EMG to rule out MS

My neurologist sent me for an EMG to rule more things out, she was suspecting MS. The EMG was mostly normal, with some slowing in nerve/muscle response of the feet. The report said I displayed poor effort, if my ability was actually that poor I wouldnt be able to hold myself up according to the dr. I said it is awefully hard to make muscles and lift your leg up with needles causing horrible spasms. After laying down for nearly 2 1/2 hours I was also able to walk fairly well for the 10 steps he wanted to observe, but within 50 feet of leaving I was back to dragging my feet.

Anyway, being a normal EMG she is now leaning towards conversion disorder verses MS. I am a medical professional and have an understanding of the disorder, why, how, progression, treatment, etc... I know its a true physiological response to a psychological trauma, its not "faking it". Honestly, I dont fit one bit. She insists that I must be repressing some sort of trauma or sexual/physical abuse. This is just not the case.

She said the EMG showed no demyelination, but my understanding is it wont show anything in those areas with MS. Everything I am reading says that EMG is not at all diagnostic for ruling out MS. Either she is stupid or not telling me everything, I dont know what to think. I can not have an MRI at this time so she did agree to send me for a LP, since I have a SCS, hardware and lots of scar tissue she wants it done with a flouroscope. She is also referring me to a large research hospital for evaluation.

My symptoms have been extreme fatigue; sporadic numbness and tingling sensations in my face, head, hands, and feet, tremors, vibrations, feeling of being sprayed with water and buzzing sensations all over my body, painful muscle spasm and stiffness in my arms, back, and legs, shooting nerve pains throughout my body, squeezing sensations around my head, constant headache, bladder and bowel problems, blurred/double vision, slurred speech, cognitive problems such as slow word recall, getting lost, forgetting directions to familiar locations, substituting the wrong word, forgetfulness, etc. I also have absent ankle reflexes.

I have been told I have CRPS/RSD, arachnoiditis, syringomyleia/syrinx, fibro (these first 4 dx's the drs go back and forth with, no one agrees); i do have confirmed RA, failed fusions, cataracts, cervicle and lumbar herniations, cervicle radiculopathy, chronic pain.

Of course I dont want the MS dx, I just want a clear yes or no.

I dont know what to think. Any suggestions?

Gretchen1 said...

You mention that your symptoms are sporadic. That can usually indicate something other than MS. Most people who have MS have permanent symptoms. I have some that can vary in severity but they are always there.

Do keep us posted! Ask any MS question you may still have.

Thank you Gretchen, I should have worded that better. I have symtoms at all times, but it is sporadic of where things are more predominant. Sometimes the right leg is more than the left, sometimes its the feet that are worse. The weakness and fatigue is 24/7 but varies by time of day, physical exhertion, etc.... The intense burning patches seems to travel from place to place, even from minute to minute. Its crazy, I just dont know.

I have so many overlapping issues its hard to sort them all out.

Thank you for the response.

I do have an RA dx as well as fibro and Raynauds. I am currently on dmards, mtx, pain and nerve meds but still struggeling. The reason they are considering the MS dx is that the weakness and vision issues arent explained by any of my current dxs. The tingling, numbness, bowel/bladder and other symptoms could be from the back issues, but EMG has really seemed to rule that out as the cause.

SCS is a spinal cord stimulator and is implanted to control pain from the waist down. The SCS, multiple back surgeries and scar tissue are why the neuro cant do the LP in her office.

I sure hope its not, but it would be nice to have some sort of answer.

Sorry Gretchen, I missed this response coming in.

I was in the hospital for 7 days with a shingles outbreak. Had IV antivirals and pain meds. It was horrible. After I started with a haorrible headache and neck pain they did an LP to rule out meningitis so I handed them my script for the LP I was supposed to have the next week and asked if they would add the MS tests to what they were doing. Since I have had multiple back surgeries, SCS and scar tissues I needed the LP to be done under flouroscopy due to hardware, wires and scar tissue (I was already scheduled as an outpatient, but figured 1 LP was better than 2 if they would do it). Thankfully they agreed.

I did manage to get a copy of my LP results from my PCP and shared them with my pain management dr, who feels they are inconclusive and need furthure investigation. The MS tests were not back when I was discharged. I have faxed them to my neuro but didnt hear anything back. The results stated the following:

CSF Bands 1
Serum Bands 1
"Less than 4 is considered a negative result"
IgG S 1525 (767-1590 range)
Albumin 4755 (3200-4800 refernce range)
Monocytes 65 (15-45 reference range)

Of course there was much, much more to the list, I just made note of any items that were very close to or over the reference range. So I feel like I am back to square one, with no direction. I can not get an MRI for the next 12-18 months due to the implanted device. When the new spinal cord stimulator model is available I can have my old one taken out and new one (full body MRI compatable) implanted at the same time. I could have it out now and have it replaced when the new one is available but I would much rather have 1 surgery than digging thru scar tissue now for removal and then digging thru scar tissue again to get the leads back to the same place.

Anyway, my neuro had referred me to John Hopkins, but they wont make an appointment with me since my symptoms are to wide spread. They dont know who to put me with despite my physicians recommendations. The end of December they want me to see a general neuro near there (5 hours from my home) prior to setting me up with a JH specialist. My general neuro cant figure out the reason, both her and my physiatrist dont feel they can handle things and wanted a second opinion. I thought thats what these big hospitals are for. Not sure how all of that will pan out. So I have no one to follow up with as of now. My PCP and rhummy dont feel comfortable interpreting the results. I could make an appointment with the neuros I saw while inpatient, but I hate adding ANOTHER dr to the list. If they cant help, I will need to go to JH anyway.

I was visiting a family member and their friend is a retired neurologist so we sat down over coffee and had a nice long chat. He looked at everything and said he is glad I am not his patient, he would be referring me to a specialty center since I am so "messed up", of course he was saying everything in a joking manner, not making light of the situation.

Even though my results are "negative", some of my symptoms cant really be explained for sure. Its really the combo of symptoms that raised concerns about MS with the neuro I went to.

What next? Any suggestions? I know you can have MS with a "negative" LP, my LP wasnt exactly negative as a whole, but no clue what these variations could mean. From what I have read, the 1 CSF/serum band can either be normal or mean something (not nessecarily MS). What next? Any suggestions?

I can relate to many of your symptoms. The two that frighten me the most were the muscle spasms in my back and the double vision. My last trip to the emergency room they couldn't find anything but one of the doctors did a reflex test. He told me I showed signs of MS in my lower body. I Googled the information on what conditions mimic MS. Lyme disease was on of them but I hadn't been exposed to ticks. The one thing which applied to me was mercury poisoning. I had a mouth full of mercury fillings along with many root canals which can cause symptoms of MS. The thing I felt was most important for me to get my health back was the detox program I followed. It consist of taking high concentrations of vitamins and supplements which allows the body to detoxify. Toxins in the body such as mercury can cause neurological problems. Later I saw a mercury free dentist and had my teeth taken care of. All the symptoms of MS have been gone for over seven years. I try and keep my diet consisting of raw fruits and vegetables which gives my body the vitamins and minerals it needs to keep me healthy. Hope you find the answer to your problem.

Angeleyes13,

You have so much going on with your health it makes my head spin. It is possible to have a negative lumbar puncture and still have MS. The o-bands often show up only during an accute flare. So either you don't have MS or you aren't currently in a flare.....that would probably be the sentiment of most neurologists. And this is the reason people often go years before receiving an MS diagnosis.

Have you asked for evoked potentials? I have no idea of you can do that test with all of your back issues but it might be helpful.

Have any of your neurologists been MS specialists? I received my initial diagnosis from a general neurologist and then was sent to an MS specialist at the UCLA MS center. She said she could tell there was central nervous system damage from my reflexes and basic stimulus response tests in her office. The MRI, evoked potentials and lumbar puncture sealed the deal.

Does your insurance require referrals? You couldn't just make an appointment with the MS specialist?

I also think you should follow up on the evoked potentials. It can be a very informative test!

Angeleyes13,

You are killing me here! I need some resolution for you! I am really frustrated for you.

I'm sorry to say that I have not experienced your frustration. I was diagnosed very quickly over a period of about 5 weeks. I was misdiagnosed initially with a cerebellar stroke. Then it was quickly changed. I received treatment within 10 weeks.

I feel so badly for people in limbo! Hang in there and know that we are here to support you.

Eat2bwell, I have had unexplained pain, headaches, muscle weakness since childhood. My parents took me to tons of specialists. I remember them frequently talking about JRA, MS, fibro, CFS, lyme disease, "growing pains" but tests always came back normal.

My first back injury was about at 25, was misdiagnosed as a muscle sprain. It wasnt until 2 years later that I finally got someone to do a MRI and the herniation was so big and caused permanent neuro damage. about that time is when I started having flares or extreme joint pain, muscle weakness, incordination, etc.... It would be for a couple weaks then get better, but each time it seemed I would never recover fully. about 8 years ago was when I stopped having the periods of getting better after a flare. They suspected RA or something neuro but tests always were fine until last year when the RF finally came back high. I do have a small cyst in my spinal cord which could cause some issues. Also drs have mentioned RSD, arachnoiditis, fibro, but no one agrees, one dr says one thing, another says something different.

After gastric bypass 3 years ago, things continued to progress at the same rate as prior. I think I was just more aware since I was thinner and wanted to start moving more but it just couldnt happen. Nothing has really changed or stood out, everything is pretty much progressively getting worse.