands and feet.
-ocassional nausea/off balance feeling
-anxiety

I have had a MRI of my brain.  It showed 1 lesion and the doctor said that it could be MS but most likely not.. He scared me to death so I went to see another doc.  This doc did another brain MRI a few months later and one of CSpine/TSpine..  No lesions showed up there.. just the 1 in my brain.

I do not feel fatigue.

I keep getting really bad anxiety when I feel these weird symptoms.. I will feel that way for a week or so and then it just goes away.  

Any suggestions on what to do would be awesome.. I just want to know what is going on with me.  I can't seem to focus on anything else.. not even my little boy!  Please help!

[Sumanadevii]

Lesions can be caused by many things.  Did the neuro state it looked like an MS lesion?  If he didn't explain, I would out right ask him.

You describe many things that are neurological in nature.  So MS sure would come to mind.  However, there are many MS mimics and those need to be ruled out.  Is your neuro doing that?

To be honest, anxiety can cause symptoms to become larger than life but when you have symptoms that are screaming neurological, you deserve an answer.  If he can't supply an answer and run some more tests, I would go for a second opinion.  Too many of our posters have been sent off with the excuse it is stress, anxietyor conversion disorder only to be dxed years later with MS.

Stay fighting until a dx makes sense to you and keep up posted.

Sumana

[travelbug11]

The neuro didn't say.  I know it wasn't there a few years ago though becuase I had a mri of the brain back in 08.. at that time he said it was occipital neuralgia.

Sometimes I just think I am going crazy. My family is sick of hearing about it.  They think that just because nobody in our family has had ms that I don't have it.  This is just so scary.  I want to have another baby, but I am scared to do anything until I know what is going on.

The doctor is testing me for lupus and asked me about fibromyalgia.  I have no idea where to go from here.  The doc just said wait six months and come back for another mri.. it's the waiting and seeing that I can't take!!

I waited 8 months in between the last mri's... and I had symptoms in between that time.  Would that show up on the mri as another lesion if it was ms?

[travelbug11]

I went to the rhumatologist.. They said its not lupus and most likely not RA.  I keep getting these hot feelings in my lower legs and today in my arm.  It only lasts a few seconds.  It doesnt hurt, but it just feels strange.

Any ideas anyone?

[alienshadow]

Have you had your B12 checked?? Or Vitamin D? I was having symptoms and my B12 came back in the normal range but lower than 400 most doctors say above 400 is what they want! I feel better since I started the B12 pill but it has taken a few weeks.. I still feel down but I know it isnt due to MS.. You probably need to get your blood worked up see whats happening there... I am also being treated for anxiety/ depression but that wasnt my neuro Idea that was my general Dr he says I have let my mind zoom in on all these symptoms and anxiety just intensed them. I agree with what he said anxiety will kill you quickly!! Goodluck..

[carrie235]

Hi TravelBug:

I stop by this forum occasionally, but saw your post and just had to write.  I too have/had similiar symptoms as you.  My family was/is also so tired of hearing my complaints.

Anyhow, I had very very strange neuro symptoms come on suddently after a surgery I had.  Tingling/pulsating/vibrating in legs, trembling in hands, crazy crawling/bubbling sensations on skin, numbness in face/feet/toes and OVER THE TOP ANXIETY!!!  All came on literally overnight.  I went to three neuros.

First two said "it's anxiety...you need an antidepressant".  I said "it's the symptoms causing the anxiety!!!  NOT the other way around!".  Finally ended up at UCSF, had MRI and showed 20 YES TWENTY lesions....neuro says "have you had lyme disease".  I'm serious...that is the first question he asked me.  I said no at the time because I suspected lyme prior to the appointment but tested negative at LabCorp.  Anyhow, they ran every test under the sun including a lumbar puncture and retesting for Lyme.  All negative.  Lesions are not typical of MS... this is not MS they tell me but comeback in six months for repeat MRI.  I go back...no changes...this is not MS they say.

Fast forward....I'm thinking again...maybe it's lyme and I start researching.  I go to Igenex Labs in Palo Alto (they look for DNA of lyme bacteria...not antibodies like other labs....our bodies stop making antibodies which is wy regular testing is unreliable).  Anyhow, I tested POSTIVE for lyme with a co-infection of erlichosis.  So, I find a lyme literate MD (LLMD), started treatment that day and almost a year later, I am SO MUCH BETTER!!!  I am still testing positive for lyme and my coinfection, but so many of my symptoms have gone away...no more numbness - and that was a daily thing for me for an entire year!!!  I feel so much better.

Anyhow, I know what you are going through, I do....  I want to tell you that I too as completed scared of MS....I still am to some degree...which is why I come here every so often....  BUT....I encourage you to look into the possibility of Lyme Disease.  I do pop in and out of the lyme forum on Medhelp and JackieCA is a great help over there.  However, I find that the lyme forum at Healingwell.com is much more active and I spend a lot of time over there now.

I know it's not easy, but try not to panic....if it's lyme disease, you can and will get better...but...you have to be treated for it.

Mine got suddenly bad after my surgery...my surgery caused my immune system to become too stressed to keep the lyme in-check....that is what my doctor told me and it makes perfect sense!!!

Take care and I hope you seek lyme testing through appropriate lab!

[carrie235]

Also, my hands and feet were killing me too!!!!!  That...is now gone too!!!  I literally could barely walk barefoot at one point.  Also, the pain in the eyes....every symptom that you listed...I had.  I felt like I was reading my own post a year ago when I read yours....