A most Bizarre EMG

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A most Bizarre EMG

Postby Scaredlin on March 29th, 2014, 11:32 am

Hi,
I went for a second EMG this week. So close in time to my other EMG (early Feb), but I was nervous that the first one didn't keep the probes in long enough that I sought out another dr and here we go again.

Well, this one was even more of a shocker. I realized in contrast how patient and methodic the first one actually was! This was at a large teaching hospital in an inner city and you can tell the demands on the dr were chaotic with all the pages on the intercom system, and questions, and etc etc.

Anyway, he did my legs and upon me begging, my neck (that is where I have constant pain). The Nerve conduction test proceeded normally but the EMG was crazy fast and intense. He would stick me quickly and intensely, have me flex and 3 seconds later it was out. The first EMG I had was gentle, about 30 second sticks and I was nervous that was too fast and or incompetent!

So my husband had a good observation. The dr's aren't looking for ALS - only I am. When the dr proclaimed a totally normal exam on legs and neck (he is finishing up with my arms in two weeks), of course I asked him about ALS and he looked at me like are you kidding me, and said," I am 99.9% sure you do not have ALS based on my clinical exam and this test." I realized then that while I thought he was doing the test to rule out ALS, he was doing the test to rule out neuropathies and radiculopathies because that was all he kept discussing. Clearly we were on two different sheets of music. He didn't even have MND in his mind.

For recollection, I am the one who has burning sensations all over, but mainly in feet, sore feet ankles, working its way up my leg, burning lips, tongue, scalp, arms, etc etc. He thinks it is a small fiber neuropathy which would NOT have shown on the EMG so he was not surprised it was normal. He said after he completes the arm emg, he is going to give me the medicine for small fiber neuropathy and see how I respond to it. If I do not respond to it in a month or so, he will then do a nerve biopsy.

So why am I sitting here second guessing this EMG as well as the first EMG which had totally consistent findings despite different methodologies and timing? I guess its long past the time of MND in all the clinicians minds and I have to now let go and realize its something else. If not a neuropathy it could be BFS. He is also taking a neck CT scan even though I have had a neck MRI. I have been having a lot of throat/tongue/ear pain and that could also be irritation of the trigeminal nerve. I did have a bulbar EMG last month so luckily at least that and the fact that I don't have voice changes or swallowng problems reassured me to some degree that I don't have bulbar ALS.

I just want to get on with my life. Now Im afraid I have some type of throat cancer despite being scoped by the ENTs and no oral cancer signs. Im afraid what the neck CT will show. I am on this spiral b/c my nerves are out of wack all over the place and I know for sure I am clenching at night so that cannot be helping my tongue/ear problems, probably causing it. Now I have metatarsalgia of the ball of my foot - nerve burning pain when I stand on my tippy toes- so that has me freaked out too that my plantar reflexes are going. I don't know if this is all BFS, small fiber neuropathy, etc. but I just want a diagnosis that makes sense and to feel better. My family can't take much more of me. Ugh.
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Re: A most Bizarre EMG

Postby Scaredlin on March 29th, 2014, 11:37 am

oh yeah, and whats with the 99.9% Why not 100%????????????

Im an attorney so I know thats classic doctor cover your butt, but still!!!!!!
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Re: A most Bizarre EMG

Postby ShawnW on March 29th, 2014, 2:11 pm

And that right there is health anxiety. We second guess everything. When we are finally convinced we need a new vessel to put our anxiety into...a new disease process...a new obsession....new information which we feed our minds so that our minds can use it against us.

Doing the same things over and over again expecting a different result. I am convinced that for most of us our anxieties are both biological and spiritual in nature. Biologically, we have genetics that predispose us towards anxiety. But, there is also this spiritual element. Fear comes from a place of spiritual insecurity...a feeling of not deserving. It comes from voices telling us we are not good enough. So, we strive...and we accomplish...and we conquer yet nothing really changes. We still feel insecure and less than. We can be sitting on top of the mountain but we are blinded to it...unable to enjoy the blessing God has given us. We feel like we are in a perennial valley. This is why this condition is so resistant to healing. We are blinded...and we don't even know it.

While what I am writing doesn't pertain to everyone here, I believe you know what I am talking about. Until we truly allow grace to penetrate our being, we don't have a shot.

I must recommend a book...Ragamuffin Gospel by Brennan Manning. Check it out.
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Re: A most Bizarre EMG

Postby wjjw on March 29th, 2014, 4:52 pm

Scaredlin wrote:I went for a second EMG this week. [...] So why am I sitting here second guessing this EMG as well as the first EMG which had totally consistent findings despite different methodologies and timing? [...] Ugh.

Makes me glad I never went for a first one. But if I ever saw a pattern so typical, recurring, and yawn eliciting on this site, it would be this one.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: A most Bizarre EMG

Postby Xina535 on April 5th, 2014, 3:39 am

Scaredlin, I (and most others here) can relate to your health anxiety. I think this whole forum is about BFSers expressing their health anxiety. I think it's good for people with health anxiety to express themselves and have a place they can let it out! Our families can only take so much and people who don't have BFS or health anxiety can't really understand. I am sorry for the sensory issues you're having. Many of us have this at different levels, but I never heard of small fiber neuropathy. May I please ask you to share the name of the medicine and also let us know if it helped you any?
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Re: A most Bizarre EMG

Postby Xina535 on April 5th, 2014, 3:50 am

And the 99% thing. It is true actually. The doc is not a genie who can look into the future and tell you you will never get it. He can't say even 100% if he himself or his children won't ever get **S, or any of his patients. So it's more than covering butt, it's the truth. I also so wanted 100% answer. No one can get it, even your doc!
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Re: A most Bizarre EMG

Postby raindog on April 10th, 2014, 6:53 pm

Scaredlin wrote:oh yeah, and whats with the 99.9% Why not 100%????????????

Im an attorney so I know thats classic doctor cover your butt, but still!!!!!!


Perhaps he was shortening 99.99999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999
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Re: A most Bizarre EMG

Postby muppetdog on April 17th, 2014, 11:43 pm

I did not know they had "medicine" for small fiber neuropathy. Your doctor must be like 20 years ahead of the rest of the neuropathy clinics like Johns Hopkins, Jack Miller Center, and Cornell-Weil.

Usually they take a ENFD (skin biopsy) to count the nerve fibers in your skin to help point a bit more towards SFN. Might want to check into that. Oh, an read up on SFN, its not fun and progressive and if it's idiopathic, that could be frustrating.

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Re: A most Bizarre EMG

Postby Scaredlin on April 18th, 2014, 4:26 pm

Yes, going back to him to be certain for biopsy. As for medicine, it was "lyrica" that he suggested. Not to fix, just to help. And non-length dependent.

He is also sending me to a hemotologist/oncologist b/c on protein electrophoresis I have a "polyclonal gammopathy" Igm kappa and lambda increased" Im sure twitchdoc and little lost can illuminate, but basically I have an Igm titer that shows infection/inflammation. I also had this 15 yrs ago with different neuro symptoms. At the time I had bone marrow taken which showed a bone marrow deletion as well which they couldn't explain. Basically, everything is pointing to a chronic infection - ebv (mono), lyme that even impacted my bone marrow. Ive had both infections so now going to try and get someone to tell me what the heck is inflaming my nerves. I also have a low AnA for years so I have something that is now getting the best of my body that was never identified. The hemo/onco can apparently run specialized cancer type tests on the blood to identify its DNA.

It literally started at my feet and its now in my face and head. Body twitching has stopped but I am getting shifting feelings in my face, sore throat/tonsil pain, burning eyes and lips and tongue, ear pain and eyes twitching and a swollen or pressure head feeling like its going to pop. This scares me more than the body twitching and feels so urgent like Im constantly having a giant head and cold. The neuro just kept saying its the small fiber, but hello, I would like to know. I realize most are idiopathic, but there are some pretty significant clues in my case....

So its still a diagnostic journey for me.
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Re: A most Bizarre EMG

Postby muppetdog on April 18th, 2014, 10:14 pm

I didn't know EVB had DNA :)

Please tell us how the tests turn out. I am interested to hear what type of tests they run on you. Remember to learn as much as you can about what they are doing.

How were you diagnosed the first time with Lyme? How was it treated, were you in an epidemic location? The Lyme trail can be a very frustrating one, fraught with the best of the best of pseudo-science. Been there, done that one.
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Re: A most Bizarre EMG

Postby muppetdog on April 18th, 2014, 10:17 pm

Just curious, What made them run these tests on you?

http://myeloma.org/pdfs/U-Freelite-Eng2011_g2web.pdf
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Re: A most Bizarre EMG

Postby Scaredlin on April 19th, 2014, 8:19 am

I live in NJ. High Lyme incident.

15 yrs ago with my neuro symptoms I had a ton of bruising and weight loss as well. Hence the full hemo/onc work up.

This time, the neuro decided to repeat it to see if still there. It is and it is still polyclonal. Monoclonal would be bad (cancer, myleoma, etc). Polyclonal, especially 15 yrs later highly unlikely to be cancer. But I am following up on why I have the bone marrow deletion.

As for my Lyme, I was told by an infectious disease dr that no way it could be Lyme bc I am still showing an IgM response and not a full IgG response. However, if you talk to a Lyme specialist or anyone who has LYme, they will tell you that band 23 which I have is a Lyme specific response. Meaning no other bacteria/antigen can trigger that band. And I had a Lyme dr tell me a few yrs back it was Lyme but for some reason I didn't follow his regimen. It called for crazy amount of antibiotics. Maybe I should have listened.

I will keep everyone updated. It is my suspicion that a lot people here may have chronic infections, viruses that are causative and or lurking.
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Re: A most Bizarre EMG

Postby ShawnW on April 19th, 2014, 11:47 am

Scaredlin wrote:I live in NJ. High Lyme incident.

15 yrs ago with my neuro symptoms I had a ton of bruising and weight loss as well. Hence the full hemo/onc work up.

This time, the neuro decided to repeat it to see if still there. It is and it is still polyclonal. Monoclonal would be bad (cancer, myleoma, etc). Polyclonal, especially 15 yrs later highly unlikely to be cancer. But I am following up on why I have the bone marrow deletion.

As for my Lyme, I was told by an infectious disease dr that no way it could be Lyme bc I am still showing an IgM response and not a full IgG response. However, if you talk to a Lyme specialist or anyone who has LYme, they will tell you that band 23 which I have is a Lyme specific response. Meaning no other bacteria/antigen can trigger that band. And I had a Lyme dr tell me a few yrs back it was Lyme but for some reason I didn't follow his regimen. It called for crazy amount of antibiotics. Maybe I should have listened.

I will keep everyone updated. It is my suspicion that a lot people here may have chronic infections, viruses that are causative and or lurking.
Sounds like you are one of the ones who gets answers. Sounds like something to pursue
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Re: A most Bizarre EMG

Postby muppetdog on April 19th, 2014, 3:43 pm

Scaredlin -

I will keep everyone updated. It is my suspicion that a lot people here may have chronic infections, viruses that are causative and or lurking.


I tend to agree to some extent.

As for the Lyme thing. I have been down that road. I have tested with bands 31 and 39 IGM and IGG (borrelia "body part" specific antibodies) from both Igenex and then later when I went to the Columbia University Lyme Second Opinion Service http://www.columbia-lyme.org/patients/second_opinions.html I tested positive for only the 39 band at Stony Brook(IGG). It can be frustrating but the consensus is that I have some sort of autoimmune reaction to a previous infection. Who knows since this all started with the singles, but I also tested positive for EVB, HHV6, and Parvo, like the rest of 98% of the world.

I also have the burning and other nerve pain type stuff along with fatigue. I currently had the ENFD test, but am waiting for the results. This is why I ask and warn about the Lyme stuff. LLMD's (Lyme Literate MD) are always going to tell you that you have Lyme if you have a band or two. Whether you do or just have some antibodies left over from exposure is anyone's guess. There are a lot of people out there that pound the antibiotics with no results but still claim they have Lyme because they have been given the pseudo-sience blessing.

I hope you find some answers. Feel free to PM me. I am more of an answer seeker then a "just ignore it, pretend it's benign, even though it lowers your quality of life" people on this board. I would love to talk shop if it benefits ether of us.

Good luck

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Re: A most Bizarre EMG

Postby muppetdog on April 19th, 2014, 3:49 pm

Oh, and if Small Fiber Neruopathy, CIDP, or any other type of neuropathy has been mentioned by your doctor, you might want to check out the Neuro Talk board on the topic.

http://neurotalk.psychcentral.com/forum20.html

They have some really knowledgeable people on there and you will find that a lot of them twitch and have the same symptoms as a lot of people on this board. There are a number of well known neuropathy clinics and test to have done to find the cause of the neuropathy rather than let Lyrica, Cymbalta, or an other drug smooth over the symptoms while the underlying cause makes it worse.

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Re: A most Bizarre EMG

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