ok I have been having problems for several years now and no one can tell me what is going on. Here are a list of my sx

Head-
Blurry vision need glasses but cant wear them do to my eyes always seem to be changing in amount of blurriness and vision capabilities this has gotten progressively worse.
Jaw pain feeling of muscle spasms in my jaw 2-4 times a month
I get eye twitches that can last several hours at least 2-4 times a month
Constant ringing in my ears can get loud enough that its painful
Hearing loss- esp with being able to process and hear what words are being said
Feeling of being off balance and dizzy
brain feels foggy and I am extremely forgetful
constant fatigue and rest and sleep dont help
talking is frustrating as I cant get the words out its almost like I start stuttering with trying to get the word out that I want to say or i combine words like i want to say cat dog and it comes out as dat cog.

Body-
Intense burning sensation in neck and shoulder and back- daily
Muscles in back are progressively being pulled tight started as lower back now has gone up my back to almost my neck area, becomes worse the longer im on my feet
Urinary incontiness (sp)

Arms-
hands go numb and cramp- daily
pins and needle feeling when I use them for normal everyday things-daily
burning sensation in arms-daily
getting harder to drive cook and write as they go numb, pins and needle feelings with small usuage. cant peel more than 3 potatoes without it starting and can only drive a few miles before the feelings start.

Legs-
pins and needles when i walk or stand to much ( cant get through a grocery store or walk more than 2-3 blocks before it starts then progresses to numbness and extreme fatigue which causes me to have to stop)
have lost feeling in legs causing me to fall 5 times in the last 4 months
Feelings of creepy crawlies on my which causes me to scratch and scratch several times weekly
Loss of balance from walking- almost daily

I have begun to not want to go out any where cause of the fatigue numbness and pins and needles feeeling. Doing normal everyday things are getting harder and harder to do. when I go to the grocery store i am either forced to do only a little shopping or to get a scooter as i can not make it through the store. i have since stopped taking the kids out as i can not do the walking without extreme fatigue and the pain.

If I keep progressing at the rate I am going in less than 5 years I will be in a wheel chair. I went from being able to do anything I wanted to not being able to make it through the grocery store without having to get a scooter to make it through.

My emg was normal
My blood tests were all normal
b12 was checked it was 330
no lyme was checked
Mri my neuro said was clean but report showed incedental nerve root sheath cysts not big enough to measure.

My neuro believes all my problems arise from low b12 level even though it is in normal range. she is sending me to a neuro opthomologist for my eye problems and told me to take some b12 supplements and come back in 2 months.

My family has a history of alot of medical problems my mom has metabolic myopathy 3 aunts have ms.

I have been dx'ed with
6th nerve palsy
idiopathic periphial neuropathy
muscle weakness
skin sensation disturbance
visual loss
that is all i can remember right now.

forgot my neuro also said my reflexes were not normal in my legs. the skin sensation disturbance is with the pin test i dont feel anything sharp until above my knees and above my elbows.

Hello and welcome

This is a very supportive site, with lots and lots of really wonderful people who will be happy to help you if they can.

Your list of symptoms is long and sounds like life is really difficult for you. I hope you are able to find some answers soon - I would imagine that not knowing is the hardest part.

Regards

Lyn

Sure sounds like MS to me, but an MS dx is not easy to attain. First they have to eliminate all the possible other causes..

It would be nice if there was a simple blood test for MS and maybe, one day, that will be so.

Hang in there and thanks for joining us..

thank you Sally and Lynn. It has been a long road. My first pcp didnt want to send me any where or do any tests even though I had no tender points she dx'ed me with fibro and it was hard to get from under that dx. I finally have a pcp who is great and truely believes it is ms but wants me to be treated by a neuro. My neuro who I thought was gonna be great as she likes cases where its difficult to come to a dx has been anything but great. My first appt with her was only about 30min long with a good 5 min of that with her leaving room to take phone call. She seemed irked when I gave her a paper with all my symptoms on it even after i told her I have been having major memory problems and it was easier for me to write them all down. I thought our first appt that she would have done alot more testing then reflexes and follow her finger and then sent me for blood work and mri. She wasnt originally gonna do my spine then decided to do it cause of me other a few seperate times losing feeling from waist down. She suspected MS then but not when she got my mri back. I had even brought up to her about writting script for 3t machine but she told me that the normal one they use will be just fine. I just so want an answer and a treatment plan. I cant continue like this with no treatment.
Sorry so long just so much to say.

There is a criteria for diagnosing MS: Positive MRI, symptoms that have appeared at different places on the body and over different time spans.
Thats pretty much it. Sometimes they look for protein in the spinal fluid, but even a positive result there may not get you a MS diagnosis without a positive MRI. A positive MRI is MULTIPLE lesions. These lesions must be indicative of MS. There are other disorders that can cause lesions.

Pretty much your doctor will try to rule everything else out since your MRI came up negative.
I had negative MRI's for years and then all of a sudden one day lesions showed up. Getting an MS diagnosis can be a very long journey.
Try to remain calm. Any treatment for MS is not going to cure you anyway.

Not knowing whats wrong with you is EXTREMELY frustrating and the very worst part of it all. I used to think I was nuts! Hang in there and just prod the docs to keep looking. Sometimes you just have to wait. Eventually something will rear its ugly head and you will get a diagnosis.....whatever that may be!!

thank you karilann. I know there is no cure for ms I just want someone to dx me with what is wrong with me and to treat me. right now I have no treatment and am going down hill fast. My therapist who I see weekly for over 3yrs believes if I dont get some type of treatment soon I will be in a wheelchair in under 5yrs. I cant get through a grocery store with out being in pain and weak. My legs will actually be shaky by the time I am done. I have resorted to using a scooter if i am doing a big shopping trip.

Did you say that they did NOT check you for Lyme's disease?
Or did I mis-read that?
You should definitely get tested for Lyme's, it can look just like MS.
If they say they don't want to do it because you don't live in an area known for it, insist on it anyway. It's just a blood test.

Best of luck

Yes I was checked for Lyme

.[/QUOTE]
My emg was normal
My blood tests were all normal
b12 was checked it was 330
no lyme was checked
Mri my neuro said was clean but report showed incedental nerve root sheath cysts not big enough to measure.

My neuro believes all my problems arise from low b12 level even though it is in normal range. she is sending me to a neuro opthomologist for my eye problems and told me to take some b12 supplements and come back in 2 months.

My family has a history of alot of medical problems my mom has metabolic myopathy 3 aunts have ms.

I have been dx'ed with
6th nerve palsy
idiopathic periphial neuropathy
muscle weakness
skin sensation disturbance
visual loss
that is all i can remember right now.[/QUOTE]

Hi...I'm new too...but I didn't see a "Vitamin D" blood test included. That's the big new push for testing these days. Maybe you should get a referral to the drs your aunts see...if they are local to you? I've seen info on the internet that says that MS is not hereditary; however, you can have genetic pre-disposition to it....the non-medical way to say it is...you can a have a "weakness" to it. No dx here on my side, so I'm no expert. Still in the same process.