EMG to rule out MS

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Angeleyes13
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Date Joined May 2011
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   Posted Today 11:13 AM (GMT -6)   
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?
DX: Living one day at a time!

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 9/27/2014 1:01 PM (GMT -6)   
I am sorry you find yourself so very ill with no answers. You have some extremely disturbing symptoms.

From my understanding, EMG is used to diagnose peripheral neuropathy. It can be used to exclude other disease that might cause your symptoms, but it is not a test that most neurologists use when looking for MS. I did not have this test for my diagnosis.

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.

My fatigue varies. My numbness, balance and other symptoms are very much every second of every day. These symptoms correlate with the damage to my brain and spine.

I do hope you have something more treatable than MS. My recommendation is to find a neurologist who specializes in MS. Some neuros just aren't familiar with the diagnostic process for MS. It's too bad you can't have an MRI. That could indicate a diagnostic direction quite quickly.

Do keep us posted! Ask any MS question you may still have.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Angeleyes13
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Date Joined May 2011
Total Posts : 636
   Posted 9/28/2014 1:15 PM (GMT -6)   
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.

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 9/28/2014 3:44 PM (GMT -6)   
I hope you can learn something from your upcoming LP. The variability of your symptoms lead me to think it is perhaps not MS, but of course I am not a doctor. Have you considered Lyme Disease, Fibromyalgia, Lupus, or RA?

What is SCS ? Could that be a cause? Often, having other health issues makes getting an MS diagnosis much harder. MS is a diagnosis of exclusion. If you have any other reason for your symptoms, then MS is often dismissed. Also, MS is a very expensive disease. I have double coverage and still am denied and pay lots for all my health care.

Keep me posted. I see you post often on the pain forum. I love that forum; very supportive place.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Angeleyes13
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Date Joined May 2011
Total Posts : 636
   Posted 9/28/2014 8:19 PM (GMT -6)   
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.
DX: Living one day at a time!

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 10/1/2014 11:05 PM (GMT -6)   
Weakness couldn't be from back issues? My mom has severe drop foot from stenosis. You have a lot going on! I truly hope you don't have MS on top of all your other issues.

Ask your neurologist about taking an evoked potentials test. That was very revealing and helped greatly in my diagnostic process. I was given extremities, vision (VEP) and hearing. I don't think any of your current issues would keep you from having this test. It's easy and painless. At least it was for me

Also, what reflexes and responses did your neurology exam indicate? Often reflex and response tests indicate neurological impairment. I think you could get a diagnosis from a positive lumbar puncture, a failed evoked potentials and from certain reflex responses. Not everyone needs an MRI. An MRI got the ball rolling for me; the other tests sealed the deal.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Post Edited (Gretchen1) : 10/1/2014 10:16:35 PM (GMT-6)


Angeleyes13
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Date Joined May 2011
Total Posts : 636
   Posted 11/9/2014 9:14 PM (GMT -6)   
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?

Angeleyes13
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Date Joined May 2011
Total Posts : 636
   Posted 11/10/2014 12:51 AM (GMT -6)   
My left ankle/foot reflexes are absent, right foot as well as both knee reflexes are decreased too. Those are pretty consistant. Upper extremity reflexes seem to vary.
DX: Living one day at a time!

eat2bwell
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Date Joined Sep 2014
Total Posts : 534
   Posted 11/10/2014 8:52 AM (GMT -6)   
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
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 11/10/2014 9:47 AM (GMT -6)   
Eat2bwell, my muscle spasms and weakness in my torso are so intense that I can only stay unsupported for about 5-10 minutes at a time, it is really ridiculous.

I have been tested for Lyme several times with nothing showing up, I do understand that those tests can be negative for years then show positive out of the blue. Thankfully I have no fillings in my mouth to be concerned of.

I do take alot of vitamins and eat alot of raw fruit/vegetables as well as a high protein diet. Its a balancing act since I had gastric bypass.

Not sure what the answer is, just wish someone would figure out something!
DX: Living one day at a time!

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 11/10/2014 11:42 AM (GMT -6)   
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.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Post Edited (Gretchen1) : 11/10/2014 9:49:40 AM (GMT-7)


Angeleyes13
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Date Joined May 2011
Total Posts : 636
   Posted 11/12/2014 11:15 AM (GMT -6)   
My neuro was referring me to a MS specialist at JH but they feel my symptoms are to widespread so they wont make an appt and want me to see one of their general neuros first.

My neuro did mention the evoked potential test, she claims the nearest place is two hours away so she just wanted them to do it at JH.

I am just so fed up with drs at this point.
DX: Living one day at a time!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 11/12/2014 10:53 PM (GMT -6)   
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!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 11/13/2014 7:11 AM (GMT -6)   
I dont need any referrals, its the actual Drs at JH that wont make the appointment. I have considered calling around to more local MS drs to make an appt. rather than waiting till the end of December and driving 10 hours round trip to just have someone agree I need an appt with a more specialized dr., then waiting yet again. My neuro thinks it is worth it because they are one of the best places to be.

I have an appt with my physiatrist today to see what he thinks after he reviews my hospital admission paperwork and CSF LP results. He wasnt really supportive of the orthopedic drs recommendation of seeing a neuro dr in the first place though, he felt all of my symptoms could be explained by the back nonsense.

Have you ever been to the point that you just dont really even want to proceed and just say screw it, this is just the way things will be? After talking to the neurologist last week (family friend) I dont hold out much hope for anyone wanting to did deeper to determine what the real route of the issue is. Maybe its solely the back, but then why is the upper body included?

Thank you very much for your responses Gretchen1.
DX: Living one day at a time!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 11/13/2014 9:06 AM (GMT -6)   
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.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 11/13/2014 9:30 AM (GMT -6)   
You might want to look at what was going on in your life when you started seeing your symptoms. You mention a gastric bypass. If your symptoms occurred after this procedure that could be a reason for your symptoms. Maybe you can relate the beginning of your symptoms to something that had changed in your life.

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 11/15/2014 3:15 PM (GMT -6)   
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.
DX: Living one day at a time!
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