Emg results

[Bash]

Hello. Ive had right hand weekness for about a year. My right knee buckles daily and have some left knee buckling in as well recently. Muscle twitches all over, mostly thighs, feet, butt. Occasionally on arms, hands and stomach. On the 5th of March I had a non stop twitch under my right eye which persisted non stop for weeks. This is what started the medical investigations

First Neurologist- expected to find MS diagnosis but mri of brain and spine was clear. No contrast used

Second Neurologist which is currently in progress expected to find MMN. Lumbar puncture all clear. He said tested slightly positive for autoimmune disease. Was given Rivotril for eye twitching which broke the eye spasms/ twitching but had no effect on body twitching. Gm antibodies test not out yet. He has prescribed Tegrotel 200mg

Emg and nerve tests as follows:
Abnormal

Remarks were:
- right tibial unstimuable at ankle and popliteal fossa

- left tibial unstimuable at pop fossa

- peroneal conductions normal

- sural sensory normal

- runs of fibrillation potentials in left and right quads. Polyphasic giant fiscilations found.

Any feedback would be highly appreciated . Im based in South Africa

 

[lgelb]

Can you post both tables of data without your name?

 

[Bash]

Hello. Ive attached the 3 page report. I really appreciate you taking the time to have a look at it. I wanted to add that the Neurologist stated that he does not think its BFS. I also have constant clearing of my throat. It does feel like a small amount of phlegm (been like this for months with no infection) ENT says probably heartburn, which I dont think It is, as Ive had heartburn during my pregnancies before. No change in voice, so maybe unrelated. The twitching is painless but I do get some mild (very mild) pain if I press down on the areas where I get most twitching. Test for arthritis and lupus was negative. Test for B12 and Ferritin was within normal range. Creatine within normal range. Ive read many posts were twitching as initial symptom were disregarded, but for me twitching was first. Probably 18 months now. I will be turning 42 in October.

 

[roncbrady]

Not a doctor. I have bulbar onset. Your symptoms mirror many of my pre- and post-diagnosis symptoms. My two cents is to encourage you to regularly follow up with your neurologist and/or to seek out another neurologist (particularly at an ALS clinic) to secure a different opinion. I do not wish to be alarmist, but now that I've been diagnosed for 9 months--after securing a 2nd, 3rd and 4th opinion after the initial diagnosis--I've appreciated having the gift of the knowledge of my PALS status. It has allowed me to focus on living each moment to the fullest.

 

[lgelb]

Based on the EMG, you may have something going on (this is a limited study), but I don't think it's ALS. Both nerve conduction [bilaterally] and the EMG were abnormal [though not in respect to recruitment, one of the keys to ALS concerns], which is not the case in ALS unless there is a concomitant reason, such as spine damage or diabetic neuropathy.

I would concur with seeking out a neuromuscular specialist if your current team does not come up with evidence for an immune-mediated disorder (MMN being only one of many) or some other explanation. The specialty unit at University College London collaborates with several South African universities, for example. most notably the University of Cape Town.

Best,
Laurie

 

[Bash]

Hi Laurie. I appreciate the feedback. My antibodies for the MMN diagnosis came back negative. I know not all MMN sufferers have positive antibodies, but here in SA, no treatment it appears if no antibodies. Still waiting to consult with Dr on way forward apart from tegretol. My fasting glucose test was normal and needle prick test also didnt indicate diabetes. Spine mri was clear apart from what I was told was normal wear and tear on discs by my neck(no concern for this was brought up by first neurologist). Options are not as freely available in South Africa. Im based in Johannesburg and Cape Town is a 2 hour flight away. Our public health system is poor. Im currently with a private medical aid insurance company, but all Dr consultation are paid out of pocket. There is the motor neuron association of South Africa which is where I received my current Neurologist details from. If its ok, I will post back once Ive consulted with the Neurologist. My concern is that he will just send me home on tegretol and wait till he sees further deterioration, which is why I will take your advise on a further opinion. The question now is do people think a neuromuscular Dr is better at diagnosis than Neurologist. My 3rd opinion is currently booked for the 29th May with a Neurologist also on the MND assoc list of Drs. Im only referring to Drs suggested by the MN association because my first Neurologist wasnt looking for anything other than multiple sclerosis and I think he lacked the knowledge, so therefore was looking for a Dr who would do a broader study. Also looked at Roncbradys comments and yes, a little concernd there. Finally, twitching randomly on cheeks and forehead has been going on. Very random, but noticeable. And left knee buckling more frequent along with right. Other than that, can't complain. Have a wonderful family. I am tremendously grateful to this site. Its not a diagnosis anyone wants, but theres such a delay in medical advise, which sites like this fulls in the gaps.

 

[lgelb]

A "neuromuscular specialist" is just a neurologist who specializes in just that. It sounds like you are on the right track with your appointment in May. Until then, the main advice is, don't fall.

I'm not sure what the point is of the Tegretol and it has its own side effects, so I would want to understand the reasoning for that.