totally frustrated

[chefaid90]

i have been seeing my neuro for almost 2 years now and my muscular neurologist for over a years now. I have gotten absolutely nowhere with them. I have had mri's, cat scans, emg/ncv, spinal taps, bloodwork, evocted potentials, and tons of blood work. here are just some of the dx's they have given me but with no treatment yet.

Peripheral neuropathy, 6th nerve palsy, muscle fatigue, muscle weakness, myalgia, diplopie, macular atrophy, visual distortions. here is some background on what is going on with me.

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, at times colors are hard to tell apart but this comes and goes. i also get very sharp stabbing pains in my eyes mainly my left one that is very very painful (not a headache my eye just aches)
         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
         memory loss
        

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

Please can someone help me find out what could possible be wrong. My pcp is still set on it being MS but my neuro says no because all the test have come back negative other than the EMG and the evocted potential dont have the report for either one of those. but i do for everything else. My muscluar neuro thinks it might be a form of muscular dystrophy but he is taking he damn good time doing anything to find out if it is I see him again on the 5th and my neuro told him to run the damn muscle biopsy on me instead of waiting on my mom to get hers since we dont know when she will get hers done. a little more about that

My muscular neuro sees both me and my mom now. they believe we have something that is inherited but are not sure. we have similiar problems but totally different too. yes we both have the muscle weakness but not much more than that, she doesnt have the eye problem, balance problem, brain fogginess, pins and needles feeling.

[chefaid90]

I have been tested up down left right for all Lyme diseases and have been negative every time. i have had seen a Lyme specialist who also concurred that this is not Lyme disease.

[TheLightSeeker]

Hi chevaid90.

You need to find an LLMD-if you haven't done this already_ -To help you rule out NeuroBorreliosis, also known as Neurological Lymes Disease.
It is a great MS mimicker and very difficult, if not impossible for Neuros and MS specialists to detect. (most  DX'd lymes patients have no recollection of a tick bite, just in case you may have the inclination to disregard this b/c of no tic byte!)
Often lab results do not show anything.
Best wishes.
Niko

[chefaid90]

never heard of this. do you have a link to information about this? as i dont see anything online really about it.

[caregiver222]

The Geneva-based company developing an HERV-W treatment is Geneuro, not Genetic.

[caregiver222]

Rule out an HERV-W infection. Torrey, Yolken and Sarven Sabunciyan of Johns Hopkins have done research in this area. A Swedish biotech start-up called Genetic is developing a potential treatment.